Last post

Just occurred to me that heading this " Last Post" suggests ( maybe to those more militarily minded) something more serious than I intended! All I meant was- this is to be the last post in the blog. Reason for that is that clearly I'm off the lenalidomide trial now but also I'm about to enter a spell where I'll probable feel quite well for a while until the time comes for more treatment. For the past two years or so I've been through about 5 different types of therapies- CVADD, stem cell transplant, thalidomide, Velcade, Zdex and the lenalidomide. I've also had surgery twice to insert plates/pins, surgery to remove my gall bladder, broken arm, had some meaningful clots and PEs and then became diabetic. All of a sudden I have no treatment and no surgery ahead of me. I'm now not even having to inject insulin!And as many of us know its often the treatment that makes us myeloma folks feel ill. So I'm hoping even for a short time to feel pretty good and would like to get myeloma" out of my head" as much as I can for this short spell- even taken on a new job contract. So would like to let the blog go as part of all that. The truth is I'm also running out of jokes so I'd better quit when I'm ahead!

How to sum up the lenalidomide trial? Better and more manageable than I thought though as usual the dexamethasone ( steroids) had their usual debilitating effect on me for a couple of days each cycle- these were high doses and its reassuring to hear that all people involved( at least that I know of) in the study had their dex dose reduced. I was also able to pretty much do things like build my solar panels( did I ever tell you about that!!) so my lenalidomide experience was in some respects better than other therapies which meant I was unable to do as much. Disappointed of course that after an initial amazing reduction in my paraprotein it climbed again and we'll need to see how quickly it continues to do so. But in general not a bad experience.

I think I'm beginning to regress now and I'm off to go camping- which I haven't done for a long time but have promised not to climb trees. ( NOPE-A CHANGE OF PLAN- GOING ON THE REAPER AFTER ALL. SEE HER AT WWW.THEREAPER.CO.UK ) For those who do keep in touch through the blog and want to continue doing so- just use my email address of asquith48@blueyonder.co.uk

Hope all goes well for those who had reason to read the blog.
Stewart

Time for a think

Well my paraprotein is up again and this despite the 5 cycles I managed on the lenalidomide. Now up to 13 and does seem to repeat the history of my other 4 or 5 chemo regimes- successful to begin with but then the myeloma fights back/adjusts and the paraprotein count rises. One concern of course is that on relatively low paraprotein levels ( e.g. my paraprotein was 47 when first dignosed so 13 is quite low) I still have had quite a few bone issues and lesions( you'll recall I've had a broken arm and have lesions in my arms, legs, pelvis, skull and vertebrae with prophylactic pins/plates inserted in my keft tibia and left elbow). So when I ask the doc what the prognosis is then the answer is a very clear " don't really know" other than in general terms- maybe some more bone damage as the myeloma progresses and maybe more susceptible to/difficult to fight off infections.

The odd thing about this myeloma business as many of you will know is that I feel remarkably well just now on the scale of things and know that folks think I look well- so how can this man have an incurable cancer! You'll also know of one of my principles about myeloma- that there is nothing more certain about it than the uncertainty. You never know what is going to happen next week health wise! Bit like supporting Brechin City! But it is quite odd to be speaking about making arrangements for when I'm not here or how best to use the healthy time left when I feel healthier than some of my friends. But I'll have a break from treatment just now till we see what rate the myeloma progresses at and indeed see what options I might have left treatment wise- bear in mind I've had a stem cell transplant and about 5 or 6 different chemo regimes all lasting at least 4 cycles. Bit tiring.

The complicating factor for decision making just now is that Elspeth is still suffering from lymphodaema /cellulitis and is having her arm bandaged two days a week. She has also decided to stop working for a while- partly because of my situation and partly because of the need for her t0 deal with the cellulitis properly and get herself healthy again.

Phew- I'm away for a lie doon!

Ach well- I made cycle 5, and Diabetes

Firstly, hello to the couple I met at the Oncology centre yesterday and good luck with the 4th or 5th? cycle on the Lenalidomide trial. Glad you enjoy the blog and always good to meet folks going through the same thing. Second- thanks to Don for the advice on statins. I might need to come to the US to discuss with you!

Quite a week. My wife is still off work and now has a compression bandage to address the lymph issues in her arm. This will go on for a couple of weeks and is all a legacy of the surgery for her breast cancer. She is also to take a break from work for a while so we might be able to do one or two things while we are both around.

As some of you know I've now stopped taking insulin for four days now and have had no adverse effects- in fact this morning my blood sugars were down to 5 so wee bit of a concern that they still seem to be going down. I'd also thought that I would have the usual difficulty of trying to adjust to the effect of the steroids this morning as I started cycle 6- the last cycle in the protocol of the trial. However- I haven't made cycle 6 as decision made by all ( including me as always) that it might not be worth it- my paraprotein is unfortunately still going up. Even if that hadn't been the case, I am in fact neutropenic ( neutrophils at .8) so wouldn't have received my treatment yesterday in any case. Ach well, I made and finished cycle 5 which was an achjievement in itself. There does seem to be something in my form of myeloma where the myeloma is able to adjust to resisting whatever treatment I get after 4 05 cycles. Certainly fighting hard just now to stop me going on with treatment. So its an unusual day for me today- no steroids and no insulin! Long term plan is now to monitor me but let me have a break- I've had 5 different regimes of chemotherapy over the past 3 years and also a stem cell transplant- so its been hard going. So now having a break till we get to plan B- assuming there is a Plan B!

Mailbox issues

A new post tomorrow but just to let those who contact me know- my mailbox has been choked for the past three days by a huge file- does explain why I received no emails over the past three day. If you sent anything and had no reply - please resend as all is now well with my mailbox( I think!)

Diabetes, jaw, abseiling and Scottish stereotype!

Was at diabetes clinic today. On Saturday I actually had my first hypoglycaemic attack ( a hypo!). As I said in my last post my blood sugar levels have been falling despite me reducing my insulin. So went off to see Diabetic Specialist nurse today and decision made I should see what happens if I take no insulin. So experiment tonight and tomorrow morning and then Gill will call me to discuss what's happened. I'll probably need to take insulin when I start my 6th cycle with the steroids on Friday. So - interesting issue- is my body no longer needing the help it gets from insulin. Watch this space- but no injections tonight or tomorrow.

Also at WGH dentist this morning and the thinking is that there is some improvement in my jaw/bone where I had the "maybe" osteonecrosis. Again still no definitive statement yet but certainly no need for intervention.

I get really well looked after as my GP ( hope you're not reading this Bill) called on Monday to see how I was- with going to hospital more I see him less. Great to get such care though its clear he and I have been seeing each other for a long time now. He told me that for my Xmas he's going to buy me an abseiling outfit so he can worry less about me on the roof looking after my solar panels. Its me that's meant to crack the jokes.

I also found my self living up to a true Scottish stereotype. As you know I've bought electronic pipes( can't play the real things as my elbow won't let me). To hear them properly I needed an amplifier. The pipes cost me over £300 but I found myself buying an amplifier at £29 - about the cheapest you can get. My thinking was is that if my predicted survival time is short then then why waste money on an expensive amplifier!! Needless to say Elspeth and my jam session friend and kids have put me right on that one and a new better amplifier is on its way. Reminds of the time in hospital when I thought the end was coming and I spent valuable time trying to find a receipt for a new pair of trousers so my wife could get a refund!

Diabetic changes?

As some of you know I'm also insulin dependent and we think the diabetes was brought on by the amount of dexamethasone ( steroids) I've had during my various chemotherapies. When I went to the diabetic clinic a couple of weeks ago they suggested they'd like me to keep my blood sugars a bit higher than I've been doing as I seem to have been running too low. I've been reducing my insulin as suggested but still finding my blood sugars too low so wonder if I'm beginning to come out of the diabetes. Whereas I was taking 23/24 units of Novomix in the morning I'm now down to 16 ( and 6 in the evening instead of the usual 11 or so)and still find my BMs at a level lower than they want. If anyone has any thoughts or experience of coming out of a drug induced form of diabetes ( if ineed that's right) I'd welcome any info.

Not so good news, good news and really good news

Just heard that my paraprotein is now up to 12. So despite being on the Lenalidomide- the paraprotein is continuing to rise. Not completely unexpected and the thinking is that since I'm at cycle 5 I should now continue to have cycle 6- the last cycle determined by the trial. But suspect it won't do much to reverse the upward trend which- as they say medically is a bit of a bugger. What my wife and I have been doing in any case this week is reviewing the past three years and in short its fair to say that without all the various treatments I've had I wouldn't be here. ( have a look at www.asquithmedical.co.uk to see the various ways m,yeloma has hit me and what treatment responses have been). I've also been quite fortunate in the sense that my myeloma has left me quite able to get on with other things though there have been spells where its been a bit difficult - but on the scale of things and in comparison with fellow patients my quality of life over the past few years has been pretty good. Interestingly some of my issues to deal with have been brought on by my treatment not by the myeloma. For example- I'm now insulin dependent- probably as a result of the dexamethasone( steroids) kicking me over the line. I've also a problem in my jaw which may be a result of the zometa( my bone support drug). However, the fact that I'm still here is of course a major achievement. If the lenalidomide fails to stop any further increase I already know what my next treatment attempt will be so we'll wait and see whether that materialises. But I also know I'm running out of options. And I just bought a new ladder yesterday! ( orthopaedic surgeon faints in shock!).

E is also back at the doctor as the cellulitis in her arm( where her lymph nodes were removed) hasn't cleared up completely. She wonders- as in the past- she might need some heavy duty IV antibiotics to get rid of the low lying infection that seems to be hanging around.

The good news is that having missed my trip on Reaper - the old Fifie fishing boat- I was contacted by the Museum folks to say there was another trip I could go on if I'm up to it. So hope to be sailing from Anstruther to Arbroath for the Arboath sea fest.

The really good news is that having lagged my solar pipe runs twice now- losing much less heat from the solar panels and haven't had our gas heating on for about two weeks now except for a boost one grey morning. We are even getting a rebate cheque of £250 from the electricity board! Fully expect our gas bills to be going down as well. And yes- the new ladder is to get me up on to the roof more easily and more safely ( orthopaedic surgeon faints again!)

Mid cycle review

Was at Haematology clinic for mid cycle review. In short- feeling remarkably well though did decide not to risk my leg on the Reaper( the Fifie sailing boat) as planned- want to be sure it recovers properly from the infection. Also I seem to have another wee problem and one which - despite my openness and the indignities of hospital treatment in the past few years - I found difficult to speak to Maureen - my research nurse-about. Lets put it this way- the herpes virus has appeared again and it isn't in the form of shingles on my back but on other bits of my anatomy! But again a sign my immune system is a bit low though my bloods today were actually pretty good for mid cycle- and I knew they would be good given how well I''m feeling. I'll hear at the beginning of the week which way my paraprotein has decided to go this time. But its clear that I will also now be going on to cycle 6- an achievement of some import given my history!

Meant to say as well that at the diabetes clinic I've been asked to lower my insulin intake as my blood sugars have apparently been lower than they want- and I'm now taking much less than when I started. Interesting- wonder what's happening here.

Pins and Needles or Needles and Pins-ah( apologies to the Searchers)

As you'll gather we've been away for a few days on holiday. Both of us with our medication packs as Elspeth has been signed off with pretty bad cellulitis in the arm where she has lymphodaema resulting from her breast cancer surgery. We both had to come back in the middle of the break to see our respective medics. In my case that involved the hospital to see the orthopaedic surgeon to check out my lesions and pin trouble etc. To cut a long story short- there appears to be little growth in the lesions in the leg with the pin in it and despite the apparent infection the pin is safe and secure. In fact he wants to adopt a " I'll call him" approach if I need to so one clinic less. But as a baseline for future infection risk he wanted some bloods taken- that's when the needle fun started- meeting nurses who hadn't encountered my veins before!! It took more than 6 goes with the nurses before a doctor was called. She then didn't so much use a needle as adopt a hammer and chisel approach- but it worked! But news re my leg is good and I was told I can do what I want until my ;leg and pin tell me not to. So I'll give all risky stuff a break for a week or so- so no climbing the ladder to my solar panel( which is working beautifully).

In terms of cycle 5- I had about three low ( physically) days after coming off the steroids but in general its not been a bad experience though I've been a bit tired. But it didn't spoil our break as we intended to have a relaxing time in any case- even went without the dog!

I also found out that the last paraprotein test was 10 but not a good measure as it was done after I'd been off the revlimid for about three weeks. But does indicate the way my myeloma is waiting in the wings to respond when I'm not getting treatment.

However, it looks as if I might even make cycle 6- I'm at Haematology clinic on Thursday and will find out more about the course of my treatment. Meantime- off to sit with my leg up( as commanded by E.

Legs, jaws and The Fairy Mountain

Thanks to to Don and Sandi for good wishes. And for Sandi- by all accounts the second cycle on full steroid dose is the worst- certainly was for me and others so your dad is maybe going through a normal phase I hope and trust he'll pick up as the steroid dose reduces. Sure he will.

We are now in the Scottish highlands after a heavy end of the week and concern we might not get away. Good news is that I may not have osteonecrosis of the jaw and just a watching brief for now. But I was also at the diabetic clinic the same day and asked them to look at a my left leg which had become pretty swollen and tender- you- fears of a clot so sent for an ultrasound but no clot in sight. Called into my haematology ward next morning and suspected infection in my leg( the one with the pin in it) so given anti biotics to take on holiday with me and with alert that I should get in touch if no improvement etc as they didn't want the cost of a helicopter flight! Fortunately - seems to have been an infection and the anti-biotics did the trick. All appears resolved though I have to discuss with the orthopaedics as this seems to be a recurring feature of my tin leg- as they warned me it might be. But all well. Back on the steroids and usual raised blood sugars but again well controlled and I feel OK.

What is helping is that we are staying in a place overlooking Loch Rannoch and also Schiehallion- the Fairy Mountain. Maybe good vibes from the residents there!

5th Cycle here I come

Well it looks as if after all I'll make the 5th cycle of the trial- an unusual occurrence for me to get to the 5th cycle of any treatment. I'll start the cycle on Thursday and then Friday we are going away for a wee holiday. I'm to have my bloods done on Thursday to ensure I'm OK for the cycle but I know by how I feel ( remarkably well apart from recovering from a maybe broken rib) that there won't be a problem.

Thursday proving to be an eventful day- Cycle 5 process starts; followed by Diabetes clinic ; followed by Maxillo facial guys in the afternoon. I'll need a holiday!

Pipes and pipes

Waiting to hear if I'll stay on the trial or not. Interestingly- mixed feelings but I trust the team at WGH enough to run with whatever decision they/we make.

Meantime leaking solar pipes now fixed and all up and running except for one thing- no sun!! Also, now have my electronic (bag)pipes so I can pick up playing the old tunes again. As soon as I got them this morning I was playing them- amazing( isn't it, Grace(a joke?)) how the tunes can stay in your fingers but if you asked me to write the music or whistle a tune I probably couldn't do it. First tune I had a go at was " Invisible Dram" ( dram being Scots for a measure of whisky)- I wrote this tune for Elspeth's dad- every year we gave him a bottle of whisky for his xmas but we never saw any of it!! Hence the Invisible Dram!

Eh?

News today- would you believe that my paraprotein is back down to 9 from 11. So with the treatment it was going up and after withdrawing from the trial its gone down again. Roller coaster time again. So issue is- does this merit staying on the trial? Will I be allowed to in terms of trial protocols? I think I did say the most annoying thing about myeloma is the uncertainty it introduces into life. I've had to accomodate this by realising that the most certain thing about myeloma is the uncertainty! I'll find out on Monday what plan of action is to be and meantime will go and lie down in a dark room and recover my energies!

But the really important news is that my solar panel is working well- the collector reached 74 degrees yesetrday and the hot water cylinder went up to 64 degrees. And all this for no cost ( I'm a Scot!). Next plan of action is to get back to playing pipe music- I gave up when my left arm was plated- too much pressure on a vulnerable elbow. But I'll buy eletronic pipes again( in fact they were ordered two hours ago).

Blogging on.

You can't get rid of me that easily. Decided to keep the blog going since my failure to continue is of course part of the trial " results". Also had some supportive emails from folks asking that I keep it going. So I will! In any case we've now had 1911 unique visitors- I want to reach the 2000!

Post Clinic Thoughts

Elspeth and I have now had a think about life and the universe after the news at the clinic last week and the main important conclusion we've come to is that we might in fact buy a twin coil solar cylinder to boost our solar system!.

In terms of other issues- particularly leaving the drug trial and my rising paraprotein, we'll do as we also do- concentrate on making sure we make the most of what time we have now- both personally and also in terms of keeping some work going. I'll find out in a months time just how fast the myeloma is progressing and we can make a better decision then with the WGH team about what options remain. So we'll wait til then and focus on other things for now. I do of course think over the future etc and what might be..... but I've never let the myeloma stop me doing things. As I've said all along- my TMTMTM principle ( There's More To Me Than Myeloma) has helped me put it aside when I want to get on with other things- it gets put in my diary as a separate item.

So......... delighted to tell you that I have in fact been able to get an invitation to be a guest on a sailing of the Reaper at the time of the Pittenweem Festival in August and looking forward to it immensely. See Reaper in the foto. Also possibility of a wee holiday in Norway ( a country and people we like very much) later in the month depending on how things go at next clinic.

PS

PS- apologies to those who are expecting me to get back to them. I will do but its been a heavy week.

Hate to say I told you so, but..............

At clinic today ( haematology ) and decision made that I will withdraw from the lenalidomide trial. My paraprotein is at 11 as you know which is a rise of 6 steps in the past 5 weeks or so. Also, my history is one of never quite making it to a complete 5th cycle, so as predicted earlier in the blog- no 5th cycle for me! And this despite the dramatic improvement the lenalidomide made in the first cycle. Great thing about WGH is that I'm part of the decision making process and my own view that I don't want to carry on with treatment unnecessarily is an element in it. Next question is obviously- so what do we do next? Its clear that we are running out of options though Huw my consultant has some tricks still up his sleeves. The nice thing about my treatment at the WGH is how well I've come to know some of the nurses and how concerned they are about what's happening to me- having had about 6 chemotherapy regimes and a stem cell transplant at the WGH it would be odd if I didn't see them as friends more than nurses. And since at least one of them is now able to tell me the Brechin City score ( I hope you are in training for the new season Liz)on a Monday morning- what more can you ask for!

But being realistic I know that we should be treating this summer as my last though we'll get a better idea of timescales when we see what rate the myeloma progresses at. The plan is to monitor me over the next month or two with no treatment and see what happens to the paraprotein levels and then take a decision about when and how to intervene. I've enough to keep me bust in any case as in the next few weeks I have to go to the Maxillo facial guys because of my jaw, go to the diabetic clinic ( my recent retinopathy test was clear), go to the Orthopaedic clinic to monitor my bone issues/pins, plates etc, go to radiology clinic to monitor effect of radiotherapy on one or two lesions, go to dental clinic at the WGH etc. As relief from all this, my sons are taking me to the Barcelona game in Edinburgh and Elspeth and I are planning to go away (with an ill dog!)for a break.

( One thing to say here is that- and this might seem odd if you don't know how varied myeloma can reveal itself- is that I consider myself very lucky medically in that though the myeloma has made me ill some times and I've broken the occasional bone, had surgery, become diabetic etc etc it hasn't actually stopped me completely from doing things. Nor have I had the pain levels some others have had. And as many cancer patients will say- the myeloma has given me the opportunity to view the world with more appreciation and get off the economic treadmill and also be closer to Elspeth and our kids. So - all in all- really quite lucky.) Why do we need to be ill to get into that state of appreciation of our lives ( I'd better stop this is getting a bit serious).

So I'll need to digest all this and have a think. Might also need to think about whether to keep the blog going or not. But the good news is that the solar panel seems to be working OK- but if we could get a wee bit more sun..................

Three months on- the wife's tale part 2.

Yesterday's news that Stewart's paraprotein is headed in the wrong direction was not only disappointing but, to be honest, a bit of a shock. He has been so well over this last cycle! Indeed, aside from fatigue and a few blips, he has ridden out the three cycles he has had since I last gave a view for the sidelines pretty well and achieved a great deal too. Since selling the hall flooring while I was out (see 2 April entry), he has rewired and redecorated said hall, put in piping for and installed a bigger solar panel, been to France, advanced plans for the research centre on rural childhood, got a piece on myeloma in the national paper to do his bit for myeloma awareness week and had a couple of weekends away. Seeing him on the roof yesterday morning totally engrossed in fitting the first tube on the solar panel frame was a special moment for me. I didn't know the latest paraprotein result then but did think that I have Revlimid ( and Huw and the team at WGH)to thank for that moment (not to mention cheap green hot water in the future). And then there is the wormery Stewart got me ..... not perhaps the most romantic present but he got so much pleasure from anticipating its arrival and my reaction. So, whatever happens on the next leg of the journey, we will look back on some pretty good and fulfilling times on this stretch of the road.

Chinese toothpaste and that well known medical term- " Oh Bugger"

The good news first- solar panel system now up and running and has heated water very effectively in its first afternoon. Hope this keeps going. Always an immense sense of satisfaction building some yourself and then it actually works ! ( not always the case in my experience). But this time- built a low cost system( I reckon about £1200 in total) which does in fact heat water at no cost and with low installation cost payback time should be much reduced- particularly if gas goes up again. So a good one. The reference to Chinese toothpaste is that the solar panel kit is made in China but distributed through a UK company. To connect the heat pipes to the main collector the kit contains a tube ( like a toothpaste tube) with white thermal silicone ( to make for good connections) with the instructions in Chinese. In the trade this is referred to in a short hand way as Chinese toothpaste.

The bad news is that I've just heard today my paraprotein has jumped up 4 notches and stands now at 11. So in the past 5 or 6 weeks its actually gone up from 5 to 11- not a good result and as I see Huw my consultant tomorrow we'll need to look at what all this means. And if my neutrophils haven't gone up then I suspect at the very least I won't start my 5th cycle tomorrow( Remember- I did tell you I've never completed a 5th cycle in any of my various treatments!). Many thanks to Don ( who I don't know but thanks for the nice email)who reminded us that studies are now showing that low dose dexamethasone with Revlimid is as effective if not more so in some cases. Unfortunately I had already been put on low dose dexamethasone but my paraprotein seems not to have read the recent studies and so isn't following the script. I'm also feeling my ribs pretty sore and don't know yet if this is to do with climbing ladders or to do with my myeloma ( I broke ribs coughing in the early stages of my condition). I'll follow up when at clinic tomorrow. But, as the medics say in highly technical language- Oh bugger!!

White counts/neutrophils etc

Just had bloods done at hospital and it appears I'm neutropenic by quite a bit- my neutrophils are .7 I think normal starts at about about 2 and I often - even at my best- run at about 1.2) I usually have low white counts etc but .7 for neutrophils is low even by my standards. The protocols of the study suggest that if neutropenic then the dose of lenalidomide has to be reduced. Problem with that is that once reduced it can't be increased again. I have until Thursday for an improvement in the neutrophil level so that I can continue as planned in the trial. But remember my warning right at the outset of this trial- I've never completed 5 cycles of any drug/chemotherapy I've been on. Beginning to suspect that pattern may well happen on the lenalidomide trial as well!

I also had a paraprotein done this morning so we'll see in a couple of days whether the unfortunate trend is still on the way up.

Scaffies, zulus and fifies!

To those of you from Brechin who have reconnected, no- "Scaffies" don't refer to the rubbish collectors! They are all types of traditional boat though as far as I could make out there was only one Zulu at the Portsoy Traditional Boat Festival.

A great event- boats, music and traditional crafts all on display and all for an entrance fee of a fiver ( though I think my chemotherapy journey accounts for the fact that the girl selling the tickets insisted I was an OAP concession. Ach well- maybe I'm older than I think). There are two boats of note in the photo and both are "Fifies". The green one in the front of the harbour wall is the Swan which sailed to Portsoy from Shetland. The sails of the other behind the Swan is the Reaper- a 70 foot fifie which is also part of the Scottish Fisheries Museum at Anstruther in Fife. ( By sheer coincidence I've just been watching Coast and there was Reaper sailing up the Fife coast!) You can judge how large the sails are by comparing them with the folk in the photo. Don't miss the festival next year if you are "in to" traditional boats.

But as well as the enjoyment of seeing the boats, it was also reassuring that I was able to go there at all and to do so on my own. Yes, Elspeth let me out to play on my own though the cost was regular texts home to let her know I was OK! But this is my drug free week( apart from my warfarin and diabetes, so was feeling quite well though it was a bit tiring. But given that on Thursday I drove to Perth, had four meetings and then drove another 150 or so miles to Portsoy all in the one day then that was pretty good by my standards. For those others on lenalidomide/revlimid I hope its reassuring that I'm still able to do things like this. I had also planned to go to a vintage tractor rally ( do you get the impression I'm maybe born into the wrong time?)near Portsoy on the Sunday but heavy rain meant that was cancelled.

For those of you who saw the article in the Scotsman last week- no I didn't say that all myeloma patients looked healthy and overweight. What I did say though was that some of us- a wee group at Edinburgh- tend to look healthy, we are a bit overweight( I'd like to get off the steroids) and have difficulty convincing some folks we are actually a little bit ill. Since my kids now know, I can tell you that I've been told that I can expect to have optimistically a year or 18 months left. So I'll keep the blog going as long as I can and as long as folks are interested- we've now had over 1600 unique visitors and I've had some nice comments from folk.

Right - off to dream about old boats and tractors whilst still waiting on the final bit of my solar panel system!

Velcade and Giftaid

To answer Bobin(?)'s question- I had 4 cycles of Velcade and although it brought my paraprotein down it did so quite slowly. Also it was the effect of the steroids when I was on the Velcade which threw me into Diabetes.

Many thanks to Anonymous who sent £200 (almost £250 when gift aided ) to my Justgiving site www.justgiving.com/myelomajourney ). Would CM like to email me!

What's happening here? Boats and Tractors

Not sure what's happening here- still taking the lenalidomide( finishes in a couple of days) but feel very well( usual tiredness) and no rash appearred. By this stage the last two cycles I was covered in a pretty serious rash. Its odd the things that come into your head- maybe its just talcum powder in the lenalidomide capsules! Maybe they've put in too weak a mixture. Whatever the reason, this seems a different experience from earlier cycles. The fact that my steroid dose was reduced may also be something to do with it.

I also now have an idea of my survival timescale- which I'll keep to myself just now. Its not really any different from what we were expecting- but it certainly concentrates the mind. The fact is- without the medics and the availability of recent drugs I wouldn't be here so anything else really is a great bonus.

I think you know I like tractors ( see earlier post about Dougie McLean's song Strathmore starting with the sound of a Ferguson tractor). Elspeth bought me a book on classic tractors so if you want to know about the 1900 Drutchke, the "Canadian" or about cable pull systems I'm your man. Great reading though. I've also been reading about Harry Ferguson- the man who built ( surprisingly) the Ferguson tractor and also the three way linkage system which revolutionised the attachment of implements. Part of his plan was not just to make money but also to provide third world countries with a cheap effective tractor to help address poverty through more effective farming.

As well as old tractors I also like old boats (maybe the liking of old things reflects advancing age!) and am treating myself to a weekend at the Scottish Traditional Boat Festival at Portsoy on the north coast of Aberdeenshire. Looks like a great weekend- www.scottishtraditionalboatfestival.co.uk

Can't finish my solar panels as I'm still waiting on a bit from the supplier. Mmmmm- missing all that solar energy.

Mid cycle review

From the 4th cycle on there is in fact no mid cycle review in the trial. That is, no blood checks etc- the assumption being I suppose that by this stage any serious issues would have been thrown up. So this mid cycle review s just me!

Oddly, though I've had the usual slump after coming off steroids it hasn't been as severe as it was on the first few cycles. I'm tired but gently so- not the dramatic exhaustion I was hit with previously. As I've also said earlier, the rash hasn't appeared and it had done so by this time the last two cycles. So in general I feel better than I did on the earlier cycles and not so much affected by the lenalidomide as previously. The main issue for me is of course what is happening to my paraprotein as it took an unfortunate up turn last time round. I'll need to wait till next clinic to see what's happening to it now. If it goes up again there will probably be an issue about whether I should/ or whether indeed its worthwhile me staying on the trial. If the lenalidomide has achieved all it can, then is there any point in carrying on with it. We'll see.

Rash?

By this time in my last two cycles a pretty severe rash had appearred and we'd put it down to the Lenalidomide. But nothing has appearred yet in this cycle though I'm half way through again. Be interesting to see if anything does appear.

Did you know.......?

For other myeloma folks. Did you know-

that you might be eligible for care and mobility allowances? ( I get them)
that because of above you might be eligible for a motability car? Even if you can't drive, a mobility car could be acquired for your carer. (Because of my left side plates/pins problem I have one with automatic gearing etc?)
that you might be eiligible for a blue badge- again even for your driver/carer
that you might be eligible for a bus pass? I am and have one
that you might be eligible for a rail pass. I am and have one
that you can maybe drawn down a private pension as a lump sum now rather than have to wait until you're no longer here. Spend it now I say and bugger the kids!! I'm trying to do this.

And while we are on the topic, we've decided that Elspeth my wife should have Power of Attorney over me should something happens that means I can't make decisions myself. The joke around our friends and family is that the Power of Attiorney means Elspeth can make decisions about all aspects of my life-just as she's been doing for years!! BUt seriously I don't want my survivors to be in a position of dealing with the medics etc not knowing my wishes over what kind of treatment I'm prepared to tolerate etc

Just a thought.

Atoms, panels, clinics and cycles

Important things first. As you know- I enjoy atoms of delight- events which have an immediate and pleasurable impact without the need for words or explanation. On Sunday I had not so much an atom of delight as a near nuclear power station. Watched Cardiff singer of the year and felt I'd been involved in something truly special when I hear the voice of the 23 year old singer from China. If you have a replay facility on your telly- have a listen! What a remarkable voice.

Solar panel system almost completed now but waiting on a bit from my suppliers so in about a week or so I should ( fingers crossed) have a solar panel system up and running for just over a £1000. Not bad- all we need now is the sun! I also got myself into a surreal position yesterday ( I was feeling a bit fed up with various bits of news) where I wondered if on the days I get very tired ( like this week) I could actually plug myself into a solar powered immune refreshing system just to keep me going. I'll have a word with Huw my consultant.

I collect clinics!! One feature of myeloma is how many bits of your body it can attack/involve in so many different ways. The latest is a referral ( Hi Helen) to a maxillo facial consultant as there is more of a suggestion now that I might indeed have osteonecrosis in my jaw though still not 100% sure yet- hence the referral to my 7th clinic. If anybody else collects clinics and if you have any doubles and want to swap one of them -just let me know.

Will I make my 5th cycle! As you know I've never completed a 5th cycle of treatment and as my paraprotein had gone up at end of the last cycle I wonder if we'll make it this time. Maureen, Huw and all the others involved are adamant though that they'll do what they can just to let me day I've had 5 cycles of at least one form of treatment. You should also know I've actually sold my cycle!- yup, cycling days are over.

Remarkable dance event- St Kilda+ Xmas

For those of you with an interest in Highlands and Islands coupled with a wee bit interest in dance, there is a remarkable dance event on 22/23rd June featuring French dancers dancing on the cliffs of St Kilda( I kid you not) and with production linkages in 5 countries. I think the event in Scotland is to be largely shown at venues in Northwest but there is apparently also to be an online webcast- times to be announced I think.
See info at www.stkilda.eu where there is info about the event/film trailers and also an archive about St Kilda and the evacuation. The cliff dancers reflect the St Kildans in the archive film rope hanging while collecting the famous eggs.

It felt like Xmas eve last night- excited about the roofer coming today to put up the structure to hold my solar panels! Catch up on sleep tonight!

Something in the water?

Couple of days ago we were told our dog has a malignant tumour in his throat- must be something in the water at our house. He's been coughing a lot and also his bark is getting deeper. The diagnosis really just confirmed what my wife and I suspected. Like many spaniels he's had a fair share of ill health and we were in fact quite surprised he made it to 14 given that he's had pancreatitis a couple of times. So holidays next few weeks etc will mean not going too far away and taking him with us as we need to track what his progress is.

I'm going through my usual bout of post steroid dip- very tired and now got the usual mucositis in my mouth and throat- but it will pass. Going to bed about 9 pm and sleeping through till 7- pretty unusual for me. Unfortunately- you know I'm being monitored for osteonecrosis( bone issues) in the jaw- I now have bone coming through my gum. I see the WGH dentist on Tuesday so we'll get an update on what's happening in that neck of the woods.

Main disappointment is my roofer couldn't come on Friday so I can't complete the pipe run on my solar panels! But he'll be here on Monday ( fingers crossed) so hope to have it up and working by the summer solstice.

Bit of a bummer

Heard today that my paraprotein has reversed and has in fact gone up again- back up to 7. I had an extra week off treatment when we went to France and seems to show the usual issue I have- I can get the paraprotein level down but without treatment it doesn't stay low for long. Mmmm! I need to reach the 5th cycle!

Dexy's mid night runners

(Message for Fred- no news on the dog yet- test results due back this week- but fair to say whatever it is he is struggling a bit)

Dexy's mid night runners( the dexamethasone/steroids) up to their old tricks after my first lot ( 20 tablets at 2 mgs each so still a hefty dose). My blood sugars shot away up and all the classic signs of diabetes have reappeared- despite my upping my insulin. Also awake until about 3 and then broken sleep until about 7.30 but better than some nights when I can't sleep. Fortunately I am down to one pulse ( a 4 day period on the dex ) and in any case the study protocol states that cycle 5 and 6 goes down to one pulse so I'll shortly be back in line with the study protocol. Will get a new para[protein result tomorrow so should know how its doing. The team are all optimistic that I'll manage my 5th cycle ( I think I've told you I've never made the complete 5th cycle in any of my many treatments) and the are all working their medical socks off to ensure that happens. Fact is- I wouldn't be here without their efforts and as you know I was predicted by one medic that I wouldn't be here on my birthday which was 5 weeks ago). So despite the effects of the steroids I'm happy to bear that small cost for being here longer.

One of the difficult things for us myeloma patients is that we often look very well though those who have seen us through the treatment also know how ill we can look. But it must be difficult to get over to folks that we have an incurable cancer when we look so well and are still managing work of a sort. One of the good things to come out of the trial ( and I hope you see my blog reflects it) is that quality of life is as important as staying alive. As I've said before if the lenalidomide kept me alive but wouldn't let me leave the house and pinned me to the fireside with my slippers and pipe( metaphorically speaking!) I wouldn't want that. I would rather have less time but be able to use it better. So all of what might seem to you to be personal information is me simply letting you and the Celgene folks that make the drug know that I'm still able and happy to be climbing ladders( despite the plates and pins I now have) installing solar panels, building gates, installing new water tanks, doing work with UHI; going to the South of France by plane and train, and generally being around with my family. All this is in the context of knowing - as always the case with myeloma- its all so unpredictable and uncertain as to how I'll be in the next week or the next few months. For example, despite feeling quite well just now I have no problem with and really quite welcome my outreach contact with the Marie Curie Hospice knowing that the hospice is not needed just now but might be further down the line- whenever that is.

I was also asked yesterday if I'd become a more spiritual person- I think that will keep for another blog- have a think yourself! I have to let you know that we went to a caravan for a long weekend at Balir Atholl caravan park a wee while ago- the caravan number was "42" which we thought quite appropriate as it is of course the answer the computer gave in Hitch Hikers guide to the galaxy when asked what the meaning of life was. So now I know what its all about!

Driving and Dex

Drove over 300 miles today and to make it a bit easier delayed taking the dexamethasone till after the jour ney as my blood sugars would undoubtedly have gone up ) as they have to today!). Having the motability car with automatic gearing made it so much easier on my left side where my plate in my elbow and pin in my leg are. So a good journey despite the serious accident on the bridge which meant it took over 5 hours.

4th Cycle and no cycle

Now starting the 4th cycle of the lenalidomide trial so the usual round of steroid stuff the next few days. After having had no drugs at all over the past two weeks I've been feeling extremely well and getting stuck into a number of things. My big aim is to make it to the 5th cycle and complete it- something I've never done before and that's my next aim.

I've also decided its maybe time to start thinking about not risking cycling too much. The pin in my leg has certainly given me some things to think about and the overnighter in hospital on Sunday night for a possible clot ( which it wasn't) has made it clear that I may be putting myself under too much strain with cycling or even walking too much( we did a lot on holiday). So the bike is being given up for now.

To complete the family medical history- our dog is in having exploratory tests at the vets with a bit of a problem. He is after all a 14 years old spaniel but looks and acts about 4 years old. I might slip him some dexamethasone to see if that can gee him up.

Solar panels this weekend.

WE've now had 1076 unique visits to this blog from about 30 countries around the world.

Hiccup and press release

Minor hiccup last night ( well- as it turned out to be). Ended up in hospital with possibility of a DVT but in the end probably turned out to be too much walking going for my leg which has the pin in it. So on the scale of things not a major issue and always best for us to err on the side of caution.

I also promised sometime ago to let you know about something else I was working on and which didn't involve climbing ladders and installing solar panels etc! Today a press release went out announcing the establishment of a new Centre at the University of the Highlands and Islands Millenium Institute. I've been working on this some time with a colleague there and also have an honorary position there as well. We have now established a UHI Centre on Rural Childhood so again I point out that the myeloma and my various treatments including the Lenalidomide haven't brought other aspects of my life to a halt. Unfortunately my timing was impeccable as I did an interview on mobile phone when I was in hospital- not the best of contexts! Release went generally as the following extract ( I'll spare you the picture!)


UHI to launch research centre for rural childhood


UHI Millennium Institute is to launch a new research centre later this year which is expected to make a major contribution to the lives of children and young people in rural areas.

The UHI Centre for Rural Childhood, to be based at Perth College UHI, will influence the development of policy and practice on all aspects of life for children born into or brought up in the country. Many current issues will determine the main areas of interest, including health, education, crime, drugs, and the experiences of immigrant children now moving to the more rural parts of Scotland.

Professor Stewart Asquith, an honorary professor with UHI, will be the centre’s acting director. He is bringing the project to fruition with Dr Sheila Lodge, the UHI dean of arts, humanities and social sciences. Professor Asquith says it will establish UHI as a major site of local, national and international significance in the field of rural childhood.

He believes that much of the focus to date on children’s issues has largely been on children with an urban upbringing. “The UHI centre will play a major role in addressing that imbalance by emphasising the very different experiences of rural children and the implications this has for their growth and development and for effective service provision,” he explained.

“This will be achieved through research, consultancy, teaching and training, and the work of the centre will be of major interest to policymakers, practitioners and those generally charged with the responsibility of caring for children in a rural context.”

Professor Asquith, who was one of the first external examiners for the BA (hons) child and youth studies programme at UHI, said: “I am delighted the centre is coming to fruition and can think of no better place for it to be located than at UHI. I firmly believe that better understanding of the life experiences of children in our rural and remote communities will mean that we can better improve the nature of those experiences for many children.”

Formerly the head of social policy and social work at the University of Glasgow, most of Professor Asquith’s research and consultancy work has involved monitoring the extent to which the rights of children have been implemented in reference to the UN Convention on the Rights of the Child.

His work has focused on two main areas, children and the law, and combating the sexual exploitation and trafficking of children, and has taken him to most countries in central and Eastern Europe as well as Africa and the Caribbean. Much of his work has been for UNICEF, other UN agencies and for the Council of Europe.

etc etc

We're back! "Auld claes and porridge"

Back from the South of France and we had the pleasure of a much better TGV so its gone up again in my estimation. Joutnery from Paris Charles de Gaulle to Montpellier took 4 hrs 50 minutes- a very fast journey. Journey from Montpellier to Paris CDG took just four hrs and 3 minutes- a very, very fast journey! Compare that with a delayed flight from Paris CDG to London and then from London to Edinburgh which took us in total about 6 hours! But a great holiday and well chosen week when I had no lenalidomide to take and none of the dreaded dexamethasone.

As we say here- back to " auld claes and porridge" as we settle into ordinary Edinburgh things though my solar panels will be attacked some time this week as I try to install them.

Blog visitors

9 more visitors to the blog and we will have had 1000 unique visits.

Bonjour!!

Well we made it- we are now in the South of France having travelled on the TGV and also having already been to the Millau bridge. TGV a bit disappointing as we seemed to be on an older one- bit threadbare carpets etc. A trick to get a seat on the TGV- make your spots obvious!!(though they are now disappearring). The Millau Bridge is stunning- a real mixture of function and design and well worth the visit.

We are in a small sea side town about 30 km from Montpellier- lovely place and suits us better than Montpellier itself.

So again- for you lenalidomide takers- whatever else it does to you it needn't stop you getting out and about. On my return my next job is to install our solar panel kit at a great saving from a professional installation.

If anyone from Celgene reads this- what is the reaction to the lenalidomide symptomatic of? asquith48@blueyonder.co.uk

a bientot

Spot check and a rash decision

Had a spot check on the rash I have. The bad news is that the spots I have from the lenalidomide ( we think) are more extensive than even yesterday but since tonight is my last of the 21 days followed by what is now a two week drug free spell, I hope they will vanish by the time I start ( or should) start cycle 4. I would normally have a week drug free but since we are to be on holiday this is now two weeks. You'll gather the good news is that we are going on holiday on Saturday and I'm looking forward to the TGV as much as the holiday ( boys and their toys according to Ward 5 nurses!).

The really good news is that my paraprotein has dropped again to 5 so in 2.5 months it has dropped from 20 down to 5- a pretty good result and explains why I don't want to be booted off the drug trial.

Also been at the WGH Dentist today who is keeping an eye on this tooth issue- still got a bit of exposed bone and also a tender bit where the bone underneath the gum is pushing against the skin. But general optimisim its just a slow healing issue and not a case of osteonecrosis. Speaking of which there is a new set of protocols for the use of bisphosphanates from the Mayo Clinic- a useful article and one you can see at- http://www.mayoclinicproceedings.com/inside.asp?AID=4344&UID

On another medical front, you will know I'm permanently on warfarin and also that I am difficult to get blood from. I've explored the use of INR monitors ( bit like blood sugar monitors) and discussed with my health practice. Upshot is that they are to buy a monitor so that they can take INR readings from difficult folks like me just from a finger drop of blood and also without sending it away to a lab. The result is also immediate so warfarin dosage can be sorted out there and then. Seems to me to be the way to go and surely must be more cost effective than the current system which involves me going in to the practice to give blood, the nurses struggling to get blood from me, the blood being sent for analysis, me calling in later for the result, a doctor having to read my file etc. Surely a great saving in time, money and frustration!

Right , getting ready for France.
A bientot.

Radio silence

Apologies for the wee period of radio silence. As I said I wasn't feeling too well last week and had to cancel a couple of things. My steroid dose was reduced again and the benefit is that I feel much better just now. Also means that I have time to fully recover from this cycle before we go on holiday to France on Saturday morning. I'm assuming we are going though I'm going in for a once over to the Western tomorrow morning to make sure all is OK.

My usual strategy when I don't feel too good is to do some physical work and this weekend Chris my son and I replaced the old lead water tank in our house for a super duper plastic one. Don't let anyone convince you that taking out a lead water tank is an easy job! Very heavy.

And when we come back from France my plan is to install a DIY solar panel kit which arrived yesterday. So whatever else, the drug trial hasn't stopped me doing things. My fear with myeloma has always been that it would stop me doing manual work which I like doing- its also the Scot in me- £900 for a diy solar panel kit is a lot cheaper than £3000 for a basic kit professionally installed!

No idea if my paraprotein has dropped any more yet and it may be that we take a reading tomorrow. One concern at the back of my mind is that in all the four different chemotherapies I've had I've never made it to the 5th cycle. I'm beginning to wonder with the recent reaction to the Lenalidomide ( lots of spots) whether I'll make the 5th in this drug trial. We'll see.

MAGIC apology

Apologies to the MAGIC nurses I was meant to be speaking to tomorrow. Been at hospital today and decision made that its probably best if I don't come along to the MAGIC day in Glasgow. Number of reasons- one is I have spots! Spots are probably ( we think) associated with the lenalidomide and apparently if they cover ( which they don't yet) 50% of my body I could be withdrawn from the drug trial. I'm also still very tired and decision also made to down my dosage of dexamethasone again. I was a bit concerned that I was being a real failure on the trial but apparently the heavy regime of steroids is hitting a number of folks. Some of my bloods are a bit lowish -and again if they drop any lower then I might need to stop taking the lenalidomide at least temporarily until I recover ( maybe with the aid of GCSF)

Add to this that I've been having chest pains and my 14 year old dog is walking up hills quicker than I am - suggestion I go back to using a GTN spray. I had an angiogram in December and suggestion then was that I didn't have angina but maybe heart issues were to do with so much chemo and other treatments. Seems again ( after a clear ECG this morning) that same kind of symptoms are back- though we know one of the side effects of lenalidomide is that it can go for the heart a wee bit. So all in all- quite a full day. But we are still going on holiday next week!!

In a spot?

Bit of a problem- I've come out in spots! Over my arms, body and legs. This actually happened at the corresponding stage of my last cycle but we put it down to a possible reaction to antibiotics. But I'm not on antibiotics this time and the spots are more pervasive than the last time- any suggestions in a brown paper envelope please!!

It also puts me in a spot as I'm meant to be giving the patient experience to a group of MAGIC ( Myeloma Advice and Guidance in the Community) Nurses in Glasgow on Friday. Fortunately I have a hospital appointment tomorrow so we can explore it there. In terms of going to speak to the MAGIC Nurses I did wonder how many would stay in the room when I went in. According to the nurses at Ward 5 at the WGH they all try to go for coffee when I come in!! ( they all know how difficult I am to canulate).

In general though I have to say that I am getting a bit tired and it does appear to be taking longer for me to get over the effects of the steroids than previously. It may also of course be the case that the lenalidomide is making me tired as fatigue is of course one of the side effects. So- always difficult to separate out the effects of the lenalidomide, steroids and my diabetes.

Boats and things

Just back from our weekend at Pittenweem- if you haven't been to any of the fishing villages in the East Neuk of Fife- get yourself there. I've always been a sucker for fishing boats and harbours and Pittenweem has working harbour so ideal for folks like me ( who even carries a VHF radio ). We were also rewarded with the sight of an old broad beamed wooden sail boat ( what kind?) which looked as if it was coming into Pittenweem but then decided to turn and head up to Anstruther ( unfortunately under power so the huge red sail came down). We of course had to follow it up the coast and watch it coming in ( a bit precariously given the swell) to Anstruther harbour. Quite a sight with the main mast broader than the men on the boat.

Great to get away but again I seem to be taking longer to recover from the either the effect of the steroids or of the accumulative effect of the lenalidomide( or both). Even on Sunday- six days since my last steroids- still pretty tired and a wee bit weak. But again if the lenalidomide is doing its job then I have no real complaints. But given the timing of our trip to France on the 26th May- getting a wee bit concerned about how I'll be when we are meant to be travelling. But we are going to France!!!

Still crashing

This is the longest post steroid crash I've had and I've felt pretty wobbly today again and with no strength or energy to do anything. Again the difference between fatigue and tiredness comes to mind- and this isn't tiredness! It appears I'm not the only one on the trial one experiencing steroid withdrawal - the dose is after all pretty high and there may be a cumulative effect.

Big Crash

Yesterday was the first day off steroids after my four day block- had my biggest crash yet and by the end of the day could hardly get upstairs to bed. Don't know how much this is the steroids or the diabetes or both but it was certainly a hard day. As you'll all know by now I try to keep physically active but guess I may have to do less as I come off the steroids.
Phew!

Down again, cars and transplants(+ John Martin)

Got my latest paraprotein count and its down again- just down to 6 from 7 but remember the first cycle dropped it dramatically from 20 to 7 so in total so fater two cycles on the lenlidomide that's me down from 20 - 6. Pretty good going. As we all know this isn't a cure but it will hopefully be buying more survival time. All very positive. Be interesting to see whether ( and in which direction) the recent reduction from three four day blocks down to two four day block on dexamethasone will have an effect. Some studies are showing a very positive effect of the lenalidomide with a lesser rather than bigger dose of steroids.

On Wednesday I also get my motability car. You'll recall that my main problems are all down my left side- plate in my left elbow; pin through my tibia and now a bit of concern about another lesion in my left arm. The changing of the clutch and the changing of gears a wee bit problematic so moving to an automatic car will help considerably I hope.

The big event is that on May 12th at 2 pm it will be three years since my stem cell transplant at the WGH. Given that I thought I might not be here on my birthday ( 1st April) this is major event for me and also time again to acknowledge the role played by everyone in my survival- what is clear about myeloma is that treatment is a real team effort with all playing what I think an equal role- the nurses giving me my treatment and struggling to canulate me through four chemotherapy regimes; Liz my transplant coordinator holding it all together on a regular basis and even now becoming a Brechin City supporter; Maureen taking me through the Myeloma IX study and now the Lenalidomide trial; Huw my consultant always there when needed and maiking the key decisions about where we go next; the regular and comforting contact with Brenda the Ward doctor; the care from Helen the WGH dentist who has a special awareness of the myeloma issues and works in close contact with the haematology team; Mr Porter the orthopaedic consultant at the Royal who has seen to my successful plating and pinning surgery; Dr Yuille who organised and monitors my radiatotherapy need etc.; the diabetic clinic who also keep in contact with haematology. Add to this the help from my Health Practice who are kept in close touch with the hospital and now the link with Barbara at the Marie Curie hospice.

This is quite a list of individuals and I have always felt that there has been joined up working. They will I hope forgive my gentle harassment when I want to know what's happening and what's next on my agenda. But in short I owe them a big thanks and without them Brechin City might by now have lost a sizeable proportion of its support!!

+ John Martin- steroid induced insomnia last night but listened to a programme about John - had forgotten what great songs Sold Air ( really 30 years old) and May You Never are.

Counts- diabetic and political, and hornygollochs!!

Counts- diabetic. As usual despite giving myself almost 10 more insulin units my blood sugars have gone up to 20 since I took my dexamethasone(steroids) at 7.30am (when they were 7.6). Pretty dramatic effect and I always know when my counts go up as my vision begins to get fuzzy a bit till the insulin kicks in.

Counts- political. Also a dramatic result with the SNP gaining more seats than any other party though we don't yet know how that translates into government. Could be that the Scottish Nationalits have more seats but can't form a government if they can't persuade others into a coalition. So maybe they've had the negative effect of high counts as well- hope they don't have a political steroid crash. And yes- to "come out" - I voted SNP. And why was it spoiled a bit by such a disaster in the voting process. Donald Dewar the father of Scottish devolutuion once said that devolution was a process, not an event. He must be turning in his grave at last night's embarassing debacle or "burach*" as Brian Taylor the BBC Scotland political editor called it using the more descriptive Gaelic word.

* PS there are some Scottish words I love to say- so satisfying in their expression. One of my other favourites from younger days in Angus was "hornygolloch" for the forkietail insect with lots of legs- I can never remember which. Maybe I'll write the next post in the Scots I used as a child- I've always claimed that at base level English is my second language- ever since the day I was belted at school for using "kirk" instead of "church". (Goodness where did that long held grudge come from!!) Seeing a hornygolloch almost qualifies as an atom of delight because you can use the word!

Clinic and cycle 3

Down at Ward 5 today for my IGG infusion. Despite the difficulties the nurses generally have canulating me, Tracy ( pretty much as usual) managed first time! But she is going off on maternity leave- how could she!! Decision made though that I can stop IGG infusions ( and resume them as needs be) and won't be going back on the zometa ( bone support drug) just yet. And when I do go back on it it will probably be a pill equivalent rather than continue infusions. So no more canulas needed for my treatment- thank goodness.

At clinic in the afternoon and again I will be having less steroids in cycle 3- one "pulse" less ( i.e. one block of four days less). Keen to see what my paraprotein is as it was tested today though takes a couple of days for the result to come through and since its a bank holiday weekend I will have to wait till Tuesday. Hopefully its gone down again.

One of my friends- who was at the xmas lunch last week is now also going on the lenalidomide trial- be interesting to compare notes and I might get him ( Fred) to write a bit in the blog.

So cycle 3 starts tomorrow with the steroids and having felt so well over the past week or so with no drugs its quite a thought to start again- but made easier in the knowledge I have less steroids to take.

As you know I also have to take warfarin for the rest of my life and just as I'm difficult to canulate I'm also quite difficult to get blood for my INR - the test which determines warfarin dosage. So I've been exploring again ( I did this last year) the possibility of buying an INR blood monitor- works on the same principle as a blood sugar monitor- just needs a drop of blood rather than ( as Hancock would say) an "armful" for lab testing. Checked with folks at WGH about its acceptability and also discussing with my GP as my practice would need to support me. But the idea of just calling in with a result rather than having to go to give blood; having to go through the difficulty of giving blood, waiting for the result; calling in for the result and involving both doctor and nurses really quite appeals. Unfortunately whereas my blood sugar monitors cost about £12, INR monitors cost about £350 just now. Mmmm. You can see more about the INR monitors at www.coaguchek.co.uk

The big issue up here in ZScotland is of course whether we will wake up in the morning with the Scottish National Party in power and Alex Salmod as First MInister. Can't believe how the BBC have ignored this possibility and the long term implications it might have for the UK.

Clinic and cycle 3

Down at Ward 5 today for my IGG infusion. Despite the difficulties the nurses generally have canulating me, Tracy ( pretty much as usual) managed first time! But she is going off on maternity leave- how could she!! Decision made though that I can stop IGG infusions ( and resume them as needs be) and won't be going back on the zometa ( bone support drug) just yet. And when I do go back on it it will probably be a pill equivalent rather than continue infusions. So no more canulas needed for my treatment- thank goodness.

At clinic in the afternoon and again I will be having less steroids in cycle 3- one "pulse" less ( i.e. one block of four days less). Keen to see what my paraprotein is as it was tested today though takes a couple of days for the result to come through and since its a bank holiday weekend I will have to wait till Tuesday. Hopefully its gone down again.

One of my friends- who was at the xmas lunch last week is now also going on the lenalidomide trial- be interesting to compare notes and I might get hime ( Fred) to write a bit in the blog.

So cycle 3 starts tomorrow with the steroids and having felt so well over the past week or so with no drugs its quite a thought to start again- but made easier in the knowledge I have less steroids to take.

As you know I also have to take warfarin for the rest of my life and just as I'm difficult to canulate I'm also quite difficult to get blood for my INR - the test which determines warfarin dosage. So I've been exploring again ( I did this last year) the possibility of buying an INR blood monitor- works on the same principle as a blood sugar monitor- just needs a drop of blood rather than ( as Han cock would say) an armful for lab testing. Checked with folks at WGH about its acceptability and also discussing with my GP as my practice would need to support me. But the idea of just calling in with a result rather than having to go to give blood; having to go through the difficulty of giving blood, waiting for the result; calling in for the result and involving both doctor and nurses really quite appeals. Unfortunately whereas my blood sugar monitors cost about £12, INR monitors cost about £350 just now. Mmmm. You can see more about the INR monitors at www.coaguchek.co.uk

The big issue tonight thopugh is whether we will wake up in Scotland with the SNP in power and Alexd

No crash this cycle!

That's it!- been out on my bike at long last and all OK. I can feel the pin in my leg aching a bit but nothing of a problem. So hope to build up to more cycling and getting a bit more exercise. I can use the next few days before I start my new cycle on the lenalidomide to get some cycling in.

If anybody knows anything about solar panels( the photovoltaic ones) I wouldn't mind being able to ask some advice. asquith48@blueyonder.co.uk

Drug free and solar panels

Not a lot to say- now in the drug free week and all OK. Minor issue at end of week with lots of tiny " blood blisters" mainly on my arms- indicative of maybe having low platelets according to research nurse so we'll keep an eye on them.

Given that I had no steroids last week and now no revlimid/Lenalidomidi until Thursday- feeling pretty good. Today is a big day- about to see how I get on on the bike as I intend to go for a short leg testing trial ride.

Other main issue- had to take down my wind generator- too much vibration on the wall and noise when it was very windy so I'm going down the solar panel route. What I don't understand is why Maureen my research nurse at the Western went white when I told her I'd been up on the roof dismantling the genherator and securing the solar panels!!

Paraprotein result

Just heard that my recent paraprotein result is still 7. You'll recall that after only one cycle it dropped significantly from 20 to 7. The paraprotein test done last week was two weeks in advance of when it would normally be done for the study so no disapointment( though it would have been good to see it falling again!) as we might get a more accurate statement next week when I'm back for the monitoring at clinic.

Gas at a low peep, xmas lunch and security guards

Now in the drug free week of the cycle. As I had the steroid dose reduced its also meant that the past few days have been steroid free and means there will be no big crash tomorrow or the day after. So a week free of things to deal with. However, haven't got off quite scot free as I've had a chest infection for a couple of days now - did wonder why I was sleeping 8 hours or so then sleeping through the day - but its being dealt with by the trusty anti biotics. I have a supply at home as we know I need to start them quickly without having to go to hospital or the doctors- quick phone call or email to confirm starting them is usually enough. But my gas has certainly been at a low peep for a couple of days and antibiotics tend to make feel a bit low sometimes as well as queasy.

Three of us met for Xmas lunch- been trying since before Xmas to make it. One of the others is also a myeloma patient and its always difficult not to try to catch up and compare notes. Means though that the third member of the xmas festivities is well versed and well aware of myeloma and its implications. There 's something delinquent and pleasurable about having xmas lunch in April.

Also been working through the process for getting my car from Motability. Part of the process involves taking a form to DWP for certification etc. This involved today going to the Job Centre( why the job centre?). Although job centres are much better equipped and much more user friendly there is still an edge to them that makes them a bit unpleasant for all concerned. Even before I was allowed in I had to let two security men know why I was there. Once in there were more security guys walking about and in one case one of them went to stand "meaningfully" beside one guy disagreeing with a staff member. Really can't be much fun for either staff or clients working in such conditions. It also occurred to me though that as there are now no behind screen staff- its all open plan- the issue of staff security must be a consdieration. Bit depressing though.

"Yew trees and Steroids-more good news".

As some of you know, Elspeth my wife was treated for breast cancer and she too was/is involved in a drug trial. She was given Taxitere in addition to her other chemotherapy, radiotherapy and surgery. As we understand it, Taxitere is derived from the yew tree. To cut a long story short - we were back at the WGH( this time for Elspeth!) on Friday as part of the ongoing trial monitoring and she has been told she no longer needs to be monitored as she is as clear as anyone can be. Great news and another box off the checklist. She is still taking Tamoxifen but that is also to be reviewed shortly. Given she/we had a scare in January about possible return of the cancer this is great news.

In terms of the lenalidomide trial, decision made- even before I asked about it, that I remove one of the four day blocks of steroids from my 2nd cycle. This is all within the protocols of the study though as I understand it once there has been a dose reduction, it can't be increased again. Given the very positive result from the first cycle I have to confess that reducing the steroid dose is pretty welcome given what it was doing to my BMs etc/. The crash days were getting harder to recover from and also getting harder to keep my BMs down despite additional insulin dosage.

Great weekend in the Highlands and made it to the top of Cairn Gorm ( by the mountain train I hasten to add !). Also went to Perth to see the football -St Johnstone v Queen of the South. So again- whatever else- the lenalidomide hasn't stopped me getting out and about.

Crash day and viaducts

Yesterday was a real crash day- the second day off the steroids and not unexpected. But I had two hospital appointments so again got very very tired. By the end of the day my battery was really empty and I could hardly speak. I'm writing this the next day at 6 am and already feeling much better and on the way up again.

First appointment was at Ward 5 for a review of my bloods etc for the Lenalidomide study. Again all is looking good and whatever else is happening I do seem to be tolerating it all pretty well. Even the research nurse was as excited as I am about my paraprotein results so another extra paraprotein was taken yesterday to see if it continues to come down at a rapid rate of knots. The issue of whether my Dex levels might be reduced was also raised and that is to be discussed with Huw my consultant- might be that I don't in any case need such high levels and given effect on my blood sugars might be good to reduce them a bit.

The other appointment was at Clinical Oncology where they are keeping an eye on the lesions in my arms and legs. In short, radiotherapy has helped the pain in my leg but the actual pin insertion surgery itself still giving me a bit of a problem. Also- CO has been told that my left wrist might also need plating or pinning at some time and so is being monitored by orthopaedics- again impressed by how my care is all " joined" up across departments and hospitals.

You all know how much I'm looking forward to getting on the TGV to the South of France- on my wish list. Also on the wish list is to see the Millau Viaduct. We've just discovered the Viaduct is only an hour from where we will be staying so a trip is on the books - great stuff! You can see it at http://en.wikipedia.org/wiki/Image:Wiadukt_Millau.jpg and more info at http://en.wikipedia.org/wiki/Millau_Viaduct#Description

OK- its not the South of France but we are away to a caravan in the Highlands this weekend- and looking forward to it as much as the TGV! So Blog silence for a few days!

Teeth and tiredness and bikes

Better news at the WGH Dentist- less concern about the healing of my tooth socket and so less concern about things like " osteonecrosis" -so hopefully we can eventually cross off the checklist of things to keep an eye on. Another review in a month but all looking much better.

Been very, very tired today and kept falling asleep and this is me on steroids! Discovered my blood sugars were away up again- at a high 22- and this despite giving myself even more insulin. I guess there is an accumulative effect of the Dexamethasone by the end of each 4 day block. But I might ask if- as other studies are showing- whether a reduced dose of Dex might be a possibility. The baseline however is that I don't want to do anything to interfere with what seems to be positive effects from the Lenalidomide. I have a blood monitoring session on Thursday so might raise it then. Also be good to have some sense of how others are doing on the trial.

Not been on my bike yet- left leg still not healed properly from the insertion of the pin. Maybe by the weekend I might get out on it. Almost there and its a bit frustrating not to have been able to cycle in the good weather we are having here.

email

I see from the tracker that there are a number of visitors to the blog from all over the world. If you have any thoughts on the blog or want to let me know about your experiences just email me at asquith48@blueyonder.co.uk - this is much easier than having to go through what I didn't realise was a compliccated registering process to be able to make comments.

Teeth, football and atoms of delight.

You'll gather from the timing of this post that the steroids are keeping me awake again. Last night I had about one hour sleep having started the steroids though tonight a bit longer -about three. I also lost control of my Blood sugars and despite injecting more insulin found my BMs at over 21 with all the classic signs of diabetes. I'm also on antibiotics so that may not have helped though the chest infection effectively gone. Need to take more insulin than usual today. The great paraprotein result is still resounding but I have a wee bit of concern about this bone issue in my jaw and have to see the Western General Dentist tomorrow. The socket where I had a tooth taken out out over two months ago still hasn't healed and I have bare bone and also a sharp ridge. We'll see what's said tomorrow but "osteonecrosis" a possibility and my Zometa ( bone support drug) has been stopped for now as it might be contributing to all this.

But not all bad news by any means- finished building our little bit of decking and I now have my wind generator up on the roof and working as are also my solar panels. Still got to tweak the electrics a bit and fit a new more powerful generator to my exercise bike as a third source of power. Also, Brechin City have made it to the play offs with a chance of being in the First Division next year. I'm not sure I can bear all this excitement!

I've also started collecting what I've called my Atoms of Delight- after the phrase by Neill Gunn ( whose writings I like very much). An atom of delight is something that simply happens to you and give immense pleasure- often from the smallest of things and doesn't need any thinking about it- it just happens. It can also of course move you to tears just through the intensity of it. Since I've been on the myeloma and treatment trail I seem to have come much more open to these atoms of delight and consider them one of the great gains I've got from my myeloma. The kind of thing I mean would be ( and I did say they could be the smallest of things)- opening an oven door and getting the feel of the heat and smell of the food; catching a smile on Elspeth's face; the brouha of our children when they're all back in the house; suddenly hit by a piece of music that can take you back to another time and place. In fact anything can be an atom of delight and it can catch you at the oddest of times.

Cycle Crash!

No- haven't fallen off my bike yet. In fact haven't been on my bike yet as the pin in my leg still giving a bit of trouble. The cycle crash is as a result of coming off the steroids again after Days 1- 4. of the Cycle ( now into my second cycle). Day 5 I usually feel tired but OK. Day 6 seems to be when it hits me and its really hit me this time- very tired and sleepy. I do though also have a chest thingy and am on antibiotics for that- so that maybe contributes to the tiredness too. I also built a decking area in the garden at the weekend when on the steroids so maybe some of it is self inflicted! But there is something about two days after the steroids when my body does slow down a bit and I can feel all the aches and pains. But not a major issue. And on the scale of things not a worry- especially after the great paraprotein result.

What a surprise!

Really something to hear today that my paraprotein level has dropped so dramatically- from 20 - 7 after little more than one cycle of lenalidomide. Speaking with Huw my consultant last week he suggested we might see a drop but not to be too worried if it didn't yet show any effect ( and of course that it might have no effect is always a possibility- given how resistant I seem to have been to other forms of therapy).

As you'll have gathered from my blog I have in fact felt as if I'd been tolerating the lenalidomide quite well - despite the effects on my blood sugars of the dexamethasone- but the real test for me is always the paraprotein level- so good news! It also makes any thoughts of having to tolerate more treatment much more bearable when such results as this come through. Given quite a lift to my wife and kids as well as they have to live with this so nice to have a goody rather than a baddy.

Also helps make us address other things with less worry- eg we have now booked our holiday to near Montpellier and thanks to the nice folks at Freedom Travel ( who specialise in medical insurance) I'm covered for a week for the remarkably low insurance premium of 97 pounds and covered for everything except for Brechin City losing when we are away. I'm also taking on a few bits more work which I might tell you about sometime.

The only slightly downside today is again the dex has been keeping me up and I had little more than two hours sleep last night. Still I had three folks singing to me in my ipod and I suspect they don't perform regularly together. Willie Nelson was singing On the Road Again- a real upbeat song associated with family camper trips; Dougie McLean- the Scottish singer writer was singing about "Strathmore" where I come from and the track starts and ends with one of the loves of my life- an old Ferguson tractor (I spent all my school/student holidays working on farms in Strathmore and driving tractors and one of Elspeth's fears is that I turn up one day having bought an old grey Ferguson tractor- and why not?); and lastly Dietrich Fischer Dieskau singing Mache Dich Mein Herze from the St Mathew Passion- what a voice. I think you'll gather my musical taste is eclectic - or all over the place is maybe a better description.

On working on farms and tractors I've just read the Derek Brownless article in Myeloma Matters where he asks Why him? Why did he get Myeloma. In my case I've never really asked why I got it but would like to know how I got it. I know there is a view that pesticides/organophosphates might be an issue- on the farming front most of my work was on fruit farms and my job- completely unprotected - was to spray all the raspberry fields with chemicals such as malathion etc etc. No protective clothing. No training on how to spray or handle chemicals or spillages- very often over me. I wonder.

Great News- paraprotein drop!

More later but just heard my paraprotein level has dropped from around 20 ( at the beginning of the trial ) down to a remarkable 7 already. I think I like Lenalidomide!

Things I forgot to say

Meant to be at a wedding today but can't go due to illness. Not me! Elspeth unfortunately has a very bad throat infection and practically lost her voice and I'm heading for it so no wedding.

Talking with Maureen my research link nurse prompted me to recall a number of things that have happened that I should really let you know about.

In the bigger picture, the trial requires that - assuming I get clinical benefit from the Lenalidomide- I should have no less than six cycles and can go on if necessary until February 2008. This sound like hard work on its own but in my case its a real test because in all the treatments I have had I have never made it past the 5th cycle. My first treatment was the C-Vadd but at the beginning of Cycle 5 I had a pretty serious pulmonary embolism which could have carried me away but didn't. The C-Vadd was stopped and I went on to autologous stem cell transplant after a recovery period; I then had Thalidomide and Dex and this was stopped I think just on cycle 4 or 5 because I had I think three blood clots and given the clot risk of thalidomide the risk was maybe getting too high; I then had Velcade and Dex ( Dex appears prominently in this story!) but that was stopped early as well as was pretty ill on it ( which was when I was diagnosed diabetic and we'll never know what it was that was making me ill) but the slow reduction of my paraprotein was enough for Huw my consultant to say halt; then I had Z-Dex which was again stopped after the lack of clinical benefit at about cycle 4 or 5 . So the jury is well out on whether I'll make the 6 cycles on the Lenalidomide study and hopefully get some benefit. The irony for me was that I sailed through my transplant ( not underestimating how difficult it was and that I managed to pick up ecoli septicaemia)- but was home within 14 days- a good result. But I do think as I've said before- my treatment costs must be nearing the figure of the GDP of a small country.

In terms of the wee picture and the trial- I forgot to tell you that I've had a few things to relay to Maureen and Brenda the Doctor at haematology-

bad heartburn/reflux the first few days on lenalidomide- which I rarely suffer from and so given omeprazole to counter that.

Sore mouth and ulcer which I'd expect but able to address with the trusty chlorhexidrine ( my favourite the red one)mouthwash which I'm well familiar with now

Couple of bad ( I did say I'd speak openly) bouts of diarhoea which we don't know if drug related ( it can be one of the side effects) or a bug so we'll monitor during cycle two

Very slight neuropathy in my left hand- again the left side of my body where all my other main issues are. Nothing serious but enough to keep on record for the trial. I had this on the thalidomide and the Velcade as well as I recall.
Right - off to build something.