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.

I want that one!

New study showing lower rates of Dexamethasone as successful with Revlimid/Lenalidomide - and maybe more so - than higher rates of Dex.
http://myeloma.org/main.jsp?source=link&source_link_id=2480&type=article&tab_id=1&menu_id=0&id=2056

Cycle 2 Day 1. Bicycle 2 Day1

Had bloods etc done to make sure I was OK to go on to cycle 2 of the Lenalidomide. All OK and in fact my bloods in general haven't dipped as low as I had thought they might-in fact they aresurprisingly good. So Day 1 of the second cycle now started and had the lenalidomide a wee while ago. I should have said that my paraprotein was unfortunately back up to about 20 or so( it was at 47 when first diagnosed) - the hope being that the Lenalidomide will bring it back down or at least stabilise it. I had a paraprotein done today but it will take till next week to get the result so we'll see whether any effect or not yet. Looking back over the first 28 days - despite the usual moans about the Dexamethasone- it 's been better than anticipated. Long may it continue. Also confirmed I can go on holiday in May and TGV now booked up to take us through France ( it reached 359 miles an hour earlier this week and set a new rail track record).

One of my friends who also has myeloma will also now be involved in the lenalidomide trial so he (Fred) might chip in now and again as we compare notes.

I was to have my zometa ( bone support drug) and IGG infusions this morning but decision made that I should not have any more zometa while there is concern that I might have the problem of bone issues in my jaw/tooth socket not healing. So zometa stopped at least for a wee while. Also the usual problem in trying to get a canula in for my infusion and asked again if I'd consider a hickman line which I'm really not too keen on. Agreed that if I go back on the zometa I can try a tablet alternative and by that time might also be off the IGG- so no need for a line or going home from hospital like a pin cushion.

Bicycle Day 1- plan is to get back on the bike at the weekend. I've also converted one of my bikes to self charge the old Sinclair Zeta motor drive from a dynohub with a voltage doubler on it- so that when the battery of the drive runs out I can charge it again as I cycle. So- Bicycle Day 1 at the weekend.

Day 28 and talking to the moon

This is Day 28 of cycle 1 and tomorrow I'll start Cycle 2 when the fun all begins again. Unfortunately, my diary has made day 1 of cycle 2 a bit heavy as before I get started on the Revlimid /Dexamethasone package in the afternoon I have my Zometa ( bone support drug) at 9am followed by my IGG infusions. Though this isn't disastrous- in my case I usually feel a bit flu like after the zometa- just means I rattle and squelch for a wee while with all the drugs going in on one day. In terms of how I've felt this week ( the drug free week)- I had a low couple of days when I finished the last lot of steroids but have gradually picked up and feel much better now. I guess that's how its all meant to work out- that by the time I start the next cycle I've recovered from the one before. Certainly needed the break.

If any of you have followed my diabetes and blood sugar results at my other website I need to make sure you know that the diabetes folks want me to keep my blood sugars slightly higher than normal- aiming for a 7 or 8. I think the thinking behind this is that given my blood sugars roller coaster and go very high with the Dex they don't want them to plummet at the other extreme and put me at risk of a hypo. So- a slightly higher than normal safety margin built in.

One of the things I'm becoming increasingly aware of is that I'm less concerned about my survival- how long will I be here? What will it be like etc? and more concerned that my family will be OK. This doesn't mean that I don't want to stay around as long as I can- I DO!! But just that I'm quietly and happily resigned just to make the best use of the time I'm able to have- whatever that may be. Probably my TMTMTM ( Theres more to me than myeloma) principle kicking in again and don't want to waste time fighting it all ( you may still -I hope- find yourself reading this blog next year!). Much more concerned that Elspeth and the kids are all OK. In that respect I came across a wee present for Elspeth ( those of you who are not romantics be warned- romantic alert coming up).

I've been a Sade fan since day one when I first heard her and she was unfashionable in the 80s. Hidden away on Lovers Rock ( its great treating music as more than musak- you listen to the words as you're meant to) is a beautiful wee song called the Sweetest Gift- about speaking to the Moon. In my Dex induced sleepless nights I've done a lot of speaking to the moon and the Sweetest Gift captures beautifully the wish that the people you care for are looked after. One of the nice things about being around is still being able to look after folks who look after you. Have a listen to it if you can. But be warned- you will need a pack of hankies.

the wife's tale

Well, here we are nearing the end of the first Revlimid cycle. Stewart's experience has been better than we dared hoped, even taking into account the fact that he is still recovering from his leg surgery. Once he got rid of the crutches and could hop on and off buses (literally!) with his bus pass and drive again there was no stopping him on the good days and on the less good days the main thing slowing him down was the fatigue that comes from being a steriod/Revlimid insomniac. In fact, he's been a hard man to keep up with over the past week! He has been working on his energy saving projects and has been to several meetings with an American colleague and friend we were also pleased to be able to spend some social time with. He has also had trips to Perth and to Glasgow and took up the laminate flooring in the hall and sold it for £1 on Gumtree while I was out for a couple of hours.

Yesterday, Stewart's birthday, was a red letter day - not only because we had a very sociable lunch with our kids and some good friends but,on a more serious note, because he was here not only to celebrate it but to enjoy it too. All in all, if being able to live life as normally and as fully as possible is the yardstick, compared with the months of treatment Stewart has had over the years since his diagnosis, this past month has to be one of the best. More of the same would be just great.

April Fools Day and I'm still here!!

April Fools Day- my birthday! ( explains a lot about my sense of humour- I defy anyone to go through school in Scotland with an April Fools Day birthday without bearing various scars!). This is an important birthday for lots of reasons- the main one being that I got the message from one medic last year summer that I might not make my next birthday. Well bugger that- still here and still intending to be here next year. I have to be- I have a blog to write.

If those of you with diabetes and dexamethasone issues are interested - I keep track of my blood sugars at http://www.asquith48.pwp.blueyonder.co.uk/Asquithmedical/outlookcal.htm Lets you see just how much they are affected by the Dexamethasone and then how quickly they settle when I'm off the dex. To put in context- my insulin is Novomix 30