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.