Saturday, 27 December 2008

Time, uncertainty, myeloma and treatment cycles

I've just noted a comment from Don to one of my recent posts in which he comments on the time involved with myeloma treatments. For me its time AND uncertainty which make myeloma a bugger to handle. The time is certainly an issue and even in the last two weeks I've had about 5 different appointments . But myeloma's effects also mean that I have other issues which require other specialists. For example, I now attend the hospital dental clinic at the WGH in Edinburgh and the Dental Hospital because of the osteonecrosis fear in my jaw; the diabetic clinic because I immediately become diabetic when I go on steroids- requiring immeidate insulin therapy and then it all stops when I come off the steroids; radiology clinic for my radiotherapy assessments etc( I've now had radiotherapy on legs, arms, sacrum, back, both shoulders and new radiotherapy about to be started; orthopaedics because of my bones and now have three bits of metal in me; urology for obvious areas of concern; cardiology for what turned out to be chemo induced angina( we think); and as Don points out- all the visits to medical practice- Phew, I'm awa' for a lie doon! The joke with Maureen and Liz- the two nurses who have had most to do with me have identified that one of the clinics I haven't been to yet is gynaecology but we're working on it.

But the uncertainty( Don, Cameron- for you too?) is also an issue. I never know quite when I'm going to be ill and so holiday trip planning becomes an issue. I also never know when I'm going to be fatigued( not tired but fatigued- a big difference!) and again this affects what we do.

So- what's happening now. Went to haematology clinic before xmas and my paraprotein result wasn't through but the prediction by all of us was that it would have gone up. My prediction was that it had jumped to 44. But decision made that it was time to go back on some form of treatment and that would be thalidomide. But because I don't like what thalidomide does to me, Huw my consultant suggested I have the xmas/new year spell free of treatment and start taking the pills ( as they say!) on 2nd January.

Had great xmas day when Elspeth and I went out and had a meal- first time we've ever done that while the kids ( Kids?? Come on Stewart, they're 24, 30 and 32!!). After a great meal we then watched my favourite characters Wallace and Gromit in their newest adventure- A Matter of Loaf and Death!!( Bit Freudian?). Boxing day I got an email from Huw ( Consultant and as I've said- everybody needs a Huw) to say my paraprotein was through and up at 43- so my prediction was out by just 1. Not unexpected. Then asked him iof he'd seen my newest x ray of my right leg. Again as I'd predicted( if you have myeloma for a while yyou get used to self diagnosing). Answer in a few hours was that I now have lytic lesions in my right leg and radiotherapy now needed there. I must have the most photographed body ever! So in short the myeloma beginning to gain the upper hand and hopeful that the thalidomide will check it for a while.

On a general note I have to say its great being able to communicate woth the medics by email- it means I get decisions made quickly and also can reduce these visits and time involved. I do though try not to over use and exploit that facility. But it also has certain advantages for the medics- less time seeing me, no need to actually see me etc. I can also see the time ( and had indeed suggested it as a research project in another life) when we could be contacting the medics by video conference to discuss and let see what's haddpening.

Right, can't stop here chatting- got bikes to fix. As well as my Moultons I'm now building a DIY recumbent bike- in the hope I might get out on that before it all goes haywire. And as you all know I'm pretty mean so building my own and not paying out a £1000 appeals to me. I'm so disappointed that I'm following plans to Build a Recumbent for 18$ but can't get my costs any lower!! ( If interested see ). Its my most recent treatment cycle!


Don said...

Treatment cycle indeed! Love that. Might not be any treatment more important than that which keeps us excited about life.

I consider myself so very lucky to have a wonderful family doc who spotted the myeloma early enough to head off injury from the myeloma, then lucky again to get into a trial of pomalidomide (CC-4047) to halt the bone damage that was showing up on PET scan. As a result I've never had symptoms from the myeloma, and only mild ones from the treatment.

Preliminary results from that pomalidomide trial, presented at ASH this month, show that pomalidomide can turn myeloma around even in some people for whom thalidomide and Revlimid no longer do any good.

I know there was a phase-I trial of CC-4047 (then called Actimid) in London at the Thomas Guy House, and I wonder if they have anything else going on with CC-4047.

I am so amazed at the energy that you still have, in the face of all that the myeloma does to you. Go Stewart!

Roobeedoo said...

I am very impressed that your doc communicates by email. It always feels as if my husband's consultant is afraid to write anything down!(He has MM too - currently "stable" with an m-spike of about 1.9.)

rutha said...

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