Thursday, 5 July 2007

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..................

1 comment:

Don said...

My opinion: Stewart's Revlimid is really about Stewart, Elspeth, myemoma, and life. I hope you'll keep right on blogging when you can.

Bless you