11/05/20

First, the good news - the results of last Tuesday's blood tests show the paraproteins as still undetectable, and everything else is normal or not too far off.

The nearly as good news - the left hip problem that has been bothering me for a few weeks has moved on a stage. It was OK first thing this morning, got a bit worse, and then while I was starting to make the morning cappuccinos I had a vicious sharp stab of pain in the area, followed immediately by a collapse of that side and another slightly lesser stab (and a certain amount of bad language...) It felt very much like the groin pain the day this all started - the kind that tells you something bad has happened deep inside. Except that whatever happened seems to have been good - I've had no more trouble with it today. For weeks I haven't been able to bend as far to the left as I can to the right, but today that's evened out completely. I'm not celebrating too much, because it remains to be seen how it is tomorrow morning.

I finally had the 'phone consultation with haematologist Dr.Chowdhury. We decided not to do any further investigation of the hip problem at this stage, and also to put off any thought of going ahead with transplant for the foreseeable future. He also agreed that with all the new treatments coming along, there may be a case in a year or so's time for changing direction and avoiding transplant altogether. Despite all the effort (and taxi fares) that went into stem cell harvesting etc. at The London Clinic I'm actually a little relieved to think that the transplant may never happen. There are risks, as well as the very long recovery period. I'll still go through with it if it seems to be the best way to go but TBH I'd be happy to avoid it given a decent alternative.

In the meantime, rather than waiting for the paraproteins to start creeping up and going back to a couple more cycles of DVT chemo (more than six cycles are not recommended, and I've already done four), his advice is to go onto a "maintenance" treatment in the hope of keeping the PPs down and the myeloma inactive for as long as possible. That means low doses of Lenalidomide (aka Revlimid) and the familiar steroid Dexamethasone. He says he has one patient who's been on that for seven and a half years, and it's what I would have been on post-transplant. There's some paperwork to get through because Lenalidomide is a variant of Thalidomide, manufactured by the same people, and carries much the same risk for pregnant women. It's also not available on the NHS (except for trials), and the fact that you can only get it privately in the UK is one of the main reasons why we decided to go private. That may have been a wiser decision than we thought at the time.

So, after a long period of "limbo", things are starting to move again. I should be starting the maintenance treatment next week, and then with a new drug and combination there's a whole world of potential side-effects that I may be hit by...