I had my appointment with Dr Tuegar at the Countess of Chester Hospital. I normally see Dr Lee but he is off on his hols. Today was to find out how my paraprotein was doing. The took the blood test last Thursday and based upon the result we were going to decide what to do over the next few weeks while I wait for my transplant. I've mentioned before about the neuropathy in my feet and that why they didn’t want to give me any more Velcade and over the last fours days I have been taking just the Dexamethasone on it’s own.
The time before last my paraprotein was 12 and before that 10. Well today I was told it was 18, so it’s going in the wrong direction. This puts me in an awkward situation as to what happens over these next three to four weeks while I wait for the transplant.
The plan at the moment is see my paraprotein is on Friday based on the blood they have taken today. Unless something miraculous has happened over the last week with the Dex, this is going to be either higher (which I expect) or at least stayed the same. Then on Friday we will decide which way forward we go. Either stay with just Dex (which I doubt) or go onto Lanolidomide (Revlimid) for a few weeks. If I go onto the Lanolidomide I have to consider the implication that it might have on my body, having something else new, just prior to the transplant as well as it’s effectiveness over such a short period of time. It may not do anything in just three or fours weeks.
So what is the worse case scenario … well my paraprotein could continue to rise prior to my transplant date (first week in Oct) if it rises too much, they may have to cancel the transplant as it wouldn’t be worth doing as the SCT wouldn’t be effective whilst it is still high. In that case it would have to be delayed until we got it back under control again. Hopefully that wont happen though and we can keep it under control over this month and keep it down somehow.
There is no way of knowing if it would have stayed down or gone up if I had started on the Lanolidomide four weeks ago after cycle 6 of the PAD when it was first discussed. I still could be in this situation. In the ideal world I would be in hospital now with my SCT completed on starting recovering (actually in the ideal would I wouldn’t have cancer at all, but I’m sure you get what I mean). The problem is that they only have so many beds and lots of people waiting and you can’t control how long it will take before someone is well enough to go home. I understand the difficulties they have and position that Edwina is in in coordinating all of the transplant. It’s just my usual luck that it’s causing my problems having to wait the few extra weeks..
Lets just say that I would be more than a little disappointed if after all the treatment and pain over the last six or seven months that I have to delay it and try something new