Dear Stephen,
I think there are two ways you might be able to go with such an incredible result.
You might be able to take the Rev for a while if you get funding and therefore delay transplant if you are really dreading it. If you relapse, there is a possibility that another med will get you ready for transplant. You must also check how long they can keep your stem cells from before, and whether they can harvest new ones.
As far as meds for side effects – I don't know how authoritative I can be.
When I had an anaesthetic at a younger age, I vomited for about four days and was told they had run out of options to control the side effects. A few years later, after another anaesthetic, I was given other meds and felt only slightly ill. I asked how this could be possible and was told that, in general ,as the years go by, there are increasingly more effective ways of reducing nausea. I've also heard some patients say that each transplant can be different, even for the same person. However, there will never be a cast iron guarantee of a reduction in suffering.
I imagine that your treatment options might be constrained/partly determined either by funding options, 'current good practice,' or the opinion of your consultant.
There is something I have done on a couple of occasions when I've felt really challenged by nausea or side effects. I've done this because I'm not very brave. This is not a medical recommendation; it would have to be checked with a consultant…… I've taken a sleeping pill that has previously been approved by my doctor, and somehow, being drowsy for a few hours has helped me cope, at least during a long night. I hope you will never feel bad enough to wish to be knocked out, whatever you do.
I'd like to remind you that some drug treatments that we might employ instead of a transplant can have difficult side effects as well. I've been on Velcade/cyclophosphamide/Dex recently. During the first four cycles I thought I was sailing through it. Then suddenly I got pretty severe nausea, diarrhea, fatigue, and I've spent a lot of time in the past six weeks in bed. I've mentioned to my husband, that while this wasn't as traumatic as my transplant, the last few weeks have been as difficult, as say, my first month at home after my transplant. Today I've had a few hours of feeling better and have even been able to enjoy a meal, so maybe my state will improve.
I think the main thing to remember is that so far, your myeloma has been brilliantly responsive.
Good luck,
Eva
