Hi Dai and Eva
Dai thanks for starting this very interesting post and Eva for your very interesting comments.
There is definitely a pathway from which there appears to be little scope for deviation. When I raised the issue of whether the SCT was the best option for me given the trend in the States against, my consultant nearly had a fit! She said it was the gold standard treatment and she would be negligent if she didnt give it to me. Well I have had it and am 7 months post transplant and in remission for the time being. I was initially on the myeloma XI trial and randomised to thalidomide but had to come off the trial after 1.5 cycles because it didnt agree with me, partly due to skin rash and partly due to severe neuropathy (not just peripheral). So guess what was offered to me off trial? Yep Velcade, known to have PN as a side effect. When I asked why I was being given Velcade they said that I might not get PN as a side effect with Velcade – I might react differently as it was a different drug. That I suppose was possible. I asked what else I could have and they said nothing else, just this and not revlimid because they wanted to keep that option open for further down the line. So I had two cycles of PAD (Velcade, Dex and Doxorubicin) and that brought my light chains down to normal range and my bone marrow to less than 10% and also gave me neuropathy!
Just after my SCT I was recommended to have a mini allo transplant so I guess that is possibly thinking outside the box by my very pro transplant consultant. I made the decision to have it but ultimately a match couldnt be found. At that time I found out that I had a chromosomal abnormality called mono 13 which meant a poorer outcome and may mean I could relapse more quickly. Because of this, I asked if I could have revlimid as maintenance therapy but was told no as no defintite evidence that it prolonged remission (I think there is) and also to keep it in reserve otherwise running out of options but clearly the main reason is because there is no funding.
When I was first diagnosed, I asked what was the best treatment for me but my consultant couldnt give me a striaght answer. I now realise why. Because its not about whats best for an individual its about what is available through NICE or dependent on whether I went on the trial. To be fair to her,she wouldnt be able to predict what treatment would work either as everyone responds differently and has different side effects.
So I am not at the stage of first relapse yet and I hope I wont be for a long time but have already experienced the effects of the funding criteria.
Eva, y0u dont say what treatment you are on since you relapsed and whether your Prof is recommending a second transplant, I would be interested to know.
Take care all
Wendy
