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Wednesday, 20 July 2011

Apparently I’m not Normal

I know what some of you are thinking, that you have known I wasn’t normal for quite a long time!Alien Eyes

I’m actually talking about my Myeloma! I’ve been to the hospital today, I had an appointment with Dr Lee. As I’m not having my Stem Cell Transplant until September and I’ve had 6 Cycles of the PAD regime, we needed to discuss what was going to happen in the meantime. My paraprotein has plateaued at 11, so having further PAD cycle would not improve my situation in fact Dr Lee is concerned that it could in fact make it worse as each PAD cycle I have weakens the heart and will increase the pain I have been suffering in my legs caused by the Neuropathy. So what would be the benefit, well it would keep the paraprotein level at 11, but the cost of it could be seriously detrimental. Another alternative would be to do nothing, but we don’t know if the paraprotein level would increase, which would make the last six months pointless or if it would actually stay at 11. With the way my Myeloma has been very aggressive, it is unlikely to stay at 11, so we cancelled that idea out.

Dr Lee explained that my case is very unusual and not normal at all. To be my age and the first transplant I had to have had no effect at all and now to have a period of waiting before the next transplant is the usual case scenario. So he wants to discuss it further with his colleagues before making a decision as to what to do, so another appointment has been made for next week.

However; there is one idea he has that he is going to discuss with them, and that is to put me on Lenalidomide(Revlimid) in the short term. Lenalidomide is normally used after the transplant and normally when the paraprotein has started to come back again. The idea is that it will keep the paraprotein low, maybe even reduce it more and it is way of knowing if it will be an affective treatment for me in the future. There is only one problem with this and that is that Dr Lee will have to authorisation from the people who look after the purse strings, as it is very expensive. The cost is about £52,000 per person per year. Which when you work it out isn’t that bad .. I only need it at the moment for 8 weeks (£8,000) so Dr Lee, if agreed by his colleagues is going to explain to them the reason why he wants to use it and why it is such an unusual case.

I hope they say yes, as there aren’t any alternatives at the moment and I would like to think that the treatment I am having is the best and not governed by some financial decision that may put my life at risk or at the least the long term success of my transplant.

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  1. Sean, I will be intending that you are getting all the approvals needed to get whatever medications are required to prepare you effectively for the transplant, whether sooner or later. This is for the highest and best good of all concerned, so be it and so it is! Whoooooooo! I don't know how old you are, but my relative was 43 at the time of first transplant (auto) which didn't work, had a second auto which also didn't work and then the medical team pushed ahead quickly for the allo with a sister which has worked and the MM patient is doing very well at this time.... I intend that you are having good results as well!!!

  2. I don't see your case as unusual at all. Seen it plenty of times. Tim's auto was completely ineffective too. Gosh I sure wish you folks over yonder had more access to Carfilzomib.(VERY effective with less to no PN and a very tolerable drug)I'm told it is available by clinical trial there but people are chosen randomly to be on the arm with it or without and so many drop out when they are not chosen to get the drug. Might be worth a try though if someone near you is running the trial.
    Makes me CRAZY to know that you could get it here easily. Any of y'all wanna come stateside, I will clear out my spare room POST HASTE. If you have clinical trials there for Pomalidomide, that would solve the cost problem and that is the newer generation Revlimid.

  3. How much does the whole package for a donor transplant cost - surely £8,000 beforehand makes it better value for money. :D