[GinaHParticipant]

My Mam was diagnosed 8 years ago at 47. She had a SCT and was in remission for 4 years. After relapsing, she seems to have had every treatment going with limited success but awful side effects. Recently she has been on high dose steroids and they managed to hold the myeloma back, so to speak, for a year. Unfortunately it has started to increase so her consultant has started her on Melphalan. After the first dose, her blood counts were all very low but thankfully it reduced light chain too. After several blood transfusions etc she is due to start a second round on Monday. I am struggling to find up to date info on this treatment. Can anyone let me know their experience/knowledge of this drug? And is anyone else on it? I'm getting the impression it is quite old? I've also been hearing about a new drug called Pomalidomide? Is this available yet?

Thanks x

[FOXLEYParticipant]

Hi Gina,
Sorry to hear your news. I got the impression too that Melphalan is quite an old drug. I think that most people in the UK who are having high dose chemo followed by stem cell transplant are given Melphalan as a once off knock out blow. I had it in December and it was not pleasant at all.
Sorry that I cannot be more helpful.
Chris

[GinaHParticipant]

Hi Foxley,
Thanks for your reply. It's reassuring to hear others have had this treatment because as far as I can tell it doesn't appear to be widely used anymore. I hope the results were also positive for you. I just find it worrying that it seems such a potent, and harmful, drug and that it is being used after so many years of damaging treatment. I guess I was just wondering why. Does it mean they are running out of options??? Did you take it before a SCT? My Mam does have stem cells left in storage but docs don't see her as suitable for a second transplant.
Thanks again for replying x

[tishwishParticipant]

Hi
My husband Peter had Melphalan pre stem cell transplant. It was a very high dose and he had severe side effects with it. He has now relapsed after 13months and he is having a bone marrow biiopsy on Thursday. Consultant has said that he will be treated with Velcade and steriods. Good luck

Love Trish xx

[GinaHParticipant]

Hi Trish
Thanks for your reply. I'm sorry to hear about your husband's relapse and I wish him luck for biopsy. Most of what I have read mentions Melphalan before SCT. I guess as a smaller dose it can be used as a treatment?

Thanks x

[eveParticipant]

Hi Gina

The choice of drugs after relapse can vary on the trials after CTD comes Velcade has your mum had it,you might be able to ask if this is available for your mum,it is having good results,but only seems available on trials.

Melphalan is given to kill the cells,people have it as part of SCT,, Chris are you on any other treatment now?.??

I would advice you to speak to consultant,your mum must be hitting early fifty,s and if she has SC left and is fit enough,why not another SCT,there are a few people on here who have gone down that root. Ev

[GinaHParticipant]

Thanks so much for taking the time to reply.
Following four wonderful years in remission after her first SCT my Mam has had Thalidomide, velcade, revlamid and dex, but unfortunately nothing seemed to touch the myeloma. Her consultant says until they can get her light chain count down and stabilised a second SCT is not an option which is frustrating and she is so strong and amazingly brave.
Thanks again xx

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