[marleneParticipant]

hi all,

can any give me any advice or opinions relating to myloma x relapse treatment, the hospital is currently offering us a trial treatment consisting of a 4 stage process, this would be the following.

stage 1 PAD chemo 2-4 cyles

stage 2 stem cell mobilisation and collection, (this has already been harvested)

stage 3 the next stage is chosen at random either high dose chemo and stem cell transplant, or cyclophosphamide chemotherapy 12 cycles (weekly)

stage 4 follow up

my main issue is the fact that my husband had problems with earlier treatments regarding his immune system and this is a concern to us.

many thanks in advance for any replies 🙂

Marlene

[eveParticipant]

Hi Marlene

This is just to say hello and welcome.

I cannot help with your questions,but I am sure someone will come on and give you some answers,may I ask how long was your husbands remission and what arm of the trials he was on.?????est of Luck Eve

[marleneParticipant]

hi eve,
my husbands remission was 20 month, he received chemo followed by SCT, the only problem was that following this he suffered from shingles and pneumonia, hes only just got back on his feet after this so we,re a bit knocked back by it tbh, many thanks for the warm welcome 🙂
marlene

[KeithH17Participant]

Hello Marlene,
I have relapsed twice and had 2 transplants which is the limit for me. I am now on Dex/Revlimid for as long as it works. Revlimid like most MM drugs knocks the Neuts for six which makes you very open to infection. I've had that many I can't remember which ones I've had and when I got them. If I were you I'd go for the trial and take extra care when mixing with people and avoid confined places and people infected with colds I know easier said than done.
My immune system is shot to pieces and I've been neutropenic on and off for the last 4 months. I try to do all the right things but the WBC count has been flat more or less throughout the treatment.
I hope things turn out good for you and your decision is the right one.

Take care.

Keith.

[marleneParticipant]

hello keith thanks for reply got to come to some decision by wed the consultant wont say either way want to do marlene

[NettieParticipant]

Hello Marlene
I went on the Myeloma X Trial in 2009 when I relapsed the first time following my first SCT in 2005. I tolerated the PAD chemo very well and as I already had enough stem cells frozen from the first SCT did not need to have them harvested again which can sometimes be a problem if you have already had one SCT.
Although I was told the selection of treatment for the Trial was random I did make it known that my preference was for a second SCT rather than the Cyclophosphamide (mainly because I had four years in remission after the first) and fortunately that is what was selected for me.
My first SCT was horrendous but I sailed through the second one and remained in remission until August this year. The Trials Nurse was wonderful throughout the whole process, and is still following up on my progress.
This is just my experience and because of it I would always recommend going on the Trial. You can pull out of it at any time and this will not affect the treatment you receive in the future.
Good luck with whatever you decide, keep us posted!
Nettie

[marleneParticipant]

hi nettie thanks so much for your reply barrie has decided not to go on the trial his sct only lasted 20 months in which he had a bad case of shingles and puemonia so hes now on velcade injections and steriods we hope this works happy days

[KeithH17Participant]

Hello Marlene,
Shingles and Pneumonia are certainly not recommended but believe it or not 20 months isn't bad and beats my 7 by some way. SCT'S are a bit of a lottery with some patients getting up to 7 years then there's me with 7 months.
I had Velcade for my second treatment and it worked very well. I had all 8 cycles before going onto a second sct but I've not heard of anyone having more than 8 cycles but then maybe that's now changed?
Anyway I do hope that Velcade works well for Barrie with a long remission.

Take care .

Keith.

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