second stem cell transplant

This topic contains 8 replies, has 5 voices, and was last updated by  Mikejanulewicz 4 years, 7 months ago.

Viewing 9 posts - 1 through 9 (of 9 total)
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  • #133884

    vivbev
    Participant

    Hello all,

    I’m looking for advice re a second stem cell transplant. I had my first in jan 2016 and had the best possible response to the treatment according to the consultant. However, 13 months later I relapsed. My paraprotein level was undetectable in dec 2016 and was at 35 in feb 2017 so it’s back with a vengeance. I am currently on my 5th cycle of CTD and responding very well to treatment (down to 5 after 3 cycles). Initially I was told a second transplant would not be offered but at my last clinic appointment it was put forward as an option with a suggested date of august. I feel very unsure what to do as it is a harsh treatment for a probable very short remission. Has anyone else been in this position and, if so, what did you decide to do? Any thoughts and advice would be very much appreciated

    #133885

    taffd
    Participant

    Can’t offer any advice, can only say that after 4 cycles of CTD I said that I didn’t fancy a sct, as I didn’t think I’d be able to handle it. It was never mentioned again.

    I also wondered if it was worth it, requiring maybe up to a year to recover to get a year’s extension of life expectancy.

    Best Regards, whatever you decide.

    #133886

    cleonicemuller
    Participant

    So what to do just give up? Even though one is been offered an option…

    Just had dad dying due to cancer no treatment left. ..not nice specially when he just wanted a chance. ..good luck. ..nobody can make the decision for you ..choice is yours. ..as they say

    Each treatment gives different results

    #133887

    taffd
    Participant

    Did you have CTD as your initial treatment before your first sct?

    • This reply was modified 4 years, 7 months ago by  taffd.
    #133889

    kevin
    Participant

    Hello

    I was first diagnosed in 2006. I have had 2 courses of CTD and 2 sct. On both occasions I was asked if I wanted to have the SCT and each time asked the advice of my consultant who each time thought it was the way to go. All I can say is that both courses of treatment and the sct gave me about 4 1/2 years of full remission. Regarding the treatments although they were both identical they were both different in there side effects. Six months ago I started to relapse again and am just waiting for my count to reach a level my consultant decides we need to start treatment. He has suggested that this time it will be revlamid.

    Best wishes
    Kevin

    #133890

    vivbev
    Participant

    No, I had CVD and it was very successful. My paraproteins dropped from 88 to non detectable in 4 cycles

    #133892

    taffd
    Participant

    Morning vivbev,

    You might find that CTD gives you a good response again and maybe an even longer remission. It seems myeloma is so individual that there’s just no telling.

    Looks like it’s the same decision as the first time and there’s no way of saying whether sct would be of benefit at all, or if it would give you a similar remission or a longer one.

    As I said, I made the decision that I wasn’t having one and that hasn’t changed.

    Regards

    #133895

    Mikejanulewicz
    Participant

    Hi vivbed

    A truly individual and difficult decision.

    The scientists put forward that the statistics show increased remission free interval, but I think very few scientists have had sct!

    I was diagnosed 2013, had sct the same year, a tough tough time. Complete remission. Post sct took me a year to get back to my normal self.
    Relapsed 2016, offered sct. I made the decision very early that ( for me) the recovery ate too much into my enjoymat of life, so opted not to have sct. Attained partial remission last August, unfortunately now relapsed again.

    Maybe I made the wrong choice but I’m happy with the decision I made and also happy that my wife and children (20’s) didn’t have to go through the roller coaster. My family fully understand and supported my decision.

    Very very

    #133896

    Mikejanulewicz
    Participant

    Sorry

    Verry very good luck with the difficult decision.

    Mike

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