Maintenance after Autologous Stem Cell Transplant

Hi Fogmister,

Great to hear from you and I’m really pleased to read you have had some positive results, those results are fantastic!

You raise an interesting topic, to which I suspect there is right or wrong answer. I am not having maintenance treatment myself after two SCTs (auto and Allo), and I know what you mean about desiring a gap in treatment. I had 18 months of quite intensive treatment and at the end, I had had enough of it. I have read however that maintenance therapy is often at lower doses, so I wonder if the side effects may be less? Also, I have read that maintenance treatment might result in better long term outcomes, so I understand why it is being suggested.

I think it ultimately comes down to personal choice and what feels like the right approach for you. 

And in a way, I know what the nurse is saying, even if they might have said it badly. I think she is saying to take things a day at a time. You have not had the SCT yet, and that is a tough process of itself to get through. You might have a clearer mindset once you have done that.

Hopefully others will be along soon to add their perspective.

All the best,

Greg

What a great result from just two cycles, i'm very pleased for you. Its an interesting point that you raise and I think Greg is absolutely right in suggesting you wait to see how you feel after the SCT.

I'm on maintenance chemo now which is low dose but I haven't yet qualified for SCT. However, after 4 cycles with positive results I am finding side effects a little too much, but worse now  on 4th one. I shall see my oncologist next week and request a month off to recover.

She won't be happy about it but like you I feel I need some time to recover from the onslaught! As I say, a very personal decision.

Best of luck going forward.

J

Thank you Greg - and more generally thank you for your very active role in this group.

You are always there for people with your kind, wise and well informed words.  it is wonderful to have someone like you here providing a veritable backbone to the group, and I expect I am not alone in being very grateful to you.  

Rupert

Thank you J. I wish you all the best of luck with the pause in the induction and hope that the results continue to improve for you to get you ready for STC.

i have heard that for some the STC is the golden trophy at the end of the painful road of the induction therapy chemo, but for me it’s just not feeling like that. My induction has just gone so well - very limited side effects - tiredness and very slight tingling - and extremely effective - so the STC seems to me to be a huge amount of pain for limited gain on top of the induction. Continuing maintenance after that just seems to be piling drugs on after yet more drugs and I really need to weigh up the risks vs benefits. I will of course be discussing all of this in detail with my haematologist after my bone marrow biopsy and PET scan which are lined up for next week.

All the best 

R

I am also on VRD induction therapy, with the plan being an autologous stem cell transplant once my pps have reduced sufficiently. I am on cycle 4 but the consultant thinks I'll need 6 with reduction at current rate (despite potential harvesting problems I may get having more than 4 cycles of revlimid.)

For me the decision about the value of SCT is all about the results of trials, especially Myeloma XI.  I would recommend anyone getting hold of the results of the maintenance arm of the trial before making a personal decision.  Consultants should give you the info if you specifically ask. 

Best wishes

Jane

Hi everyone,

another interesting strip and very relevant for me - so thanks.  I've just completed stem cell harvest (11.1 million in total) prior to going back into the hospital early next month for Malfalan and a good portion of those stem calls back again.  My consultant wants me to follow this with an Allo although to be honest the more I read the less convinced I am that its the right thing to do at the moment.   

I'm increasingly of the mind that auto followed by maintenance is the right thing at the moment with the option of a further auto or even allo thereafter.  The Myeloma XI trial indicates that auto followed by lenalidomide maintenance provides much improved remission.  But then we come to the side effects and the subject of this string.  Does anybody have any experience of lenalidomide side effects?

Wishing you all well

Shaun    

Hi there

I had revlemid as my second treatment But only for a week as i had quite a bad skin reaction , a rash over my scalp , back , arms , torso upper thighs.

It was very itchy and hit with it to.

I don't know whether this is to common but i had to have course of steroids to clear and was changed to pomalidomide .

These have all been part of the initial treatment for me 

Ive not reached my transplant yet 

As i type this in ending my second cycle of DT-PACE high doseage treatment in uclh macmillan in London

With veiws to a harvest on the 3rd dec

With that in mind doseage of leniomides may be lower when used in maintainence rather than treatment

Good luck which ever way you go 

Fingers crossed for you 

Hi Vinny,

thanks for the information about side effects.  I suppose its easy to forget that whilst the chemo is an essential part of our treatment its also extremely toxic.  Good luck with the harvest.  For what its worth, it was a really straightforward process and paracetamol was sufficient to deal with any discomfort.

Good luck!

Shaun   

Thank you all for your thoughts. I’m now pretty much convinced that the SCT followed by maintenance is the right way to go. 

I have had a massive rash during my induction, but it turned out to be the septrin (co-trimoxazol) rather than the lenalidomide.  it did progress to emergent Stevens Johnson syndrome so I had to have a week of steroids and the associated irritability, but it brought it back from the brink of potentially being quite nasty.

My test results from last week have come back and after 3 cycles my serum free light chain ratio is 1:1, my paraprotein is 2, and the biopsy shows no detectable tumour cells. I feel like shouting from the rooftops!  Definitely only 4 cycles of RVD required. I’m booked in for stem cell harvest on 9 January so I’ll have a chemo free Christmas! 

All the best of luck to everyone. 

R

thanks for that shaun 

all harvested up now , had 2 days to get a total of 5.2 million . they'd wanted 4 mill , but only got 3.2 first day . hence 2nd day . 

its looking like i m going for a tandem transplant , where ill have a second one in march / april . so ill get half cells back on first transplant and keep other half for the 2nd .

so after scans and biopsies etc im going into UCLH macmillan centre next wednesday  the 19th for 4 weeks , and my present is coming in a plastic bag and is a red liquid !!

good luck everyone !! enjoy christmas and lets all hope for a year where we reach remission . if we haven't already .