Any body on hear post Stem cell transplant with myeloma?
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Hello @JE1963,
I have had two Stem Cell transplants during my 10+ years with Myeloma. The second one was in 2020. Are you looking for someone who has had their transplant really recently? There’s another thread on this forum called ‘Awaiting, having or had a stem cell transplant’ where lots of people have shared their experiences although not all of them have Myeloma. Is there anything you would particularly like to know?
In my experience, the more recent transplant went better than the one in 2013. I think maybe some little things have been refined over time even though I think the basic treatment is the same. I am definitely very glad to have had both of mine (which is of course easier to say in retrospect).
I hope that whether you’re thinking about a transplant or you’ve just had one that you are doing ok.
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Hi
I’m 22 weeks post second transplant for relapsed myeloma and having maintenance treatment monthly
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Hi Coastgirl,it’s been 5 weeks since i had my auto Stem cell transplant.Every thing went well apart from the throat,stomach issues.
My consultant surprised me 2 weeks ago when he told me im to have 2 more cycles of Dara,dex and thalidomide as part of maintenance therapy.Its not that im doubting him but i really thought i was finished with chemo for the time being so just want to lnow if anyone else has had this too.
Thanks John
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Hi @JE1963 that must have been a shock to be told that you have 2 more cycles of maintenance therapy, what a ‘nuisance’
Look after yourself and take it steady.
I’m on maintenance dara with Dex no velcade
This is to help my transplant last longer and deepen the response to the transplant
For example
My first STC protein 4/5 and lights chains 77 at day 100
My second STC Protein less than 2 light chains less than 1.2
I have had a much better deeper response with dara
Dara wasn’t available in 2017
I believe it’s used now for newly diagnosed myeloma and relapsed
I knew I would be on maintenance treatment after transplant as it was discussed before hand
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Thanks for that 2db.I knew id be on a maintenance but wasn’t told it would be dara and dex.I see my consultant on Thursday to discuss it further .I guees im worried whether im strong enough for it so soon after the Stem cell transplant.
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I had my first dara 7 weeks after transplant
I spent the first 3 weeks of Stem cell transplant sleeping as I suffer with hyperemisis I couldn’t eat or drink had an infection, came home ended back in hospital with sickness went from 101kg to 88kg in the first 5 weeks felt quite weak
My bloods were good for me at week 7 and fine to have dara
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I spent 2 and a haf weeks in hospital and lost a stone in weight myself. Now that my taste buds have returned im slowly regaining it.My biggest issue is fatigue and aching muscles and joints especially legs.Did you suffer with this and for how long?
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Hello @JE1963,
That’s great to hear that you are the other side of your transplant and that it went well.
For some reason my consultant has never offered me maintenance therapy but so many people seem to have it these days and it sounds like a very good thing - as @2DB says, to deepen the response. I had Dara before the transplant and it seems to be an amazing drug, especially if you can now get it via sub-cut injection instead of spending a long time on a drip? I had the drip version and it was indeed a very large bag to go through, but definitely worth it.
I hope you will be strong enough to continue on with your treatment and soon be feeling a whole lot better. I found my recovery was quite gradual, although it was also during the height of the pandemic so it was hard to gauge while shielding. Two years on I feel pretty good and very grateful to be in remission.
We’ve just been out for a walk on a nature reserve and it was really beautiful and peaceful. It’s ironic that walking is said to help with fatigue but it really does seem to make a difference.
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Hi coaatgirl,
Great to hear your doing so well and 2 years on👍
Yes ive got my head aroind the dara thing now as a positive, my problem is im an overthinker and was imagining allsorts of things. John
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Fatigue is a big part of recovering from the Stem cell transplant our bodies have been through a traumatic time and then rebuilding itself no wonder we have fatigue
It may well stay with you and some days will feel better than other and then you have to be kind to yourself so if you need to rest then that’s ok.
I was wobbly on my feet for a while after transplant and my legs did ache, the muscles seem to waste quickly when you lay up in bed
It was hard work getting up the stairs, showering and getting dressed
Around 12 weeks post I started to feel stronger and eating better
I do keep fit for living with cancer via zoom and that has helped to regain my strength
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You will feel better it just takes time
Keep pushing forward even if it’s baby steps
When you look back each week or so you will noticed you have achieved more each time
Dara maintenance is a positive anything that can help a deeper response is a good thing
You got this John your stronger than you think
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I’m having dara via sub cut takes around 10-15 mins as it’s a very large syringe of liquid and has to be slowly injected
I have had minimal side effects to dara
Velcade is the culprit for me
A bit of nausea with this regime and thankfully no sickness
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Hi,ive seen my consultant today and hes confirmed what you said about a deeper response. Im to have DVD and thalidomide for 2 cycles and then lenlomide for maintenance for aslong as my body can take it.Im 59,may i ask how old you are 2db as i wonder if the different treatments vary with age?
Thanks John
Ps also zometa to start again
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Hi John I’m 54
That’s great that your consultant has confirmed a deeper response and that should give your more confidence 
going forward
I have dara and Zometa tomorrow
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