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Hello, i’m hoping you can all help us in the decision of Stem Cell Transplant…. My husband was diagnosed in March this year with Multiple Myeloma & has been having different treatments throughout, the treatments themselves are bringing his levels down to where they should be which is good however the side effects for him have been awful, so much so that he only feels himself for about 3 days a month, his initial treatment left him with peripheral neuropathy to the point where he need to use a walking stick to get about which forced a change in treatments, he’s now left feeling fatigued & bloated & still has some of the neropathy symptoms . so basically he’s not had a good time of it! the hospital are now talking to us about stem cell transplants & after reading through the info they gave us & telling us he would probably need to go through this twice & it may only put it in a deeper remission for a year or 2 we are trying to weigh up the pros & cons of weather to put him through another 6 months of not feeling well or not & would really appreciate any advise from anyone who’s either been through it or decided not to have it…thanking you in advance
Hello
My mum has been in the exact same situation. She’s 65 so we worried around age and risks. She’s scheduled to go in soon.
Its such a hard decision but for us but extra any time would be worth it. I’m not sure the numbers could be held properly without it. How old is your husband? The younger the longer he should hopefully stay in remission it appears.
It’s just such a hard decision and I think we are all petrified but to us, I think ultimately it’s the best decision to do it. I really hope so anyway
My husband is 54, obviously I want him to be here for as long as possible but after seeing him so poorly & struggling since March it’s hard to agree to something that’s going to put him through that again & I’m not sure how he’d cope with it himself, physicallyor mentally….as you say such a hard decision…such a rollercoaster since first diagnosis with so much to take in in a short space of time…thankyou for answering
Hello Kazt
I was diagnosed in 2006 aged 48. I had my first SCT in 2007 and my second in 2013. I relapsed again in 2017 and finished my last treatment in Nov 2019. My two SCT’s gave me about 4 1/2 years full remission each. My last treatment also gave me full remission which is were I am today. I have always based my decisions on treatment with my discussions and advice from my consultant with whom I have the utmost faith and trust. He has got me to 2020 and in full remission. Ultimately though the decision has to be a personal one.
Best wishes
Kevin
I’m 70 year old female I was diagnosed with Multiple Myeloma in March 2019. I started with VTD which I had for 4 months then stopped because of peripheral neuropathy. I had stem cell transplant in October last year. I must say that I sailed through it no sickness or mouth problems. I do not understand why your husbands doctors are saying that he will need 2 transplants. They do collect enough stem cells to do 2 transplants or if the one fails then a second one can be tried. I am now fit and well. I have Zoe take once a mount and regularly blood tests. Hope this helps.
Hello Katz, as the other have said it is such a hard decision and one that I think age does have a big part to play in. I’ve had one sct and then had DVD now I had to make the decision which I wanted and I looked to this forum for advice too as they are all so helpful. All I can say is as tough as I know the 2nd sct will be and the recovery period long I know that if I get through that at my age 55 It should be worthwhile. Maybe that may help you decide. All the best with your decision.
Just to add I believe sct will give your husband a more normal life and no side effects it just puts his body through intense stress which your consultant would explain fully and wouldn’t recommend if he didn’t think your husband could take.
Best wishes
Darren
If your husband is young-for-myeloma, and has high risk features in his myeloma diagnosis, he may be being offered tandem stem cell transplants. Ie two within months of each other. This has been found to keep myeloma at bay for the longest time for this group of patients. You cannot really compare how you feel during induction therapy (what you husband is going through now) with how you feel during SCT. As patients and loved ones we are told everything that can go wrong during SCT, and it would be unethical not to, but in reality few people get lots of complications, few people get no complications and most of us get a few. Whilst in hospital I only felt poorly for 3 days, and felt fine by day 37. I wasn’t in remission before SCT, but was by day 60, and am still there now. My neutrophils and white blood cell counts have been low since SCT so some collateral damage, but do I say it was worth it? Definitely. Would I have done tandem transplants if they’d been advised? Yes I would.
I now have complete faith in my consultant, so if he advised a course of action I’d be likely to agree, but it does take time to develop that degree of trust.
I’m a 71 year old female who was fit and active prior to diagnosis and chemotherapy. I was considered suitable for a transplant and referred to St James Hospital, Leeds. I have had excellent treatment at my local hospital and my consultant told me yesterday that I have had an ‘excellent response’ to the chemotherapy cycles so have just started my last one (7). I have been referred for harvesting of my stem cells but am concerned that because Leeds suspended treatment during the first and current lockdown, my harvesting might be delayed. Does anyone out there know how long harvesting can be delayed after the end of the last cycle? I am really anxious to get on with it now that I know I have met the criteria. Is anyone else having this problem?
Hi ukej, there is always a bit of time between the end of induction treatment and stem cell harvest to allow the bone marrow to recover. As I had not had a complete response I had an infusion of cyclophosphamide 10 days after my final induction cycle. I then took drugs to increase stem cell production and had them harvested 9 days later. I had the SCT 27 days after harvesting.
Leeds will have a transplant nurse, it may be worth you speaking to her (him) to check what the current arrangements are during Covid restrictions, but I am sure that they will have procedures in place. I hope the processes turn out to be as straightforward for you as they were for me.
Thank you Mulberry, that’s very helpful. I’ve spoken to my consultant today and, unfortunately, he informed me that because of Covid there is a long waiting list for harvesting and transplants as these have been suspended and there is no timescale for their resumption. He told me that once my current cycle of chemotherapy has finished I will then be monitored every 6 weeks to keep an ‘eye on’ paraprotein levels. If they start to go up I’ll be given another course of chemotherapy. There are several of us in this position at my local hospital so it is likely I’ll be waiting a very long time as the capacity at St James’s, Leeds for SCT’s is limited. It seems that the NHS is not really working for people in our situation.
Hi ukej. I found this stage of treatment stressful without the repercussions of the pandemic. Research has shown that timing of SCT doesn’t seem to have a long term effect, least ways after stem cells have been harvested. I suspect research hasn’t been done on delaying harvesting as is happening to you, but you are in the same position as people who decide not to go ahead with SCT, and this is a tried and tested route. Some centres in USA are rarely recommending SCT now. In the long term those patients do have access to new drugs that we don’t on NHS, but the pandemic will end in a much shorter timescale & you will get the chance to safely have SCT. I’m sure it’s worrying and frustrating at the moment though.
Hi Katz
I think it’s a very personal choice whether to have a stem cell transplant or not. Like your husband it was also recommended to me that I have a tandem transplant. This was two years ago and I decided not to go down the transplant route. After the initial vtd therapy I continue to remain well and am not on treatment although my paraprotein did rise quickly. I have been taking a high dose of curcumin daily and this has helped me to remain stable. Best of luck with what is a very difficult decision.
I had my stem cells harvested, although only enough for one transplant as the pre harvesting procedure has been changed to only 5 days of growth hormones.
I am now waiting for a transplant date.
However, since before my last cycle of conditioning chemotherapy ,which finished over two months ago, my paraprotein levels have been so low that they are not measurable. I assume this means I am in remission although no one has said this to me.
My dilemma is a) do I go ahead with the transplant or delay until my paraprotein levels begin to rise?
and b) should I be concerned that they have only harvested enough cells for one transplant?
I am due to speak to my consultant next week and would welcome any suggestions/questions I should ask him.
ukeJ
Firstly congratulations on reaching the point of unmeasurable disease, that’s good news, a major hurdle over. It does make the question of SCT and the timing of it less clear, however protocol in UK is for everyone who is fit enough to have SCT. In USA there has been a move away from ‘one size fits all’ myeloma treatment and it seems that some centres very rarely recommend SCT at all, but offer patients new generation drugs which are not available to us on NHS (On average NHS/NICE do not approve cancer drugs until 12 years after FDA safety approval). USA patients harvest stem cells immediately after induction therapy (immunotherapy myeloma drugs damage stem cell production) but don’t necessarily use them, and certainly not more or less straight away as we have done in Uk.
Some patients can remain with inactive disease for years, others for no time at all. Several USA patients that I “know” have had fairly short periods of inactive disease without SCT, 6-9 months. Currently there is no way to determine which way an individual patient will respond. There can be collateral damage to the bone marrow from SCT, but it does give an average of 30 months of inactive disease without maintenance. Given that lenalidomide maintenance is now available to patients in Scotland and England, average periods of inactive disease will be at least 60 months after SCT. A few myeloma patients have always survived for decades, with or without SCT but these are a tiny minority, an unreal expectation.
I still had a small m spike before SCT so there was no real decision for me to make, and the process got me into a state of inactive disease. I did sustain some damage to bone marrow which has left me unable to tolerate normal dosage of lenalidomide. I had been on a 25mg dose during induction without a problem but after SCT could not tolerate 10mg as maintenance(because it made me neutropenic) so I just have a 5mg dose. I don’t know whether this will have consequences for future drug therapies, but I’m hoping that the SCT will give me a long period of inactive disease. I found the SCT itself much easier than I feared and I felt well by day 60 and went on a physically active holiday on day 102. I’ve had 2 years of good quality health since then and have no regrets about having an SCT, although as I said wasn’t in remission before I went down that route.
I hope you are able to have a full and frank discussion with the consultant at the transplant unit where you would have the procedure done, and I hope your decision turns out to be an easy one.
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