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Hello All, I’m new to this forum and hope you can help me come to a decision on whether to go ahead with SCT.
I am 61 and was diagnosed in July last year when I started 4 rounds of VTD. The first three were fine but with the fourth came, very bad styes on both eyes, followed by increasingly bad peripheral neuropathy. At the end of cycle 4, I opted to stop treatment for a while, especially as my paraprotein results were ”sample too small to detect”.
I had an appointment at King’s College Hospital London to discuss the SCT process and found the detail around the side affects so terrifying (as did my family) that I would prefer not to do this, for as long as my paraprotein levels remain too small to detect.
Has anyone else been in a similar position and if so, what did you do?
Is the SCT worth the risk of damage to other organs and hair loss?
The hair loss may seem trivial, but I’m of Afro-Caribbean descent with dread locks and my hair will not grow back quickly.
Any help and guidance will be gratefully received.
Thank you.
I can only tell you of my Sheila’s experience…she has waist length red hair, she elected not to have a SCT. Sheila was told this was the best option but not the only option. Her hair is her identity and she could never consider loosing it.
Like you she had a very good response to VTD and got to zero and twice tested MRD- and had thalidomide maintenance for a couple of years. After a few more years she had daratumumab which was very tiring…being only 45kg in weight the doses hit her hard. Now ixazomib and lenalidomide and once again down to zero. Eight years now since diagnosis and she still runs up 500 foot steep hills.
Treatments are improving all the time and the future is so much more hopeful.
Bear, thank you this helpful response.
Hi there
I had my SCT last summer, and it was a very scary thing to go through, but I had an excellent consultant in Birmingham, and he explained how the chances of something going horribly wrong were very, very low. He was very honest about a couple of cases where things hadn’t worked out well, but it was literally two cases in his entire experience.
I have very low kidney function, thanks to the myeloma, so the prospect of ending up on dialysis was very worrying, but I’ve managed to avoid it so far.
I was upset to lose my hair, which was the longest it had ever been due to 18 months of lockdown (way down below my shoulders), but it’s growing back well and I’ve had so many compliments about how short hair suits me, that I’m tempted to keep it short for for a while! It’s really surprised me how different I look, but in a good way.
You have to weigh up the pros and cons. I didn’t enjoy being stuck in hospital for three weeks without any visitors because of covid, and I don’t like the idea of going through it again, should the need arise, but at the end of the day if it gives me more time with my three year old, I would have no choice.
I hope you are able to make a well-informed decision.
Take care.
PS. My sister has also been through a SCT, almost 9 years ago, and ironically I was her donor…
Dear Shropshiremum,
Thank you so much for your helpful response.
I was 60 when diagnosed and only had a VGPR (very good partial response) to induction treatment so I was keen to have SCT. I anticipated it being a much more traumatic experience than it was. Like so many aspects of myeloma, there seems to be an extreme range of experience. Someone in my local support group literally had no side effects, whereas another person nearly died (but is still alive 9 years later).
I had my SCT 3 years ago and definitely don’t regret it as my myeloma has remained inactive since, but I did loose my hair (& incidentally found that a short hair style suits me).
I would keep options open by having stem cells harvested and stored even if disinclined to go ahead with SCT at the moment. (Some patients have been told that they cannot harvest unless they are planning to go ahead)
In USA many patients don’t have SCT after induction treatment, but they have access to the newest therapies that are not available on NHS (yet), so their experience is not directly comparable.
Hi there
Youve been given a variety of advice which reflects (as mulberry said) the extreme range of experience ,which in itself illustrates that myeloma is a very heterogenous disease ie every case is different . However in the present situation particularly in the uk ,generalisations are the norm . You ve already experienced this having had vtd and had neuropathy a much more significant and well known side effect than temporary loss of hair .
iF you have asct, which is consolidation treatment to hopefully remove as many remainng myeloma cells as possible; you would be eligible for lenalidamide maintenance afterwards which was proved to be of benefit in uk trial myeloma X! = longer disease free survival . a major step forward in the treament of myeloma in the uk ( Albeit 5 years +after the usa /and europe )
As always in myeloma its risks v benefits . however thats what s the forum should be all about in talking to people who had the same decisions to make .
best wishes Michael
Hi docmick,
Thank you so much for this helpful response.
Hi Mulberry,
Thank you so much for your helpful response.
Hi Docmike,
Thank you so much for your helpful response.
My dad had to make the same decision and elected to have the SCT at age 63. It wasn’t the most pleasant experience but he coped well and although he did lose his hair, on the plus side when it grew back he had no more grey hairs!! He didn’t suffer any organ damage and it was very successful. He then had 7 years of remission so feels it was the right decision to make for him. However, he is now in a situation where he has to potentially make the same decision again and his initial thoughts are not to as it was a long recovery process, but he hasn’t ruled it out, so let’s see! Good luck in your treatments.
Thank you kh0305 for this helpful response.
Dear all,
After receiving your helpful responses, speaking to the Myeloma Info helpline, discussing further with my family, having further discussions with my Clinical Nurse Specialist and my Doctors, I am now looking at the option of harvesting my stem cells and storing them. I am in remission at the moment and whilst I accept that I am deemed ‘fit’ and the the guidance is to move straight to the SCT, I am really reluctant to do so given the possible side effects that come with the SCT. As mentioned in my initial post, I am still suffering from peripheral neuropathy after just 4 cycles of VTD, which shows no signs of abating and is extremely uncomfortable. If I already got this side effect, I dread to think what the side effects of the SCT will be and the impact that could have on my life/family.
I’ll take my chances and put the SCT on hold for now.
Thanks again for all your helpful responses.
Dear Chickenwing. I am one of the peer support group. I can only tell you of my experience. I was admitted to hospital after collapsing with unbelieveable back pain which turned out to be 2 vertebral wedge fractures. When they carried out investigations they found I was in complete kidney failure requiring immediate and constant dialysis. Furstth investigations identified that I had MM. It sounds like you have not had as bad an experience which i am glad about. I was initially told I had just days to live due to the state of my blood. However I was given a transfusion of 13 pints of blood which very much improved my condition. I obviously got over that initial problem and they extended the prognosis to 6 months. I had 6 rounds VTD which were very effective and the prognosis was again extended to 2 years. I elected to have SCT which I had 2 years ago last month. I am tested every 3 months and there is no sign of the MM coming back.
I can only tell you of my experience, and for me it was a no brainer to go ahead with the SCT as I was so ill and I was not ready to go, so was willing to do anything to make my life last longer. SCT treatment is not pleasant and you will probably lose your hair and get mucositis which is also not pleasant, but both of these side effects are only temporary, your hair will grow back!
Would I have it again knowing what I know now, yes I would as I would probably not be here now, or at least I would be very ill if I hadn`t. Would I have it again if it came back? Yes I would if it gave me further life expectancy.
However the choice is yours and I wish you well whatever you decide.
Dear Tony642, thank you for your helpful response.
I had a call today about harvesting my stem cells which I am definitely going to do in April. However in prep for the harvesting, I will have a further opportunity to discuss the SCT again and I’ll see if I change my mind about the next step. I is so hard to go for a treatment when I am currently in remission and well, knowing that the treatment could/might have such adverse side effects. I note and appreciate all of these responses and will keep you all posted on what I will do beyond the harvesting in April. In the mean time, keep well everyone.
Dear Chickenwing,
I am really pleased that you have at least decided to go for the harvesting. Have you been told how it works? If not, let me know and I will tell you what procedure I went through.
You do right to take things one step at a time. The good thing about harvesting is that they keep your stem cells in liquid nitrogen and they last for years, so if you decide to not have it after you have had the harvest, and then change your mind at a later date, they will still have them and they will be viable. However, I would really think about that carefully as the older you get, then that might cause a reduction in the effectiveness of the treatment. Also once you get to a certain age, that might have a bearing on whether they will still offer you the tratment. I was told that I was in the right age bracket for STC, which seems to suggest that had I been outside that bracket, they might not have offered it to me, but I would check that with your specialist nurse.
Please remember that the side effects whilst unpleasant are temporary. Following STC my cancer has been inactive for over 2 years, and for me, going through the unpleasantness was worth it in the long run, but obviously the choice has to be yours.
Stay safe and well and please let me know how you get on. If there is anything else I can help with, please let me know
Regards, Tony
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