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Hello,
I’m 5 weeks into 16 of my chemotherapy and feel that I’m being cajoled into doing stem cell replacement, no other treatment has been offered or discussed? Yes it’s the ‘gold standard’ as I keep being told but…
Having read and listened to a large number of success, failure and every thing in between journeys I’m really not sure I want to go the SCR route. There doesn’t seem to be enough information about none SCR treatment for people who don’t want the procedure, unless that’s down to me and how I’ve been investing.
Obviously there are no guarantees and excluding the extremes, many people seem to take a large amount of time e.g. 10-12 months, with many ups and downs to reach a level where they feel they can live relatively comfortably mentally and physically, of course many don’t reach a comfortable level at all after the SCR.
I’m wondering if I don’t do SCR could I potentially continue living approximately as I am?
I’m 66, relatively fit (which is why I’m being offered SCR evidently) I have a phobia of needles (a historical issue)that causes anxiety, which isn’t good at the moment and the SCR procedure fills me with dread to be perfectly honest. As well as the recovery that sounds like it could be very difficult with many obstacles to overcome hopefully.
I’m looking for quality of life not longevity and would be interested in people’s thoughts and experiences of not proceeding with the SCR?
I appreciate all of this needs to be discussed with my consultant, although the two I’ve seen so far have only mentioned/offered SCR?
Many thanks in advance and good luck to you all.
Peter.
Hi psg32 and welcome to the forum.
I went through treatment in the first half of 2023. However, I didn’t have a stem cell transplant.
The short reason why was that, although young enough and superficially fit enough to have one, I have a dodgy heart and a transplant would have put an extra strain on my heart.
However, I did my reading up and discussed it with the consultant. I could have pushed for a transplant but didn’t. Stem cell transplants were originally done when other treatments were relatively ineffective: we are now in an era where patients and doctors are almost spoilt for choice: bispecific antibodies (such as elranatamab, teclistamab and talquetamab), belantamab, celmods, CAR-T (though the last two are not approved yet in the UK)…
The DETERMINATION clinical trial showed that the advantage of a transplant is not so much.
[Now quoting Chat-GPT]
‘There is evidence that some U.S. myeloma patients are delaying or avoiding upfront autologous stem cell transplant (ASCT) more often than in the past, though transplant is still considered a standard option for eligible patients.
Several trends are driving this:
– Highly effective induction regimens (especially daratumumab- and RVd-based combinations)
– Greater use of MRD-guided strategies
The [DETERMINATION] results showing no overall-survival advantage for early transplant versus delayed transplant
– Expanding use of CAR-T and bispecific antibodies in relapsed disease
– Older average age at diagnosis.’
However, in both the US and the UK, transplants are still part of the official first line standard treatment.
Personally, my priority too was quality of life. My response to treatment was ‘very excellent’, and within weeks of going into remission I was off on holiday (though with fatigue and a weakish immune system). I am still in remission.
I am not trying to sell anything to you: simply giving my experience, together with information.
By the way, my stem cells were harvested: I could always have a transplant in some time to come.
Regards
Rabbit
I am posting on behalf of my husband Chris, diagnosed last April with Multiple Myeloma,no organ damage or lesions or symptoms,just picked up on a routine blood test. He is 67.Following very successful induction treatment last year and excellent care at Addenbrookes in Cambridge, he was very much on the Stem cell transplant trajectory. He was undecided for many of the reasons you have mentioned. In the end he went ahead with the collection of the stem cells which was very successful and these can be stored for up to 10 years. He agreed a break from treatment to consider his next steps and after a couple of months break when he generally felt well, he decided not to go for the STC but to try the Lenalidomide maintenance regime. We also felt there was little information about the prognosis without the transplant but I am guessing that is because in the UK, there is not much research data available as most patients have the treatment. Unfortunately the first dose of the Lenalidomide treatment made him very unwell and his consultant agreed for him to stop, have more blood tests and maybe go back to the treatment but on a lower dose of 5 mg. That is where we are at the moment. I think there is also the option to “Watch and wait” ie have no treatment but regular blood tests and resume treatment if there are indicators that the Myeloma has returned. I agree that quality of life is very important and my husband found it very hard to go from feeling perfectly well to suffering the various and prolonged side effects of the treatment. He could not face another year written off with no guarantee of a positive outcome. It is important to recognise that Myeloma is a very individual disease and different people react differently both physically and mentally and it is a big adjustment to make.
Thank you Loubella and Rabbit for your comments and sharing the personal information. They are very helpful in many ways and highlights that SCR isn’t necessarily the way I have to go.
As you say everyone will react differently to any of the treatments but the insight you have given me is very thought provoking.
In depth conversations need to happen with the consultants and further research by myself. Although I now feel that I definitely want to have the smallest amount of down time that’s possible to maintain a quality of life if possible, even at the expense of longevity.
I hope your husband Loubella and yourself Rabbit find some peace at times within the difficult situation we find ourselves in.
Apologies Loubella, I thought my reply was to yourself and another person who had posted – I’ve now discovered that the replies are individual.
Sorry for any inconvenience.
Thank you Rabbit for your comments and sharing the personal information. They are very helpful in many ways and highlights that SCR isn’t necessarily the way I have to go.
As you say everyone will react differently to any of the treatments but the insight you have given me is very thought provoking.
In depth conversations need to happen with the consultants etc including further research by myself. Although I now feel that I definitely want to have the smallest amount of down time that’s possible to maintain a quality of life if possible, even at the expense of longevity.
I hope that you find some peace at times within the difficult situation we find ourselves in.
Hi Loubella,
Thank you for sharing your and your husband’s experiences.
You said that “We also felt there was little information about the prognosis without the transplant but I am guessing that is because in the UK, there is not much research data available as most patients have the treatment.”
There have been lots of clinical trials testing the effectiveness of different treatments. Although some of these trials do involve UK patients, they are done all over the world and the results shared globally. There is therefore plenty of data (it’s a bit of a mishmash of inconsistent trials but that’s a different matter).
I think that the reason why UK myeloma patients get nudged towards DVTd plus stem cell transplant as the first line of treatment is that it is the NHS standard. Although the NHS occasionally gets called “the UK national religion”, it can be somewhat dogmatic in its approach.
Regards
Rabbit
I had my stem cell transplant on Sep21 and I would say I was back to doing most things I wanted too after 4 months. My hair had grown back by then and I was feeling mostly ok! I retired around the same time so I can nap whenever I want! I’m not so sure going back to work would have worked well.
I started on Lenalidomide in Jan22, and after a month I had to stop due to a red rash all over my abdomen. I started again on the same dose (10mg) after 23 days following a discussion with my consultant on my regular appointment. I’m still taking it at this point May26.
It’s impossible to say if going down the SCT route was the right route, but the stats I was shown advised there was a longer remission period before the cancel returned, both with the SCT and lenalidomide. I’m currently still in remission after 5+ years.
I’ve got the other half of my stem cells still frozen away and I would likely go down this route again if required. The first week after being given the malfalin was awful, but after that I started to improve and was home within two weeks, although still very weak.
Hi Like blobgob I had a SCT in Addenbrookes, in my case in January 2022. I was in for 3 weeks as I picked up an infection just before I was due to go home and had to stay until that had cleared up. The first couple of weeks post SCT were not pleasant but I would do it again if offered. Once I was home it took a couple of months of gradually building up my stamina to get back to where I was before (walking 3 miles a day with the day and then some longer walks with friends).
I do not work as I was retired when diagnosed but am luckily very healthy and work on staying fit. I am now a carer for my husband who has a neurodegenerative disease similar to Parkinson’s which affects his balance swallowing and now cognition so I am hoping the remission will continue.
I know for some people SCT may seem daunting but my experience it was hard for a relatively short period but has had a very positive outcome.
Good morning rabbit,
I have my first main treatment review next week that also includes next treatment options, after I’ve had to push to have these offered and discussed.
The idea of the SCR still doesn’t appeal to me with what seems to be an average of six months (ish)to reach an acceptable operating level.
Which treatment did you choose instead of the SCR if you don’t mind me asking please?
I have and am considering the same approach as yourself i.e. to harvest the cells although not proceed with the SCR at this stage.
I’ve had to cancel a solo holiday and have a large family/friends holiday that has been planned for a long time to Corfu that I now not may be able to attend. I appreciate everyone’s response to treatment is different, to manage fatigue with a reduced immune system and be able to travel is basically where I’m at currently and would like to do so, although I’ll need the doctors approval I assume?
As I’ve previously stated quality over quantity is my approach and to be able to carry on with my life as I am (as you seem to have done) appeals far more than an unknown SCR downtime/recuperation level when I could potentially use that time more effectively.
Thank you again for your replies and the feedback you have provided me, good luck for the future.
Regards,
Peter.
Hi Peter,
The sequence of my treatment went:
– ‘Induction phase’. 4 cycles (a cycle is 4 weeks) of Daratumumab weekly, Revlimid = Lenalidomide daily, Velcade = Bortezomib weekly and Dexamethazone (‘Dex’) twice a week. Thalidomide is similar to Lenalidomide, with a week off for each cycle.
– Break in treatment, then stem cell harvesting.
– ‘Consolidation phase’ the same treatment as in the induction phase, for 2 more cycles. Apart from not having a transplant, this is the normal treatment.
– Maintenance. This was originally Daratumumab and Dex, once per cycle, and Lenalidomide daily (with a week off per cycle). The Lenalidomide dose was reduced from the start (because maintenance is about preventing/delaying myeloma returning), the Dex likewise. The Lenalidomide was further reduced and then stopped due to side effects. Daratumumab is ongoing.
I am ‘high risk’ (= my chromosomes are messed up) which makes my myeloma more aggressive than most so this is more maintenance than usual.
Despite that, I have just celebrated 3 years in remission.
One thing that probably helps: I am doing what I reasonably can in terms of healthy lifestyle: lots of exercise, vegetarian and eating healthily, don’t drink much…
Regards
Rabbit
Hi Rabbit,
Thank you very much for your reply and it’s extremely informative.
I’m in the middle of my induction cycles of Daratumuab, Bortezomib, Dex and Thalidomide (other antiviral tablets etc obviously) although with no breaks in between.
It’s good to see that the SCR isn’t the be all and that a consolidation type phase with maintenance is a something for me to certainly bear in mind mind if it’s offered/available to me
I too strive to maintain activity levels, a varied diet and since the start of treatment no alcohol, could be different if I’m able to go on holiday of course. I personally try not to dwell on the fact I have the disease as I can’t really influence its progression etc although I can influence decisions regarding my quality of life. Thus my forum enquiry and questions to yourself as someone who hasn’t followed through with the cell replacement to date and which appeals to me.
Thank you again for taking the time to respond, for kindly letting know your treatment plan and that it seems to be working for you.
All the best for the future.
Regards,
Peter.
Hi Peter, I posted my message on here yesterday, but it seems to have disappeared as I tried to edit it. My attitude to SCT was positive, I asked the consultant if an allo SCT was possible in the first treatment line, but it wasn’t. I had an auto SCT in June 2022, approximately six months after induction with DVTD for four months. I thought its benefit was that the SCT had been a long-used treatment which put many people into a lasting response. As well as its strong clinical place, I tried to buy time for a possibility of a CAR-T which is still not available in the UK on NHS today. I am aware that clinical recommendations are that a patient should have a CAR-T first and then bi-specifics in the further relapse and not the other way round. I achieved a very good partial response from SCT and take lenalidomide for maintenance. My paraprotein has reduced but has stayed on a small level since my SCT, it’s been four years now. I returned to work one year from the diagnosis and treatment. It’s not always been an easy journey, but I don’t regret having SCT despite it not being a pleasant treatment, in my view it has a strong myeloma fighting power.
Hi Sammy,
I was about to reply to your previous email when it disappeared! I was puzzled – there is so much spam on this forum, and then the moderators delete a genuine post? 😀
This is a slight change of topic, but still relevant to this forum. You said “As well as its strong clinical place, I tried to buy time for a possibility of a CAR-T which is still not available in the UK on NHS today. I am aware that clinical recommendations are that a patient should have a CAR-T first and then bi-specifics in the further relapse and not the other way round.”
I will explain first in a bit more detail, as us patients and carers should I think learn this stuff (I am simplifying a bit below).
Many of the newer treatments are immunotherapy: they enhance the body’s normal immune system so that it attacks myeloma cells. As myeloma cells are basically mutated forms oh healthy cells, the immunotherapy gets the immune system to attack bits (antigens) of myeloma cells that are not in the healthy cells.
Three of these differences have the catchy names of CD38, BCMA and GPRC5D. For example, Daratumumab and Isatuximab target CD38.
Many of the new treatments, including the CAR-T ones and the bispecific antibody treatments Elranatamab and Teclistamab target BCMA.
The issue is that myeloma cells can develop ‘resistance’ to a treatment: one reason why it generally comes back. With a treatment that targets an antigen, the myeloma may adapt over time by having less of that antigen.
Therefore, if you have a treatment like Elranatamab or Teclistamab that targets BCMA, it can make other treatments targeting BCMA less effective.
Background over!
Sammy65, you are right that no CAR-T treatment is approved in the UK yet. However, if you have a BCMA-targeting bispecific, the myeloma do seem to reverse their adaptation after some time. Also, the MajesTEC-3 and MajesTEC-9 clinical trials are showing that Teclistamab – with (MajesTEC-3) or without (MajesTEC-9) Daratumumab – is a very effective treatment (though with some unpleasant side effects). Maybe CAR-T simply isn’t such an important option anyway.
Meanwhile, Talquetamab is an approved bispecific treatment which targets GPRC5D, so is unaffected by being refractory to BCMA.
Then there are the treatments that are not immunotherapy…
Regards
Rabbit
Hi Rabbit, I am not sure why my post took a D-Tour. I am not a frequent contributor as I have learnt to focus my energies where they are needed most. Fatigue has been an ongoing issue for me. I have also spent a lot of my time before trying to advocate for the CAR-T without producing any seeming effect or success, apart from getting a big No.
It is true there are similarities between the bi-specifics and CAR-T as either treatment is designed to target specific myeloma antibodies. However, their mechanism of action is different in that the CAR-T uses own body’s own cells that have been genetically engineered in vitro to to be then put back to the patient, to do the job. Those cells kill myeloma cells de facto and can survive in the body for some time. The response can be deep and lasting. Whereas the immune therapies must be repeatedly dosed over the time which gives myeloma more room to adapt, as you have said too. Don’t get me wrong, any treatment is a God sent; however, CAR-T and immunotherapy are different. I am aware that even Myeloma UK was encouraging a shift in paradigm in equality of the bispecific and CAR-T. Interestingly, it happened about 2, 5 years ago after it became known that the submission for CAR-T to NICE did not take off as the manufacturer foresaw insurmountable problems they were facing with NICE if they had made a submission. But no, it was sour grapes claims, exaggeration from Myeloma UK that we don’t need CAR-T over here as we have other treatments. CAR-T and immunotherapy are different. I hope that CAR-T gets an approval soon, but I know it will not be soon, unfortunately.
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