I’m being advised to have stem cell transplant and I’m very worried. I would be grateful to hear from people
Hi I’m being advised to have SCT and I’m very worried. I would be grateful to hear from people thank you
Hi @Bees. There will be lots of people on here who will be able to share their experiences of Stem cell transplant with you. I can imagine you have so many questions. Remember the support line is there if you need to talk things through. Also, there are a few conversation around this topic. If you type it into the search bar you will see them X
I’m sorry you’re worried about this. It’s a frightening time.
I had a Stem cell transplant on Jan 20th this year, for acute myeloid leukaemia. It had been mentioned as a possibility to me from the moment I was diagnosed, but when they actually said I needed it to survive, I was very worried, and I really didn’t want it. I cried at the news.
The reason I needed a Stem cell transplant was because I had a gene mutation that made relapse more likely, so I didn’t really have much of a choice. But my consultant did actually say I should be happy that I was deemed in need of a Stem cell transplant, because it’s the treatment most likely to provide a ‘cure’ (not that they like to use that word.) I now read other people’s blood cancer stories, and actually I’m glad in retrospect that I had to go straight to the Stem cell transplant, because other people seem to have lots of chemo, then the trauma of a relapse, then more chemo before a transplant. I’m glad I avoided that extra chemo and trauma.
As for the Stem cell transplant itself, it’s not fun, but actually it’s the chemo just before which causes all the grief - so if you’ve had chemo before, you can expect it to be much like that. The Stem cell transplant itself is just a bag of cells dripped into you.
My recovery has been surprisingly quick and smooth. Not every one has a smooth ride, but it is possible. And I actually feel fantastic now. I have no regrets about the treatment.
Maybe you need to speak to the transplant team? Be prepared for them to give you lots of grizzly - and perhaps out of date and conservative - statistics. But they can also reassure you that care during transplant has never been better, and that lots of people get their health back through this procedure.
Whilst being treated, I received maybe 15 pints of red blood cells, and perhaps 8 of platelets. I didn’t worry about having these given to me - I knew they were saving my life. And it is no different with the stem cells- they are a donated infusion given to help you, and it is as simple really as having a pint of blood.
I hope something here helps put your mind at ease a bit.
All the best
Hi @Bees, I can understand that you are feeling worried as SCTs are a big procedure with many risks attached and I remember feeling utterly terrified when these were all explained to me. Of course with Blood Cancer (Myeloma in my case) it’s hard to make predictions based on other people’s experiences, as we all seem to present so differently and respond differently to treatments. This is my personal experience:
I have had two SCTs, in 2013 and 2020 and I am thoroughly glad I did as I was originally diagnosed in 2012 with up to 3 years survival predicted. I had near-complete remission after the first transplant (which unusually become complete remission a bit later on) and Stringent Complete Remission after the second. It seemed to me that various small details had improved between 2013 and 2020, even though the basic procedure (I think) is fairly unchanged. For example, in 2013 my cells were harvested into one big bag whereas in 2020 they were harvested into lots of small bags because apparently fewer cells are lost in the defrosting process of small bags. I’m not a scientist so I took their word for it but my time of being neutropenic was so much shorter this second time and my stay in hospital was halved. That was nice because it took place during the pandemic and I was not allowed any visitors. I was just so happy to go home. So I am glad I went ahead and I am so grateful that this treatment is available on the NHS in England but I do absolutely remember the stress of making the decision.
Listening to other people’s experiences during this time, though, some people are suggesting that staying on maintenance doses of some of the newer treatments is as good or better than having an Stem cell transplant. Has your consultant discussed all the options with you? My personal opinion is that I love this drug-free time. All I have now is a monthly infusion of Zometer (biophosphonates) and I feel very well. I am writing this to reassure you that having a Stem cell transplant can be very successful and beneficial way ahead although you can’t discover this in advance, so to speak. I am sure you will get plenty of good advice on this Forum and elsewhere and wish you the very best in deciding what is right for you.
Hi @coastgirl, thankyou so much for your really positive view of Stem cell transplant. I also have myeloma and am just recovering from my first transplant. It’s really nice to hear that you have done so well on the treatment. I find docs a little conservative about giving any prognosis. I appreciate that everyone is different but I’m always heartened when I hear someone had transplants many years ago, followed by another and is still doing so well, thankyou xx
Hi @Bees a great big welcome to our forum and you are certainly in the right place here.
I am not surprised that you are very worried, that is only natural.
It sound so scary doesn’t it.
It is unknown to you, what does it entail.
People have shared their experiences with you and if you would like to speak to someone the Blood Cancer UK support line details are above.
Have you got support from family and friends? Now you have us to support you.
Please keep posting as I would like to hear more about you.
Look after yourself.
Well done for getting through your transplant! It’s an amazing feeling once the neutrophils start coming back! I hope you are getting a good balance of rest and activity. I’m happy that I helped you feel heartened by my experience so far. When I was first diagnosed (and felt as if I was falling through a lift-shaft very fast which is the only way I can describe it) I asked my husband to search online for hopeful stories and to filter out the bad ones. He was great at doing that for me and I held on tight to all the positives that he found.
I hope that your recovery will continue really well.
Hi @Coastgirl, Thankyou so much for your best wishes. My doc has said that a second transplant would be possible in the future (comforting to know) but hope that’s a long way off! I know exactly what you mean on diagnosis, I didn’t do the lift shaft but did nearly drown in my own tears. My husband did exactly the same thing, with the positive stories, that’s such good advice. There is so much out of date gloom on Google that it’s really best to avoid it, particularly if you are newly diagnosed. You’re a Star, here’s to a long and happy future for us both. x
Hi fullofbeans, great name. Yes I have Acute Myeloid Leukaemia. I feel so well and normal at present but my consultant thinks it’s best I have Stem cell transplant. The isolation I’m not keen on and to go back to the dark place when I was first diagnosed and so ill is not something I want to do.
The percentages I’ve been told about are scary and I find it such a difficult choice to make but in the end I suppose I will take consultants advice and recommendation.
I was looking and hearing about The Gherson Therapy but I was advised it was not recommended for Leukaemia sufferers. I also had suggestions of cannabis oil ??? Don’t know what to think about that one. And I also have a friend who couldn’t find a donor but has lived on for 12 years without Stem cell transplant. Would I be that lucky. It’s such a difficult decision and you would have to be very brave I feel to go against the recommendation of your team. Thanks so much for your replies and I’m glad I found and joined this forum
Just to give you some more information about me. I am Gary. 65yr old male. I live in Liverpool and I am being treated at The Royal Hospital/Clatterbridge centre. I am on 2 forms of chemotherapy. Azaitadine and Ventoclax which I have responded to very well, but I am told there is still a minute amount of Leukaemia in my body. Something like 0.003. It was first suggested to me I could stay on this indefinitely. My consultant said, “why take the risk of Stem cell transplant when you are doing so well on this”
Now we are 2 months on and he now is saying they don’t want to be behind the curve chasing it should I relapse.
There is also not a long history of these 2 types of chemotherapy being put together so I’ve not got the fortune of looking back any distance.
I hope this gives you insight into me a little more.
Nice to meet you! And I’m Rebecca, btw, and I’m 51.
I’m really sorry you’ve had the misfortune of an Acute Myeloid Leukaemia diagnosis too. It’s shattering, isn’t it? Such a scary illness, and the treatment is pretty horrendous too. I know what you mean about not wanting to return to those ‘dark days’ of isolation and soul-destroying chemo illness. Those are the worst times. I was discharged from hospital after my Stem cell transplant at the end of Feb this year, and the whole experience just feels like a surreal nightmare now - surely I couldn’t have gone through such horror? Not the Stem cell transplant so much, but the chemo and the infections. And I even recently had what I can only describe as a PTSD flashback - the smell of a certain cleaning product in our bathroom reminded me of the hospital bathroom, and all the hours of mucositis misery I had in there, and I burst into tears out of the blue and felt physically sick - which is most unlike me. So I do get that you don’t want another second in that environment, feeling that bad. Who would? It’s the most hellish scenario probably either of us has ever experienced.
However, I would take your consultant’s advice very seriously. They can’t recommend everyone for a STC, because they are expensive and risky. They only advise going ahead with one if the benefit to you outweighs the risk. Which means they must consider your present status a risk. The figure you’ve given about leukaemic cells still present in your system, doesn’t unfortunately mean anything to me - but it is a small figure. However, that doesn’t necessarily mean the risk is small too - and clearly it can’t be, if the consultant’s recommending you for transplant. And ditto the transplant team - they don’t take on patients with negligible risk, because there are so many at risk patients who need this procedure. So you must be in need.
Also, it’s worth thinking about the future. What if you turned down the Stem cell transplant, only to relapse, and desperately need the Stem cell transplant after all? Would you be considered too weak or ill to cope with the Stem cell transplant at that point? This could be your only chance to have it. There’s an age/health cut off point with SCTs. It might be worth establishing what this roughly is.
I was deeply upset when my consultant informed me I needed the Stem cell transplant. I thought I was near the end of my treatment, and the thought of more filled me with despair. And it made me realise I must be in a more precarious position than I had thought. And actually, a registrar had delivered the news of my RUNX1 mutation making relapse more likely, with little thought to my feelings, so I was a bit cheesed off. And I said so. My consultant was very blunt. He said that I should consider myself lucky they had identified a gene which qualified me for Stem cell transplant, because Stem cell transplant is the best route to a ‘long term solution for blood cancers.’ He said he shouldn’t use the word cure, because all cancers have the potential to return, but cure was what he meant. And that certainly did make me sit up and feel like I was actually being given an opportunity. I’m so grateful he was a bit stern with me and put it like that. And in the literature too from the transplant team, a similar phrase was used - something along the lines of a Stem cell transplant being the ‘best treatment’ for leukaemias.
I won’t lie and say the 6 further weeks in hospital for the Stem cell transplant were ok. They weren’t. I had to go to another hospital even further from my family, and even though I wouldn’t have been able to see them anyway, the greater distance did make me feel more isolated. And the experience itself was just like another stint of chemo and recovery - horrible. But the time actually went quite quickly because I felt so chemo rough - I just curled up and slept. And I kept telling myself this was the last leg of the treatment, and by having this treatment, I wouldn’t have to live in fear. I was very worried that after chemo only, I would be paralysed by the fear that the leukaemia would return. And that I wouldn’t be able to live my life. With the Stem cell transplant, I have the greater ability to relax now - and I really have, because I feel fantastic.
I do admit though that to date, I seem to have had a bit of an easy ride with my post-Stem cell transplant recovery. I see other patients in the waiting room, having problems with Graft-versus-host-disease etc. I’ve not had those problems, perhaps because I had my brother’s cells, and he was a full match. So I’ve been very lucky. It seems recovery in the first couple of years can be very variable, and others do have bumpier paths.
I don’t know anything about the alternative treatment you mention - but it sounds like it isn’t ideal for Acute Myeloid Leukaemia. And actually, I did ask my consultant about cannabis oil, because a couple of people were trying to push that on me as a potential cure (which I wasn’t inclined to believe, without medical evidence.)There are so many stories about it supposedly curing people - but this is all anecdotal. There haven’t been significant medical trials revealing it is actually the cure for cancer. I think we’d know about that! And my consultant advised not to take it, because he had read there is evidence it speeds up cell division- which is a definite no-no where cancer/leukaemia are concerned. I think you should ask your consultant about this. The problem with cannabis (because of it’s illegal status) is that everyone discusses it with the wrong people- non-experts. It should be a discussion to have with your consultant. I’m sure they have this discussion with every single patient, and don’t mind at all.
Anyway, I hope something here gives you food for thought, Gary. It isn’t an easy thing to decide, particularly when you’re a little older and feeling well. I think you just have to imagine how you might feel if something goes wrong and your options are suddenly fewer. And how you would feel if you stepped out of that hospital room with a Stem cell transplant under your belt, and with the prospect of no further awful, invasive treatments to go. It’s a very personal dilemma, and only you can decide what to do.
If you want to, let us know what you decide. And how you get on.
All the very best from someone who understands the horrors you’ve faced.
Hi Gary and Rebecca @Bees @Fullofbeans, gosh Rebecca what a really good comprehensive reply to Gary.
Gary you are obviously looking at a lot of information on the internet and perhaps your medical team are best placed to advise you as they know your medical history etc, but there is nothing to stop you asking for a 2nd opinion, or getting one privately at your cost of course.
I would be wary of alternative medicines whose claims might not be research or medically based and it might be worth checking them out with you medical team.
A stem cell transplant is a very scary, and for you unknown proposition.
Perhaps ask your medical team direct questions like why are you now saying a stem cell transplant advisable when it wasn’t before?
Perhaps ask them what a stem cell transplant procedure would entail and be like for you?
There is reliable information on the Blood Cancer UK website and their support line details are above.
Please do let us know how you get on. Look after yourself.
I have been advised by my consultant that at the end of my 4th cycle of chemo that he will refer me to the University College Hospital in London for a Stem cell transplant, ie end of October. l have been having private treatment but unfortunately the Stem cell transplant isn’t covered under my health care scheme and l will have to transfer to NHS. Also my gp referred me to a nhs haematologist because of this and l was told that the chemo l was having l wouldn’t have received under the nhs as it was not approved by NICE, ie the combination medication of lenalidomide , injection bortezomib and steroids, dexamethasone and therefore he was not able to assist further. Anyone else expeienced this ?
So much support for each other in this conversation. I haven’t commented much as I don’t know much but the support being given is just amazing! X
Hi @petergreenfield, perhaps the transfer to an NHS haematologist and hospital does give you a sort of 2nd opinion.
I have heard good things about the University College Hospital in London.
I hope there is someone out there who has gone through the transfer process from private to NHS who can share their experiences.
Please keep posting and It will be a weird time for you at the end of October, I certainly get a connection with my treating team, I hate endings and then find it difficult to build up the same type of relationship with another medical team.
Look after yourself.
It sounds like you’re having a rough and confusing time. First of all, I hope you don’t feel too bad after 4 rounds of chemo? And secondly, the differences between private and NHS care are issues you really don’t need on top of everything else. I’m sorry you’re having such a worrying time.
Is your NHS haematologist saying he can’t offer you treatment at all, because you’ve had chemos that NICE don’t recognise? Or are you still on for a Stem cell transplant this month? If the former, that doesn’t sound right. Patients must transfer from private to NHS care quite regularly, according to what their health care package covers, and so differences in medicines used must crop up often enough for NHS doctors to have a plan. Perhaps you need to get another NHS opinion on this? And could you discuss this too with your private consultant? They must understand the chemos used, and why an NHS consultant would have some hesitancy about further treatments, following these initial chemos. They ought to enlighten you further really.
It’s very unsettling not to get the answers you need at your appointment with your consultant - but do remember they are there to answer your questions and put your mind at ease. That is part of their role. So if you need to approach them again to clarify what are very important issues, don’t hesitate to do so. Really they should have checked that all was clear to you.
All the best. And very good luck with this.
Thanks very much Rebecca and Erica for your support and knowledge. I do really appreciate it. Yes I will keep you informed going forward and it’s nice to have people who understand xxx much luv
Hi @petergreenfield, nice to hear from you again. I was diagnosed with myeloma privately, didn’t have insurance but felt so poorly I just paid for it as my normal surgery hadn’t managed the correct diagnosis over 7 months. I was immediately referred to the NHS and fast tracked. I had similar medication to you via the NHS but cyclophosphamide rather than lenalidomide but it was very effective and reduced my para proteins to 4.6 rather than 41 at the start, with no proteins showing in the bone marrow. The lenalidomide is a new drug that was approved by NICE recently for myeloma patients. I am just recovering from my stem cell transplant now but I will start maintenance therapy in 3 to 6 months time which will be lenalidomide so it is available on the NHS for this stage of the treatment. I understand that it is very effective in keeping the myeloma at bay long term. Hope this helps. XX
P S everyone thinking of the stem cell transplant process, see the thread ‘Awaiting or considering or had a stem cell transplant’ It’s the story of both types of transplants autologous and analogous from recent experiences
Thank you all for your comments. Actually ’ fullofbeans’ l am not confused just slightly apprehensive about the transplant procedure. l went to nhs haemalotologist for another option, but he he felt it was more appropriate in the circumstances for the my private haematologist to refer me on. He is a consultant at the the UCH so that may help. l felt pretty good in the first cycle but went down hill until fairly recently, because of the back pain l wasnt able to do much and made me very depressed and felt like it was difficult to cope with most things, but a councillor and family support have helped me a lot. I am now doing a lot more and driving which l wouldn’t have been able to do a few weeks ago and feel in a much better place. I am due to further discuss with my private consultant in a couple of weeks and want to know a lot more and other options. He has said he is very please with how the treatment is going.