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2nd stem cell transplant
I am Jane. 61 years old and am 2 and a half years post transplant. Having had seemingly a marvellous recovery, a few weeks ago I was told the AML has returned. I have had a one month cycle of 6 chemos . I am told that if I get into remission I may be offered a 2nd transplant. New donor probably. Anyone done this successfully? The thought scares me to be honest. I had never considered this as a possibility, but maybe I need to.
Comments
I'm really sorry to hear that you've relapsed and that you may bey facing a second transplant. Sadly it's something we all face and it does happen from time to time.
I'm one of the community champions here and have been around a while so I know that this has been raised before with other patients in a similar position. I've posted links to a couple of threads below which may help and above all else will let you know that you are not alone in facing this.
https://www.anthonynolan.org/patients-and-families/anthony-nolan-patients-families-forum#/discussion/308/dli-for-late-relapsed-mds
https://www.anthonynolan.org/patients-and-families/anthony-nolan-patients-families-forum#/discussion/comment/1133
You're probably aware that Anthony Nolan campaigned hard last year for second transplants to be available routinely on the NHS as there was a proposal for their availability to be very limited. Thankfully the campaign was a success and the proposal was reversed, but the main reason for that was that it is proven to have a good success rate.
From what I understand the second transplant is not as arduous a procedure as your first transplant was and will hopefully get you back on track if you go down that route.
The Anthony Nolan team will be able to give you more advice and don't hesitate to contact them directly. Your medical team will be aware of what options are available and will pursue the best option for you.
Please keep in touch and let us know how you get on.
Best wishes,
Steve
I'm so sorry that you are facing chemo and a possible transplant again, it is what we all dread - it must be devastating for you. I am replying to both this and your 'coping with tiredness' thread. I have been battling non Hodgkin's lymphoma for many years and one of the worst moments was when I relapsed after my autologous transplant.
Dieseldrinker has already mentioned what I was going to say - Anthony Nolan campaigned so hard, getting us all to write to our MPs etc, about the funding of second bone marrow transplants and was successful so there must have been solid evidence that they worked, to persuade the government to continue to fund them.
I'm sure I've seen case histories on the AN Facebook page of people who've had this treatment successfully.
I find it amazing how much chemo our bodies can tolerate and bounce back from. Fingers tightly crossed that this course gets you back into remission.
I think I'm speaking for the community champions and Anthony Nolan in thanking you for keeping in touch with us as we do wonder how people using the message boards are getting on.
With best wishes,
Sue
Thanks for posting again, I hope the next cycle of chemo goes well.
I have worked with patients who have had successful second transplants, the fact you had 2 years in remission from the first one is positive. Obviously it is very disappointing to relapse and the thought of a another transplant is not easy for you but this will be only offered to you based upon your response to your current treatment and how you feel physically and psychologically. Sometimes a new donor is used but this will be a decision made by your transplant consultant. Like Steve has said the positive is that if you did need a 2nd transplant this is now routinely accepted on the NHS.
If you would like to meet someone who has had a second transplant maybe ask the transplant team and they might be able to put you in touch with another patient. Or if this is not possible at least discuss your concerns with the consultant.
I am more than happy to discuss this with you over the phone, you can call me on 0207 284 8229
I hope the rest of the chemo goes well and keep in touch.
BW
Hayley
Jane
From my personal anecdotal experience I know that chemo can make all the elements of the blood count dip as it is affecting the bone marrow. My team never seemed too concerned about the week's delay. In my case, it wasn't the disease as my lymphoma didn't make the counts fall.
I'm so glad you're feeling well at the moment - it's very strange that you can be completely oblivious to your white cells falling, isn't it?
Best wishes,
Sue
This is very normal, sometimes chemo has to be delayed if the WBC are too low. Giving chemo now will leave you even more neutropenic and at risk of infections plus it will take the bone marrow even longer to recover. Leaving it a week will just allow the WBC to improve enough. Try not to worry, its good that you still feel well and enjoy the extra week off.
Best wishes
Hayley
Thankyou
Jane
Thanks for the update. It sounds like a waiting game till your counts start to climb a bit. I guess the GCSF injections are directed at getting your cells going.
It's good that you're staying positive and I hope you can stay that way with our help. Please keep us posted, we're here for you and all rooting for you.
All the best,
Steve
That's brilliant news. Thank you for letting us know. Good luck with the next round.
Best wishes,
Sue
Best wishes,
Steve
Sorry to hear your news. I have just been through a similar experience. I developed MDS following treatment for AML
Best wishes,
Rob.
So often someone has a problem that they may think is only affecting them and it's so good for them to hear that the problem they face has affected someone else. Talking about our experiences and the things we've encountered helps reassure others that they are not alone and in this case gives hope that the problem has a chance of being resolved.
Jane, I hope this does reassure you a little, though I realise your mind is probably still in turmoil and you have some way to go. Fingers crossed that your treatment goes as Robs did and you can get back into remission and have that second transplant. It's good that you are still feeling well and I hope things stay that way so that if you do get that chance of a second transplant you are feeling well going into the process and it goes smoothly.
Rob, I also lost a lot of weight during my transplant and a lot of muscle during my recovery. I was amazed how much muscle I lost particularly on my legs, such that I didn't have the strength to climb the stairs initially and had to resort to crawling up them. I can assure you that the weight does come back (and more in my case!) as does the muscle, it just takes time as I'm sure you realise.
Best wishes to you both.
Steve
I am currently on my 3rd round of chemo. Not doing too badly. Sore injection sites, but I'm sure it could be much worse. Not likely to hear about whether it is being successful in getting me into remission until after Christmas, which may be just as well. Still swinging between days of looking ahead and making plans, and staying firmly in the here and now (this seems generally the better option) It has been suggested recently that a DLI may be a possible first option if I get into remission. This is a welcome option for me of course ....but still all theoretical at the moment. Hoping you are all doing well yourselves.
Jane
Thanks for the update. I'm glad the chemo is going relatively well and you're coping well apart from being tender around the injections. Hopefully the benefits will outweigh the discomfort and you get the result you're looking for by getting you back into remission.
Fingers crossed for some good news after Christmas then and you can carry on with the DLI, which I know a few other members have spoken about in other threads.
Keep looking forward and focus on getting through this and out the other side. As you can see from the number of views on this thread, we're all with you every step of the way.
All the best,
Steve
My choices are
2nd transplant. Start again. High risk potentially better outcome.
Or
Azacitidine plus DLIs . Less aggressive treatment, mostly outpatient, lower risk ( nothing is risk free as we know) but lower chance of success.
I am in a bit of a whirl, trying to think clearly and make a decision as to which route to try. Obviously the transplant would involve a lot of "maybes" along the way as well.
I know the decision is ultimately mine......any advice as to how to go about it?
Rob, did you have a choice before you went ahead? If so, how did you go about it? Any regrets?
Best wishes,
Rob.
In terms of your decision presumably if you are in remission at the moment then you would just need the conditioning chemotherapy (Fludarabine/Melphalan?) prior to transplant rather than anything more intensive? My experience of the conditioning chemotherapy 2nd time around was that it was very tolerable. I didn't suffer too badly with mucositis - I just had some discomfort on swallowing for a couple of days and a bit of diarrhea. My blood counts also recovered pretty quickly and I was discharged 17 days after transplant. I haven't suffered any significant GvHD post transplant but I have had reactivation of both CMV and EBV which required some outpatient treatment. Five months after transplant I do now feel that I almost have my life back.
In terms of decision making I think ultimately be guided by your gut. I hope everything goes well for you. Stay positive!
Best wishes,
Rob.
I have been offered a second transplant and my admission date is May 18th. I have been warned it will be more intensive chemo (didn't think that was possible- I had flag Ida last time) and longer stay in hospital. My consultant says we need to hit the leukaemia longer and harder to aim for no relapse. I have to trust him when he says he wouldn't suggest it if he didn't think I could cope...but I have to say its a pretty scary thought. Longer time in hospital, longer recuperation, pressing for GVHD and hoping its treatable and not chronic. You know the score. I have to give it a go, I am settled with that. Am now going to enjoy my next three weeks relaxing and resting I think ready for the fight! Any advice on preparation? Or anything else for that matter...it is good to know of people who have done it and got through ok.
Thanks
I only had the standard reduced intensity conditioning prior to my second transplant so our experiences won't be directly comparable. I think as you say you need to listen to the experts - they want to give you the best chance of a permanent cure. I fully understand that there is a lot to worry about though. You are absolutely doing the right thing in resting and preparing for the fight. Get yourself as fit and strong as you can. In terms of advice a routine is important, try and keep as mentally and physically active as possible, try and eat (little and often). I'm sure you know all that anyway. One last bit of advice stay positive, I used a lot of visualisation techniques which i found helped a lot e.g. I used to visualise what i wanted my future to look like, grandkids running round my garden etc. I think the mind has a lot of unharnessed power. I hope that the transplant goes well. We are all pulling for you.
Regards,
Rob.
I’m sure you must have many issues racing around in your head at the moment, and it’s totally understandable without a doubt. I do hope everything keeps going well for you and that your team keep you informed and answer all the questions you will have along the way.
Yes I can imagine you were surprised on intensive chemo again but like Rob said the experts know their stuff and if it’s a chance of a permanent cure ??
Enjoy some quality time to yourself now. We really do wish you all the very best Jane
Mandy
Best wishes,
Rob.