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2nd stem cell transplant

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janemill Total Reaction Points: 22
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.
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Comments

  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 291
    Hi Jane,

    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
  • SuePSueP Total Reaction Points: 60
    Hi Jane,

    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


  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 80
    Hi Jane

    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
  • janemill Total Reaction Points: 22
    Thankyou all so much. I feel a bit more positive now. I know this may not even be a possibility as I may not be offered one ( that will be up to the doctors and dependent on me getting into remission anyway, I realise) but I am the sort of person who likes to think things through for a while rather than have to make a decision say, over a weekend. You have given me some positive help thankyou. I will read the links that Steve sent, and it is kind of you to offer to talk it through with me, Hayley, I may well be glad to do that.
    Jane
  • janemill Total Reaction Points: 22
    Update. Went for my second round of chemo today only to find my white cells have dropped too far. We are now waiting for them to rise up and I am back next week when hopefully we can get going again. Is this a normal part of this treatment ? I had been under the impression that it was every 28 days on a regular basis. The first time round, they didn't recover, so I had just had regular transfusions until my transplant. Is this again possibly a sign of leukaemia rather than the chemo? And how would they know? Strangely, but thankfully, I am feeling well, and plan to enjoy my extra week and avoid infections!
  • SuePSueP Total Reaction Points: 60
    Hi 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
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 80
    Hi Jane

    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
  • janemill Total Reaction Points: 22
    Update. Bloods the same. White counts still 0.1. Now on gcsf injections to try to boost the count ready to try again next week. I can't have chemo of course, while my bloods are this low. And I'm told they can't delay for too long....but haven't given a time scale. (Any ideas?) Feeling quite calm and looking forward to enjoying this week. Trying not to look any further than each day. Anyone got experience of this and it's success or otherwise? Is there anything I can do to boost my white cells?(although I assume they would have told me if there was)
    Thankyou
    Jane
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 291
    Hi 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
  • janemill Total Reaction Points: 22
    Thankyou all for your care. I heard today that the blood has recovered enough and I have started my 2nd round of chemo. Feeling very relieved having gone through all sorts of emotions. Still feeling well and very thankful. What a roller coaster it is. Onward and upward!
  • SuePSueP Total Reaction Points: 60
    Hi Jane,
    That's brilliant news. Thank you for letting us know. Good luck with the next round.
    Best wishes,
    Sue
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 291
    Keep going Jane, you're heading in the right direction.

    Best wishes,

    Steve
  • RobA Total Reaction Points: 29
    Hi Jane,

    Sorry to hear your news. I have just been through a similar experience. I developed MDS following treatment for AML
  • RobA Total Reaction Points: 29
    Sorry posted the comment too early. What I meant to go on and say was that I relapsed 18 months after my first stem cell transplant. I underwent a series of DLIs as salvage therapy but these didn't work and in May this year I was given the devastating news that the MDS had progressed into AML. I had one cycle of FLAGIda chemotherapy which I was told had a 50:50 chance of achieving a remission. Luckily it worked and I had my second transplant in late August. This was with an unrelated donor (my first transplant had been with a sibling donor). I am now Day 56 post transplant. Things have gone pretty well. I haven't experienced any significant GvHD and will start being weaned off immunosuppression shortly. I must say that i have found recovery much harder this time but this is primarily because I lost 20kg and significant muscle mass post chemotherapy. The weight is coming back on slowly and my fitness and strength are also returning gradually but I still feel I have a long way to go to get back to 'normal'. I hope your chemotherapy also works and that you get the chance of a second transplant. I would be happy to answer any specific questions you might have.

    Best wishes,

    Rob.
  • janemill Total Reaction Points: 22
    Thankyou so much for posting this. I have not up until now been in contact with anyone who has actually had a 2nd transplant. I do hope your progress continues well. I almost certainly would be glad to have the opportunity to ask you about the experience - thank you. At the moment I am waiting to see if this chemo will get me into remission. I feel really well and can't say I am relishing the idea of going through it all again. (Transplant) But of course that is , if I am offered it, my only hope of a long term cure.
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 291
    Rob, many thanks for your post which is just the sort of thing this forum is for and I'm sure is helpful to Jane.

    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
  • janemill Total Reaction Points: 22
    Update
    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
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 291
    Hi 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
  • janemill Total Reaction Points: 22
  • janemill Total Reaction Points: 22
    Update. On Friday I saw my consultant. The chemo (azacitidine) has done the job, but this is short term while deciding the next treatment.
    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?
  • RobA Total Reaction Points: 29
    Hi Jane, my circumstances were slightly different. At the time of diagnosis the NHS had withdrawn funding for 2nd transplants although I had private healthcare which would have covered this. My medical team however felt that DLI offered a better chance of success and at less risk. Unfortunately DLI didn't work for me and my MDS became AML so chemotherapy followed by a second transplant became my only choice. In some respects I do regret not forcing the issue on the 2nd transplant particularly after the first round of DLI failed. I spent 8 months of 2017 in hospital as a result and have been left with a lot of problems with my mouth (I had a gum infection which failed to resolve and have lost three teeth, gum and jaw bone as a result). It's a really difficult call to make and I'm sorry I can't be of more help.

    Best wishes,

    Rob.
  • janemill Total Reaction Points: 22
    Thankyou for replying, Rob. I appreciate it. I have AML which has relapsed. May I ask if your mouth problems were GVHD related? And were they a result of the actual transplant or the DLI treatment you had before? I realise that everyone is different, I am just trying to build up a picture to help me as I think this through. I know the chemo will be intensive, but tend to think an onslaught of chemo for a short period of time might be preferable to a long drawn out life of "less aggressive" chemo. I'm hoping against hope that I can get to a point in my life when I am out the other side of this. Probably a bit optimistic I think.....
  • RobA Total Reaction Points: 29
    No problem Jane, I fully understand where you are coming from unfortunately. My mouth problems stemmed from being neutropenic pre-transplant rather than GvHD post-transplant..

    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.
  • janemill Total Reaction Points: 22
    Update. Sorry Rob for not acknowledging your response....I thought I had. As you will understand, my mind has been in a whirl. I hope you are doing ok. I would be interested to hear an update of your situation.
    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
  • crowberry Total Reaction Points: 14
    Bless you Jane with you all the way and as you say it’s great to hear from Rob and he’s ongoing success , keep in touch , Christine x
  • RobA Total Reaction Points: 29
    Hi Jane,

    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.
  • Mandy_22Mandy_22 Total Reaction Points: 10
    Hi Jane,
    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
  • janemill Total Reaction Points: 22
    Thankyou, Christine, Rob and Mandy for for your support and suggestions. It is quite unnerving this time round. Last time I didn't have time to think really. At least this time I am approaching the transplant from a healthier position. I do trust my doctor and team which is a blessing. I take on board the advice of being as fit as I can, and eating well. Stocking up!! Thanks for responding . How are things with you now Rob? And your son, Christine? And Sean? I often think of you all, and am always pleased to hear updates. Take care
  • crowberry Total Reaction Points: 14
    Hi Jane , thinking of you how are things I am posting on my thread this evening roller coaster again . Let us know when you can how things are I appreciate it’s not priority but sending you love and light and loads of positivity Christine x
  • RobA Total Reaction Points: 29
    Hi Jane, sorry for not posting sooner. I hope things are good with you and that your treatment will be a success. I'm approaching 9 months post-transplant now. Things are going pretty well apart from picking up repeated viral infections over the past three months. I am currently recovering from another bout of RSV, four weeks on and I am still coughing and full of cold. It is intensely irritating for all concerned but I guess in the grand scheme of things not really serious. I am still rather weak in comparison to my pre-transplant self and despite having a monstrous appetite my weight has plateaued at 77kg which is about a stone down on what I used to weigh. But if this is the new normal so be it - I'm lucky to still be here and enjoying life. Keep positive - I sincerely hope that you can beat this.

    Best wishes,

    Rob.
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