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?
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 At the time of diagnosis the NHS had withdrawn funding for 2nd transplants although I had private healthcare which would have covered this.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.
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…
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!
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
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.
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
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
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
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.
Thank you Rob. As you can imagine I follow your posts with great interest. I am very glad for you that you are well enough to enjoy life, albeit within limitations. It’s amazing how we adapt to new situations. Update for you all. It is actually happening for me. All tests done. Hickman line in ready. Admitted hopefully Friday, treatment starting Saturday. 12 days intensive chemo then the 2nd transplant. Am busy packing! I feel really well at the moment, (which is in itself frustrating!) so it means I am starting out from a better health position than last time…but I am certainly not looking forward to it. I know when it all kicks off, I will just get on with it as best I can (no other choice really!!) I feel very fortunate to have this opportunity…and hopefully will be in a position to give you some news soon. I hope to continue to follow your progress as and when I can and I’ll be thinking of you all.
All the best
Jane
Hi Jane, just want to wish you the very best of luck for your 2nd transplant journey,
Like you say you already know things will be tough but you absolutely sound like a real strong lady and I’m sure you will give it your best shot and come out the other end fighting!
Sending all our love xx
Hi Jane , if you get chance or the inclination to read this I am keeping everything crossed for a good outcome for you ,hope your doing well lots of love Christine
Thankyou both. I am gradually emerging…I am out of the hospital room, being looked after by Derek in one of the flats on Addenbrookes site.
I am very weak of course…not quite stable enough to go home, especially as I need to come back 3 times a week (4-hour round trip)
But …Yes, still fighting. Feeling very blessed to have this 2nd opportunity. Very glad the first bit is over, I must say.
I am very tired. I have thought of you often and look forward to hearing your news on another occasion.
Much love and thanks x
It’s good to hear from you and glad that things are stable at the moment. I’ve got my fingers crossed that things keep progressing smoothly and that you can go home before too long.
Stay well and please keep us updated when you feel up to it.
Hi Jane,
Thinking of you lots and wishing you all the very best for a steady recovery. Hopefully it won’t be too long before you can making your way home. Keep going and we are keeping everything crossed for you. Sending lots of love
Mandy
Whoa what great news out the other side hope this continues Jane I ve been thinking about you every day it’s so good to hear your recovering well much love and you’ll get home we have long trips to our transplant centre too but ours can be broken up at times with our local hospital but it does take more time and energy doesn’t it …hope your home soon Christine x