First time on here so here goes I ve just read a useful thread Rob A particularly and Steve and a lady who relapsed in the Autumn . My son Bob 34 was diagnosed in Sept 2016 after two chemo and on trial he received a stem cell transplant from his brother my youngest as his sibling donor it’s just me as his father died in 2013 . Unfortunetly just 13 day’s short of his one year post transplant he was found to have relapsed . He’s on day 26 of a chemo regime flag Ida and another two I can’t recall presently but can mention again. He’s had horrendous issues with this chemo he’s mouth is now the worst but he’s improving waiting for neutrophils now finger biting 0-05 today trying not to read much into that . Before he started this chemo the odds given we’re not good 50 to 60 % of remission and only 10 to 20 % of a cure …do these odds improve if he achieves a remission from this chemo and will they consider a second transplant if he does as he just fell short of the one year .Our whole world has been turned up side down again hospital Xmas again his transplant was over Xmas last year it’s so cruel but it’s good to read of people like Rob and his success with a second transplant . I’d also like to hear of anyone exploring further developments immunotherapies etc. Thank you for reading this we’re trying to live in hope not fear and any train of thought would help , Christine
Christine
I’m sorry to hear about the awful time your son and family has been going through. I didn’t relapse, for other reasons I required a second transplant which I underwent two years ago. I do know a patient who I was treated with at the same time and he did relapse, I’m pleased to say he underwent a second transplant and has been well since. There is a nurse who regularly looks at the forum, she will be able to give you more information regards odds improvement.
May I suggest you also write down your questions and take them in to discuss with your son’s doctor, assuming your son has you present during his consultations. I always found the medical team to be incredibly supportive and only too willing to help advise the patient and family. From a personal point of view, having undergone a second transplant to treat AML the chemo regime is horrific that said I was amazed at how well the body bounces back and recovers. I also suffered terribly with my mouth, it was a very tough time emotionally and physically. Your son is young which is a positive and stands him in good stead regards enduring what is ahead of him.
It’s hard to remain positive when bad news just keeps coming, please try to stay positive throughout my treatment for AML I was always amazed at how many success stories there were against all the odds.
Wishing you the best.
Rachel
Hi Christine
Thank you for posting, I am the nurse specialist in patient services. I am very sorry that your son has relapsed just short of a year, it must be very hard to have had another Xmas with him in hospital.
I hope that both Rachel’s support and Rob’s thread will give you hope that he can get back in to remission. He is young and his team obviously feel that he can achieve remission by giving him more treatment. FLAG IDA is a tough regimen but it needs to be to fight the leukaemia so he can then possibly have a second transplant. The first step is getting his disease under control and although I cannot give you statistics, his response to FLAG IDA will be very important in deciding if he can have a second transplant. If he can do this in one cycle then that is even better because its less toxic treatment but he might need more. He will need to be back in to remission before another transplant will be considered.
Right now it must feel never ending but once his counts recover his mouth should improve and everything else should follow. Its important to stay positive and take it a day at a time, the main concern is to get his disease back in to remission. Please stay in touch and you are welcome to give me a ring if you have any other questions, my number is 0207 284 8229.
Best wishes
Hayley
Thank you both for those responses really appreciated we do have a really good relationship with he’s professionals I am actually a nurse myself at times I am not sure if that’s a help or a hindrance !!!
We are presently at 28 days waiting for neutrophils 0-04 today but he’s phlegm in the mouth is building so I am hopeful it’s a sign he’s neutrophils are returning . I am hopeful this tough regime brings remission I believe they want to consider placing his brothers cells back in buying time for the second transplant hopefully . It helps hearing from others particularly those with successful conclusions .
Hi Christine,
Welcome to the forum and I’m glad to hear that you’ve found the threads regarding relapse and subsequent treatment useful.
When something like that happens it must be useful to know that it is something that happens to others, possibly more than we realise and that there is a well established course of treatment to deal with relapse. It sounds like it’s not an easy process to go thrfrom what Rachel and Hayley have said but as Hayley suggests your son is relatively young and if he has recovered some strength after his first transplant he will be strong enough to get through it. Hopefully the periods he is feeling unwell and having difficulties such as his mouth being sore will be short and he can recover between cycles of treatment.
Thank you for posting and please keep us updated as your son progresses. As you’ve seen yourself, sharing our experiences on here helps others who can read through the posts and find support just as you have.
Best wishes,
Steve
Thank you Steve , it helps knowing I can share on here I didn’t use this forum last time and really should have done so I will keep posting updates ,
Christine
We still have no neutrophils well 00-2 on day 29 of flag Ida following my sons relapse getting really jumpy . Talk of checking bone marrow in about a week what happens if the neutrophils don’t return ? Sorry these questions just jump around the head you’d think you’d get used to it wouldn’t you , After previous chemo trial then transplant …
Hi Christine
Thank you for the update. It will be a worry for you and your son that his counts are slow in recovering but he has had a lot of treatment, his bone marrow has had a lot to deal with and this can slow down count recovery. It is normal for the team to suggest a BM if the counts have not recovered after about a month from chemo, this is just to see what is going on and it might just show that everything is OK but slow. Its best to discuss what the plan would be if his counts did not recover, if he has no disease they might go straight in to a 2nd transplant but this decision would really be lead by his consultant. I would definitely suggest that you discuss it with them so at least you know.
Best wishes
Hayley
Hi Christine,
I’m really sorry to hear about your son’s relapse. It must be a desperately worrying time for you all. The FLAGIda regime was tough to endure but hopefully your son is now through the worst of it. I remember that my medical team were convinced that there would be very limited neutrophil recovery post chemotherapy and were more interested in my bone marrow status (I had a biopsy around a month after the chemo); my neutrophils did slowly come back up to and plateau at 0.4-0.5 however. I was given similar statistics to your son in terms of the chemotherapy working, and then a 33% chance of long terms cure following a 2nd transplant. At the end of the day these are only general statistics and not specific to the individual so try and ensure that you all stay positive. It is very difficult at times particularly when the bad news keeps coming and there seems to be no light at the end of the tunnel but I’m convinced that a positive mindset was a major factor in getting me this far through the journey. Please keep us updated with your son’s progress and post any questions that arise along the way.
Best wishes,
Rob.
Thank you Hayley and Rob for those comments my son Bob has experienced extreme difficulties with the mouth jaw after his chemo saw max facial yesterday has exercises and is expected to improve nutrition has been a major issue . Re neutrophils still hovering around 0-05 bone marrow being taken today so everything’s crossed he’s counts on other things are holding only needs occasional top ups of platelets and RBC so let’s see what today brings .
Much love Christine
A simple follow up on this thread my son Bob has been discharged he’s recovery from the flag Ida going well neutrophils still slow now sat at 0-20 so getting there at day 36 . The bone marrow taken last week was empty some slight granulation but not enough to call . Further bone marrow planned next Tuesday hoping fingers crossed for a remission and 5%or less blasts leukaemia cells - Only then will he be considered able to continue with treatment we’ve been told if so DLI next so scary don’t want to consider the alternative . He’s eating well now mouth recovered weight increasing no pain now so would l8e to think these are good signs .
Rob if you read this how far past your first transplant we’re you when you relapsed and after your flag Ida what % did you achieve to get into remission. Would appreciate any other communication on this . Whatever happens we will be speaking with his transplant coordinators . Spoke with Hayley today from Anthony Nolan thank you so much Hayley appreciated your contribution x
Hi Christine,
Thanks for the update. It sounds like things are moving in the right direction which must be encouraging for you all. I’m glad to hear that your son is getting his appetite back and gaining some weight. If he can regain some strength and energy it will help him going into the next stage.
Please keep the updates coming as I’m sure there are a lot of people reading this and rooting for your son.
Best wishes,
Steve
Hi Christine, that all sounds encouraging. Fingers crossed the DLI works. I was 18 months post transplant when I relapsed but it took me a long time to reach 100% chimerism (12 months) and I had residual disease up until this point. At the point of diagnosis the NHS weren’t funding second transplants but I do have very comprehensive medical insurance which would have covered this. My medical team however felt that DLI offered a better chance of success and with less risk. Unfortunately this didn’t prove to be the case. In my terms of my bone marrow status post FLAG IDA I am pretty sure there were no blasts. Hope that is of some use.
Best wishes,
Rob.
Thanks Rob and Steve , your support is most welcome not long returned from the hospital further bone marrow had been planned today . In reality we had much more favourable news the result from the bone marrow a about ten days ago has now proved to be favourable . There is a positive element now bone marrow postponed until next week now neutrophils climbing 0-38 so getting there . We’ve now been told the transplant unit wants to feed a marrow so to speak that has a fuller content …so all good. The journey continues but feeling positive today …
Much love Christine
Further news Bobs ( my son ) latest bone marrow show no leukaemia tentatively delighted onward and upward …Chimerism awaited to display information from his first sibling donor then consideration of the future DLI then perhaps another transplant but he’s achieved the remission after all !!!
Thanks everyone for your support the fight goes on x
Hi Christine, that’s great news. I’m so glad to hear the treatment is working and fingers crossed it continues. Getting into remission is a good step along the way and let’s hope the next steps go smoothly.
Please keep us updated and as always we are here to support you.
Best wishes,
Steve
Official remission absolutely delighted consultants say it has amazed them how well he’s done . Just started another consolidation chemo cytarabin was going to be another flag Ida but he’s had some issues with peripheral neurophy lower limbs numb no pain so they thought it best to change . He’s continuing to gain weight and counts were really good . On to DLI following this chemo so hepeful this chemo is kinder to him then the flag Ida although we are so grateful it got him into remission . Onward and upward love to all x
Forgot to mention he’s still 100% donor he’s chimerism came back x
Hi Christine,
That is brilliant news about your son, you must be extremely happy with how things are going now! Definitely onward and upward for you all.
Sending our best wishes to you all.
Mandy
Hi Christine, great news indeed. Fingers crossed for a smooth remainder to the treatment and recovery.
Best wishes,
Steve