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Relapse second transplant funding

crowberrycrowberry
in Long-term recovery
I have a couple of threads on here unfortunately my son Bob has relapsed again just short of the year again . With one transplant sibling donor minimal GVHD we would have hoped for a second transplant but because he was 13 days short of the year at first relapse hospital don’t think it’s likley but have applied to NHS England . We have also contact the good hope hospital in LA who have Car T cell trials but obviously cost would be a issue , a trial has been discussed but it’s first human trial and much more of a issue that they are looking to test it’s toxcity . We may fund privately for transplant because Bob wants to at least try . I have questions does anyone have experience of difficulty obtaining funding and what did you do have you funded privately ? Also how long do NHS England take with decision ...,also waiting on trial criteria decision but we think it’s best to look at transplant
So thoughts anyone !
Sorry for the length of post !
Jess212
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Comments

  • Dieseldrinker62Dieseldrinker62
    I didn’t think there was an issue with funding for second transplants any more. A while Bach NHS England had withdrawn their funding for routine second transplants and had introduced criteria that had to be met. A high profile campaign by Anthony Nolan and other organisations forced the government to reverse the decision and second transplants are now fully funded as far as I’m aware. There should be no need for anyone to fund a transplant privately, the costs are huge.

    I’m sure the Anthony Nolan team will be able to clarify and may be able to help with advice.

    Fingers crossed a fully funded solution is found for Bob.

    All the best,

    Steve
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  • crowberrycrowberry
    Hi Steve , the issue with funding falls because he relapsed 13 days before the one year mark . We are hopeful if he gets through treatment that a transplant will be funded if not we may need to self fund . We’ve got a issue re treatment he had neuropathy issues after a previous fldarabine and cytarabine regime so a choice of Amsacrine with etoposide have been offered . It’s Bobs choice Hobson’s choice I feel the latter too are older regimes and are well known to cause cardiac issues ....Anyone know or can offer any words of wisdom ! He’s holding quite well presently on hydroxycarbamide tablets ....so all a bit surreal in truth ,

    Hope your keeping well

    Christine
    Unknown
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  • Jess212Jess212
    I am so sorry about your son. Is it correct that he has already had a transplant and relapsed after that, had DLI and now he has relapsed again? My husband relapsed 4 months post transplant and they said second transplant was not an option. He has been in remission again now for 6 months following flag Ida chemo. We have been told that DLI and trials will be an option if he relapses again which is highly likely. I am not sure if you have to make it one year post transplant with no relapse to be eligible for 2nd transplant. It’s confusing because if you have a relapse post transplant before 12 months you can’t have a 2nd transplant but if you get in to remission again which lasts 12 months does that mean that you then can have a second transplant? If that is the case for your son then 13 days short would be so cruel. But the odds of the second transplant being successful are very low. I’m not sure my husband would want to go through it all again with such poor odds but he might not get the option. The cost of self funding is likely to be in the region of at least £100,000 and a very difficult decision x
    Unknown
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  • crowberrycrowberry
    Hi Jess , sorry to hear of your husbands case it is indeed a cruel disease . Yes my son has relapsed 13 days shy of the one year they used flag Ida to achieve remission then DLI that remission then relapsed earlier this month . He had a sibling donor with he’s transplant and very little if any GVHD and a allergic reaction to cyclosporine so second transplant would be unrelated donor he has lots of matches he’s team have already checked . My son isn’t keen to go through treatment again but is keen to have the opportunity so treatment starts next week flag I think so as he’s responding to chemo and he’s dna issue is still the same he’s disease should respond again it’s just the effects of chemo to worry about ...we hope if he achieves remission nhs England will fund . We are also looking into Car T cell with a centre in America my son apparently has the protein on he’s disease they are seeking to target . As you say money is a issue but I’ll fund if I have to it’s only money after all remortgage crowd funding all worth a shot as long as my son wants to fight this , I hope your husbands remission continues has he had a DLI ?
    Keep in touch and thanks for writing x
    Christine
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  • SuePSueP
    Hi Christine,
    I'm one of the community champions on this forum. I can't offer much advice as I didn't even have the same disease as Bob. However I just wanted to say you have the support and good will of everyone on this forum in your quest for a second transplant. Surely the one year remission mark for a second transplant must have some latitude.
    Please keep us in touch.
    Best wishes,
    Sue
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  • crowberrycrowberry
    Bob my son started treatment 3 rd day today MACE it was felt it offered him the most suitable solution particularly after the CNS issues last time . So far he’s doing ok really nauseous can’t eat not surprising really neutropenic already so fingers crossed for a easy and successful ride thanks for the support , Christine
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  • Dieseldrinker62Dieseldrinker62
    Hi Christine, happy new year and thanks for the update.

    I hope Bobs treatment goes smoothly and that it proves successful. Please keep us updated.

    Best wishes,

    Steve
    crowberry
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  • crowberrycrowberry

    Unfortunately Bob has relapsed for the third time he received DLI about two months ago some slight skin GVHD but obviously not enough. We were chasing funding through IFR for azacidatine to support the DLI as he’s graft matured but news didn’t come through quickly enough . Now after bone marrow we have to see if it’s 30% below in blasts to get it . Absolutely shell shocked he seems so well gaining weight enjoying life it’s so cruel . In to hospital today partial results from bone marrow blasts chromosomes etc looking at trials we were turned down for second transplant but maybe that’s still what he needs but drs are reticent to consider aggressive treatment but he’s only 35 and wants to fight this . Anyone with anything to add please get in touch x

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  • Tom_AnthonyNolanTom_AnthonyNolan

    Hi Christine,

    I am so sorry to hear Bob's news, especially after his treatment sounded as if it was progressing well.

    Other people on this forum who have been through the transplant process may be able to offer advice, and please do keep checking progress and treatment options with Bob's healthcare team.

    Don't forget you can also call us here in the Patient Services team at Anthony Nolan on 0303 303 0303 if you would like to talk, or you can email us on: patientinfo@anthonynolan.org

    All the best,

    Tom

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  • crowberrycrowberry

    Dear Tom , thank you and yes it’s dreadful news we discovered yesterday’s that the blasts even dent are too high now for AZA ironic really because the day he relapsed we received news he could AZA as a preventative measure to maintain he’s remission the IFR result came through after weeks of wrangling despite recent research they still took weeks to decide . These delays have to be stopped they play with lives . My son has targeted therapies now to explore through trial we await he’s genetic presentation following this relapse with hope it’s presentation enables such treatment . We’ve had brilliant support leukaemia care particularly Charlotte Martin who introduced us to another consultant who’s now very much involved in the further possibilities for my son . We live in Cornwall so have to be prepared to travel but of course we will anywhere . Anyone with experience or knowledge of targeted trials please get in touch . He’s BMT grafted slight GVHD but AML simply too aggressive ...

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  • MotherAAMotherAA

    Wishing your son and your family all the best. What a terrible time for you all, made more difficult by the delays and complications with various treatments. So pleased you have found a new consultant and hoping the new possibilities will help.

    crowberry
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  • Jess212Jess212

    Hi Christine,
    So sorry to hear Bob did not get his transplant and is not eligible for AZA. Thought I would mention my husband is on a trial at the Royal Marsden in Surrey for a drug that inhibits the IDH1 marker. We don’t know if it is working or not yet but it is something that has enabled some people to get into remission again and there is part of the trial where they can give the inhibitor in combination with AZA. Martin has IDH1, FLT3-TKD and NPM1 mutations and his consultant in Derby put him forward for the trial from there.
    Wishing you both all the best x

    crowberry
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  • crowberrycrowberry

    Hi Jess , this is really interesting we know of the royal marsden , we are still waiting on the mutations for my son time certainly drags when waiting for these resukts then we can hopefully determine way forward looking at Cardiff or even West Midlands as we’re in Cornwall . I hope your husband is still reasonably well my sons not too bad presently he’s graft is still maintaining but he’s white cells are increasing so hydrocarbimide started today but he’s gaining weight which is a thing for him as he’s light weight and still feels ok . Ironically the day my son relapsed the IFR decision came in to say he could have AZA. Such a play on life’s isn’t it despite research indicating ......let’s hope the precedent now set helps someone else . Keep in touch please .....wishing you much love x

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  • crowberrycrowberry

    My son has now entered a trial we have had to travel some distance the logistics are a bit of a nightmare but it’s worth the effort ...we have our fingers crossed this buys him time and other options ...much love to all Christine

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  • crowberrycrowberry

    I ve thought about whether to post or not but I am afraid my son passed away on the 12 th July . He gave he’s disease the fight if it’s life but eventually it simply proved too aggressive for him we are heartbroken but grateful for all the help support and professional care given to him and me along the way particularly the welsh air ambulance who flew him home to Cornwall from Cardiff once he couldn’t continue with the trial . Much love hope and blessings to all Christine x

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  • Tom_AnthonyNolanTom_AnthonyNolan

    Hi Christine,

    I am so sorry to hear your news about Bob. I can’t imagine what you and your family must be feeling right now.

    Please remember that you can call us here in the Patient Services team on 0303 303 0303 if you would like to talk, or you can email us on: patientinfo@anthonynolan.org

    This service is available to anyone on the Forum if they would like to get in touch.

    I’ve also sent you a direct message Christine, which includes further sources of support, if and when you would like to use them.

    All our very best wishes,

    Tom

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  • Dieseldrinker62Dieseldrinker62

    Oh Christine I’m so sorry to hear of your sad news about Bob.

    We’ve all followed your updates with hope that the treatments would work and a cure could be possible. I can’t begin to imagine how you must all feel with your loss. It’s a sad reminder that these illnesses can be so cruel and that we must continue to support research and awareness.

    My thoughts are with you and your family.

    Steve

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  • SuePSueP
    edited August 2019

    Dear Christine,

    I am so very sorry that Bob has passed away. I know how hard he fought and realise what a great support you were to him.

    Thank you for letting us know. It was very brave of you.

    I am thinking of you all.

    Best wishes,

    Sue

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  • crowberrycrowberry

    Thank you Sue and Steve , as a nurse manager myself I hope in time to be able to translate some of issues that I witnessed throughout Bobs struggle against he’s aggressive disease . I will once again take my place on my county’s end of life board and intend to make a difference ....will always be here to support Anthony Nolan trust x

    Dieseldrinker62jellycat99MotherAA
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  • jellycat99jellycat99

    So sorry to read the news about Bob Christine; thinking of you and your family at what I’m sure is a very sad and difficult time.

    I originally came to the forum in mid July when my (35 yr old) partner was around 100 days post 1st transplant as his recovery had stalled and I was struggling to find the best way to support him. We have since been told that he has relapsed, he has AML with GATA2/MECOM and FLT3 mutations, and have been told that he will not survive. We are awaiting permission to start salvage treatment to hopefully give us some more time and he has commenced the hydroxycarbmide (spelling?) treatment now his white cell count is above 20. All positive thoughts and encouraging words welcome, being a primary carer is so incredibly hard, but I have to stay strong for my man ❤️

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  • Hayley_Anthony Nolan Hayley_Anthony Nolan

    Hello

    Thank you for posting on the forum at such a very difficult time. It is so hard for everyone but carers often feel like they have to hold it together. Its so important that you get support too.

    You are very welcome to call us here in the Patient Services team on 0303 303 0303 if you would like to talk or have any questions or alternatively you can email us on: patientinfo@anthonynolan.org

    Best wishes
    Hayley

    jellycat99
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  • MotherAAMotherAA

    So sorry to hear this sad news. Thank you for letting us know the outcome for your brave Bob. He couldn't have had better support than yours. Be gentle with yourself as you live with your loss, I hope you are supported yourself.

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