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engraftment

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kattyk Total Reaction Points: 1
My son is currently at day +17 and yet to show signs of engraftment
He has had an infection which he is recovering from
Consultants say they are not concerned at this stage but they will be if there is still no signs this time next week
Such a worrying and anxious time !
Anyone been in a similar position ?
Kind Regards to all

Best Answer

  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 297
    Answer ✓
    Hi Katty,

    It can vary as to how long engraftment can take as we are all different and I guess if your son has had an infection that may have delayed things a little. I understand how worrying it will be for you but try and take the lead from your sons consultants if they are still confident at this stage.

    I hope his counts start to improve soon and please keep us informed how he gets on.

    All the best,

    Steve

Answers

  • Rachelj01 Total Reaction Points: 64
    Katty

    I'm sorry to hear about how anxious a time your son is enduring post transplant. I had to undergo two transplants, the first graft did not take however it was later than 17+ days this occurred. 17+ days is still very early, there is no evidence to suggest the graft hasn't taken and which also means there is every reason to think it has taken.

    A week is a long time, so soon after a transplant, by this time next week your sons test results could be very different.

    As mentioned my first SCT did not take, I would like to take this opportunity to stress that it is extremely rare this occurs. Your son's medical team would have advised that there is a very small chance of this and when it does happen, I can confirm the medical team act very swiftly to access why did not work and start the process of preparing for a second transplant.

    I know it's hard to remain positive when you have blow, after blow, after blow. Nonetheless a week really is a long time and the consultants will be doing everything to make sure the graft is successful.

    Best Wishes

    Rachel
  • SuePSueP Total Reaction Points: 60
    Hi Katty,

    It's four years since my transplant so it's difficult to remember exact dates but we think it took at least two weeks before engraftment occurred. Even then, the neutrophil count only rose very slowly and I had to be reassured that all was well. I also suspect the infection could have delayed everything. Beforehand, as Rachel says, I was told it was very rare for the transplant not to take. I will be thinking of you and your son, as I know everyone on the forum will be. Please keep us in touch with your son's progress.

    With very best wishes,
    Sue
  • kattyk Total Reaction Points: 1
    Thanks so much everyone for taking time to reassure me.
    I'm thrilled to say that on day +17 his count was 0.1 and today his count is 0.2 he looks and feels so much better and has had a fry up two days running for breakfast !
    It has certainly brightened up this anxious time.
  • Rachelj01 Total Reaction Points: 64
    Katty,

    That is wonderful news, keeping everything crossed for more fry ups and count increases.

    Rachel
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 297
    Hi Katty,

    That is great news, hopefully you can watch those counts increase, but bear in mind it will be slowly and try not to get too alarmed if they drop off as he recovers as it can happen. It's great news that he's back to fry ups too as that will help him get some strength back and maintain some weight.

    Sending best wishes for a smooth recovery.

    Steve
  • SuePSueP Total Reaction Points: 60
    Hi Katty,

    I am so delighted by your news. Both the neutrophils and the fry ups are excellent progress. As Dieseldrinker says, it may take time to achieve decent counts so be patient.

    I’m glad the forum helped you in a small way. Thank you so much for letting us know and please continue to keep us in touch.
    With very best wishes,
    Sue
  • kattyk Total Reaction Points: 1
    Hi everyone
    Well the earlier suspicions of transplant not engrafting have been confirmed
    The transplant has failed. His white cell count only rises in response to GCSF and he is dependant on blood and platelet transfusion. A second transplant is scheduled for end of april (approx.). This one will use the same donor , but different conditioning.
    He's been home for three weeks and is actually feeling reasonably well. Time to build him up now , ready to start again. I know some have mentioned they have been through two transplants. Trying to stay positive , yet feeling defeated and so blo#dy angry I have to watch my boy go through this again !
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 297
    Hi Katty,

    I'm sorry to hear that the response hasn't continued, but unfortunately it does happen sometimes. You will see that there are quite a few threads on here with people in a similar situation who are also progressing towards either a second transplant or a stem cell top up. Hopefully your son is still in remission which should mean that the conditioning he receives pre-transplant should be a lot less aggressive and may allow him to go into the second transplant feeling a little better.

    I hope he can use the time beforehand to build up his strength and recover a little ready for the second transplant. It must be so tough seeing him go through this, I think it is sometimes harder for the families than the patients.

    Please keep us up to date with how he's getting along and for support as you need it. I hope the second transplant gives him the jump start his systems need.

    Best wishes,

    Steve
  • kattyk Total Reaction Points: 1
    Thanks Steve
    I will look through the threads.
    My boy doesn't have cancer he has a rare form of bone marrow failure (Diamond Blackfan Anaemia) which presented about four years ago. Nonetheless it is treated transplant wise in a similar way to some leukaemia's. Transplant was decided when the disease became so life threatening it put him in critical care on life support.
    His medical team seem very hopeful that using different conditioning treatment will work, we have also received the best news that his original donor is willing to donate again. What a very lovely man he must be !
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