Hello!

It looks like you're new here. If you want to get involved, click one of these buttons!

Howdy, Stranger!

It looks like you're new here. If you want to get involved, click one of these buttons!

Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

Low platelets

Hi,

Does anyone know how long it takes to make platelets after SCT? My partner had myeloablative is now day 140+. He is off ciclosporin, but keeps getting cmv levels coming up. This has meant he has been on and off valganciclovir since transplant. He has now been off it for past two weeks, his neutrophils are coming up and lymphocytes, but his platelets are still very low, he needs transfusions three times a week still.

We think it's still the effect of valganciclovir and that his new cells havnt had chance to come up with the cmv treatment suppressing his marrow. Has anyone else had this happen? Looking for some advice. Also has anyone had any treatment to boost the platelet production his consultant has mentioned seeing if they can get some funding for injections to stimulate them?

Many thanks

Best wishes for new year!

Comments

  • Hi Walshy,
    I had problems with low platelets for about 200 days post-transplant. We did a whole variety of tests, but all came back inconclusive. Mine started improving eventually on their own and the low counts were put down to my new marrow struggling with numerous infections - my problem was adenovirus rather than cmv. I was given immunoglobulin at the beginning of October and whilst I can't say for certain, that seemed to be a turning point for me and my counts started to improve. Don't know if it is the same for your husband but if he is struggling with continual infections, it might be worth a shot?
    All the very best,
    Greg
  • Hi my husband is day +93 and his counts are low he keeps getting cmv and is on valganciclovir, consultant said it's that which makes the counts drop, sorry I have no advise I'm so frustrated with this cmv as soon as my hubby gets back on valganciclovir he becomes more ill than he was the little appetite he had is now just about non existent! It's all so worrying! I hope your hubby improves soon and it's good to read your journey Gregg, showing light at the end of this long bumpy tunnel!
    Kind regards Tracey
  • Hi Tracey
    Everyone is different but if it helps, I definitely came out of the other side of some dark places post-transplant. My appetite disappeared, my digestive system gave way for a while and I got very underweight. I couldn't see a way back at times, but it happened. I got on top of infections and things started slowly sorting themselves out. It has taken 3 months but I am now almost back to what I would consider a normal weight for which I am unbelievably thankful. My heart goes out to you as that time was the most horrible in my whole life - but I just wanted to let you know that i am one example of someone who did get better and I am really hoping that this happens for your husband soon.
    All the very best,
    Greg
  • Hi Tracey and Walshy,
    I can't comment about the platelet situation but I can empathise about the light at the end of the tunnel. For my cord blood transplant I was in hospital for five and a half weeks, couldn't eat, uncontrollable diarrhoea, and lost an awful lot of weight. I really didn't care if I lived or died, which was very upsetting for my nearest and dearest. It took a very long time to get back to normal but I'm there now and I realise it was all worth it. The transplant teams are wonderful and never give up on you!

    Let's hope 2017 is a good year for all,
    Sue
  • Hi Greg and Sue, Thanks for your comments it's so reassuring to read other people's experiences with this journey and know we are not alone. We were told it was a marathon not a sprint at the beginning of the stem cell transplant procedure and it really is. It's great to read you are both feeling a lot better it gives us hope. Take care
    Tracey xx
  • Hi,
    I am sorry to hear that some of you are having a difficult time with infections and low counts, but as you can tell from the responses on going infections such as CMV/EBV/Adenovirus can have a negative effect on blood counts and appetite. It is very frustrating for everyone as it can delay recovery and can take a while to break out of the cycle. The most important part to remember is that eventually the cycle can be broken and infections and counts will begin to improve. Both Greg and Sue have given good examples of this. Unfortunately as Tracey has said recovery after a transplant is a marathon and not a sprint so you must keep going and hopefully soon everything will begin to improve.

    Best wishes
    Hayley
Sign In or Register to comment.