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Day 63

Hi, my partner had stem cell ( myeloablative) transplant. He is now day 63 post it. He had ganciclovir started for cmv reactivation prophylactically. His counts have been dropping this past week or so and his renal function has been worsening.
He is severely neutropenic, he has to have platelets transfused every few days. He had a bone marrow biopsy last week to check for relapse. The flow has come back clear bit we are still waiting for some more results to come through this week.

We are both very anxious, worried, the medical team seem to think it's all down to the ganciclovir. We are waiting for the cmv to be negative before they can stop the ganciclovir. I have been giving his gcsf to help but this week the neutrophils are not coming up with it. Can this happen just with ganciclovir? I am worried if the graft is not working now?

His weight has also dropped in the past week as he has been feeling more nauseous and off his food too. Any tips for helping with this? I am trying chocolate, high calorie shakes but limited by nausea still. He is taking regular antiemetics (3 different types).

I just feel we are struggling to win this week!

Best Answer

  • TJMTJM
    Answer ✓
    Hello, I've been reading your comments about your partner and am wondering how is he doing now? My partner is on day 44 out of stem cell transplant for AML, his blood counts have started to drop, its a rocky road this journey and I'm just wondering how you are both doing ? X

Answers

  • Hi there,

    If it's any sort of encouragement I can honestly say I was probably similar at the same stage. I didn't have CMV but the nausea and weightloss together with the need for blood and platelet transfusions is all too familiar. I also had the milkshakes which helped when I could keep them down so please persevere with them as they do help. I found soups tolerable as well though they will probably taste odd. I seem to remember getting some nutritional soups from the hospital as an alternative to the shakes.

    If the results of the bone marrow biopsy are clear then it is possibly just a blip which might be related to the CMV and once over that hurdle his recovery will hopefully restart and his counts start to climb again. It sounds like the medical team have an idea as to what is causing this and have plans that they can try to get his recovery back on track.

    I know its easy for me to say stay positive when you are obviously worried, but we do all have hiccups along the way but we do get over them so hopefully that will give you some assurance.

    I hope this helps but please keep us informed as to how he gets along.

    All the best,

    Steve
  • Hi,
    I am the nurse specialist in the Anthony Nolan patient experience team, I am sorry that your partner is having such a difficult time.

    Steve has given you good advice from his own personal experience regarding diet and nutrition. It can feel like an uphill battle and improvement in weight can be slow but its vital that he perseveres. Maintaining his weight rather than losing is a good goal to start with and then you can build upon that. I cannot emphasis enough the importance of nutrition in recovery post transplant, its the key to keeping up his strength, especially when he is going through tough times. You sound like you are doing all the right things and I am sure the hospital dieticians are involved and are offering their expertise too, so just keep going with what you are doing.

    With regard to his CMV, its a common infection after transplant and is treated early so it does not become a serious problem. As your partner is experiencing treatment can be tough to tolerate with side effects that leave patients feeling nauseous, tired and generally feeling unwell. It is well known that Gangciclovir affects the blood counts and can irritate the kidneys, its always a balancing act of giving the appropriate treatment whilst ensuring that the counts are not too badly affected. I understand your concerns but its not uncommon to need GCSF and blood product support when on this treatment. The preliminary results of the bone marrow should give you reassurance that his disease is still in remission but maybe also ask about his chimerism as this will give you a much better idea of how the graft is doing. In my experience although its a tough period if you get CMV reactivation it does get better and the effects improve once the treatment has stopped. Until then he is in the best place possible, with a team that understand what is going on and can ensure that he is protected whilst he has the treatment he needs.

    The hardest part of a transplant is the months of recovery and the ups and downs that you all have to endure to get your lives back, but you must remember that you have both come this far, you are strong and you will get through this.

    Please keep us updated on his progress

    Best wishes
    Hayley

  • Thank you both, they are now bringing him in to hospital thinks he might have acute gvhd of the gut so will be In hospital for fluids and further investigations. This might explain the weight loss and vomiting he has been having. I will ask about his chimerism too. Hopefully he will start to feel better soon.
  • Hello, he is doing ok. He is now day 104. His counts are still very low because he has been out on valganciclovir for preventing the cmv reactivation. This means he is having to have blood and platelets still every few days. He is still at home and putting weight on eating well. They have started to reduce his ciclosporin so I think this is helping him to feel better also.

    He is having gcsf to help his neutrophils for now. They have only just stopped the valganciclovir this week. This will help his counts to improve we are hoping. He had to have his bone marrow slightly early because his counts dropped to make sure it wasn't because of relapse, thankfully it wasn't, they also said if his don't improve they might have to give him stem cell top up.

    Is your partner at home now? How is he feeling? It is an up and down rollercoaster journey! I just want to fast forward to next year hopefully things will be a lot better by then. It's very tough but things will get better because they have to. Leah ****
  • TJMTJM
    edited November 2016
    Hello, oh that sounds more positive for you and you are past the 100 days milestone, it's definitely a long rocky road, my partner is on valganciclovir for cmv so we hoping that's the reason for his fallen blood counts, he is getting a bone marrow biopsy on 23rd Nov to see what's happening! Take care and thanks for sharing your journey with this! Tracey xx
  • HI again, the good result from the bone marrow biopsy should be encouraging as it's reassuring to know that he's still clear. My recovery was also slow and I had blood and platelets for some time after my transplant. You will also see a number of threads on here about stem cell top ups which may give you some assurance that this is a common procedure and could give your partners system a jump start to get his counts climbing again.

    The nausea and sickness does last quite a while and it took me some time to get back to feeling normal and being able to eat properly. It doesn't help that your taste is affected and foods you used to love taste foul after transplant. Thankfully taste does return to normal and his appetite will get better too.

    Please keep us up to date as things progress.

    All the best,

    Steve
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