Platelets gradually droppjng
Please I need some positive advice. My husband is nearly at his 100 days post 2nd transplant for AML. He has been suffering from GVHD of the liver he’s been going to clinic 3 times a week and was told today that his platelets have been slowing going down and from Wednesday at 500,000 are now 430,000. Please tell me this isn’t a relapse so early. I’m feeling sick to my stomach with worry.
What have the doctors said? I think my platelets are low too but I'm not worried myself.
Can you talk to the doctors and ask them about it and tell them your fears?
Sorry I can't be of any help, I just want you to know we're here for you in our hearts. You did well to write. Keep us informed. It's a terrible time for you all, I'm sorry for you.
As Helen has said the best thing is probably to speak to your husbands medical team. Your husband is approaching 100 days but in reality that is still early and the bone marrow is still recovering at this stage so there may be dips in counts for one reason or another.
When I had my transplant I thought everything would be OK after the 100 day milestone but there is still a long way to go. I'll be honest that I paid no attention to my counts for platelets etc, and left that all to the doctors to decide. I was probably still having transfusions of blood and platelets around the same time if things were low, but I don't even remember the doctors telling me my counts. If they told me I needed a transfusion I took their word for it and didn't question the need.
I think the best advice is to ask your husbands medical team what the drop in the counts mean and why it might have happened. Try not to think the worst as these things can and do happen.
Any news? How's he doing? Hope he's stable.
Helen I’m sorry I haven’t replied sooner! He’s doing okay his kidneys are up and down but apart from that hes down to one day a week for clinic. The only worry I have is the doctors have told us that they do not do bone marrow aspirates anymore. However, he is 100% donor and levels are up and down but they don’t believe there is any reason to suggest the transplant hasn’t worked. The consultant did however say that if they were to do a bmb and found a small or a lot of cancer they couldn’t do anymore 💔 (apparently he doesn’t have any mutations to use as markers?) This is something that we just can’t deal with especially myself as it’s knowing that if it comes back that’s it no more options. I know he’s struggling but won’t talk to anyone and I’m just a nervous wreck ready for a breakdown! I managed the first transplant as I was younger and I suppose the not knowing what could happen. Second time around it’s very difficult as he’s my world and I couldn’t go in without him. I try to keep busy. And block the dark thoughts out but it’s hard when everyone else is getting on with their lives with their children and we have nothing! No children and living on a knifes edge for the rest of our lives. I know it’s not me that’s I’ll but I think I’m struggling more than him and it’s beginning to take its toll. Sorry for the long post I just needed to vent. Hope everyone else is doing well x
Really sorry to hear this. It must be triggering the traumas from first time around. I don't know what to say here. I can only send you a big hug.
Try to get through each day as it comes, stay in the now. I can't imagine how you're coping. It's really strong of you to share here.
Do you have good friends?
Love to you both,