Please read the house rules and keep this community safe for yourself and others.
TJM
Comments
-
Hello Martin, I have read this thread about your relapse and I'm hoping now you are in a much better place, with your remission status? My hubby has relapsed +151 days out of transplant and he is following in your footsteps he is being admitted today for FLAG IDA chemo then top ups. This is such a difficult battle, hope…
-
Thank you Steve and Greg for your kind words. John goes into hospital today to start chemo, what a battle this all is! Kind regards Tracey
-
Thank you for your detailed reply Greg, yes it is definitely a time to watch and wait biopsy is set for tomorrow just want results back from that. Thank you again for all support Kind regards, Tracey
-
Hello Greg, I've read through this thread and I feel my husband is travelling along a similar road to you with low blood counts, I've spoken to you before and here I am again, John my hubby is on day +144 and all his counts are dropping he is neutropenic with platelets of 44!!! He is having a biopsy this Wednesday to check…
-
Hello, yes we have seen a much better consultant since last week who explained things clearer to us. Yes Haley I will email you so you have our details I would appreciate speaking with the Anthony Nolan nurse at Freeman, Thank you for this Tracey xx
-
Hi Greg Thank you so much for replying, and it's reassuring to know your chimerisim didn't stay at 100% and now yours is on the way back up. When these things happen we always feel that it's just us it's happening to, so it's good to know you've experienced this and have come out the other side as you sound like you are…
-
More questions from me!!!! We have had some initial results back from Johns recent Bone marrow biopsy the second one since transplant, the first one showed 100% chimerisim that was in November, but today we saw a consultant we don't really know, and he started talking about T cells saying it was 97% donor but 92% in bone…
-
Thank you so very much for your reply Greg and Hayley, it's great to have this contact and know there are others who have experienced this. I feel a bit guilty posting on here as I am not the patient but the carer, but for me it's reassuring chatting to others on here and also receiving your valuable knowledge Hayley. I…
-
Hi Greg, Thank you for your response, I have actually read your old posts and followed your story, you seem to be in a much better place now with your recovery, it's so reassuring to read positive outcomes on this roller coaster journey, thanks for your info on low neutrophils it's all such a worry, we seem to live our…
-
Thank you Haley for your quick response, it's the third time he has had cmv virus and taken valganciclovir since his transplant and we are told it effects his counts but I appreciate your reassurance, the consultant today didn't seem concerned at all but I just worry. Thank you again Tracey
-
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…
-
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…
-
Hi Ali this is very interesting, my hubby is +61 days today post transplant (AML) I was going to buy a pointsetta and some holly, we have artificial tree already, thanks for sharing this and good luck to your hubby in his progress. Tracey xx
-
Hello, just an update we have seen the consultant today who blamed the falling counts on the valganciclovir, the cmv is now showing negative so he has stopped that medication. John ( hubby) was given an injection to boost the white cells, im not sure what that is! Consultant was happy with platelet count and didn't seem…
-
Hi Greg, Thanks for your response. Yes we at the hospital tomorrow so we are going to discuss our concerns about the blood count.As I'm Johns carer I put on a positive face but am so thankful for this forum where I can off load my worries. Thanks again, Kind regards Tracey.
-
Thanks Steve for your comments. This week the neutrophils and wcc have dipped again to 1.46 and 1.78!!! The consultant didn't seem concerned and said the vanciclovir he is on for cmv has an effect on the blood count!!! He is getting a bone marrow biopsy next Wednesday and we back at hospital this Thursday for another check…
-
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…
-
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
-
Thank you Haley for your fast response yes he is on valganciclovir for cmv( think that's what the letters are!) consultant said that's improving slowly but still needs that antibiotic for now, I use this forum to let of steam as I don't really want my husband to see I'm worrying im his carer and try to keep him up beat as…
-
Hello Josie I've been reading your comments and can see by the date this was all about a year ago, how are you doing now? I'm hoping you are well ****
-
Hi Hayley, Thank you so much for your reply, we did discuss the pain at hospital and we were told after an examination it's most probably a result of all the meds he is on at the minute, so we were given buscapan to help with the cramps, John ( my hubby) is just so exhausted all the time but after reading the next steps I…
-
Hi Greg, Thanks for your reply, yes we do have a 24 hour phone number and we will definitely mention it tomorrow at hospital. We were told this whole experience was a roller coaster and it certainly is, I'm grateful for these forums so we can express concerns to others who understand. Thanks again.
-
Hi Haley, Thank you so much for your reply even though it's all scary I do agree that it feels better now my husband has now been admitted and we have started the chemo in preparation for transplant this Thursday. Taking one day at a time and love reading this forum with everyone's stories. Thanks for your advice and I…
-
Thank you so much Greg and Steve for your response, it's greatly appreciated. This is a wonderful forum being able to 'chat' to others X going through similar experiences. We are just anxious generally about the whole thing but as you rightly say it must be normal to feel like this, just want to get on with it. Thanks…