Day +21 and WBC already dropping
hi there, my husband has had a terrible time since his transplant 21 days ago. His background is he has Non-Hodgkins Lymphoma, diagnosed in May 2020, which was chemo-resistant and he relapsed twice before but eventually getting into remission in November through new medication. A week after the transplant, he ended up in ITU with heart failure (he's only 51, but they think a reaction to the chemo) and although he thankfully pulled through, and is back on the ward, his neutrophils have now dropped from 4 (with GCSF) last week, to 0.2 today. They had stopped the GCSF a few days ago and since then they have plummeted. The transplant nurse said they are concerned that there is early graft rejection as it's unusual to see such a sudden drop, although she said it could also be due to infection - although seems she was erring more towards graft rejection. They have sent off chimerism test and will know in a couple of days what the results of this are. I am just so worried. She said they can get some more donor cells, but this could take weeks, and they don't know if he'll be able to have further chemo. She said it all depends on what the chimerism is. Has anyone experienced this before. I don't know how much more anxiety and uncertainty I can take! Thank you.
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Sorry, I meant to add, they re-started the GCSF a few days ago and the nurse said she would have expected the donor cells to have responded and picked up on the neutrophils by now, not dropped further.
Hi @Moomee - Claire here from the Patient Services team.
I’m sorry to hear your husband is going through this, and about the anxiety you are experiencing at this difficult time. I understand you have now spoken to our Lead Nurse, and I’m glad she was able to help.
I also wanted to let you know about our free Telephone Emotional Support Service, in case this is helpful to either you or your husband – you can find out more here: www.anthonynolan.org/tess
If we can help further, please don’t hesitate to get back in touch either via our Helpline (0303 303 0303, Mon-Fri, 9-5) or by emailing [email protected].
All the best,
Claire
Hello Moomee
My name is Michelle and I am an online community champion on the forum here to support patients and families through their journeys.
I'm so sorry to hear of the difficult time your husband is having and the challenges you facing around it all. Your anxiety is very valid and I wanted to share abit of my story with you.
Firstly, I am pleased to read that you have had some contact already with Anthony Nolan Lead Nurses.
I was diagnosed Non Hodgkin lymphoma and Histiocytosis in 2016 and kept relapsing. In 2019 I had my bone marrow transplant and 2 weeks later the same thing happened to me that your seeing in your husband. I was so unwell I don't remember much other than being told it had failed. The details are full of gaps but essentially my Neutrophils never climbed back up even with the GCSF and supportive medicines. I was told that I had graft rejection and that they needed to get my original donor to donate again. Unfortunately that couldn't be arranged so they started the search for another donor to retrieve more cells. I was made aware of the graft faliure/rejection in the January of 2019 and it took until May to find and arrange more unrelated donor cells.
The supportive medicines kept me alive and consisted of alot of immune suppression drugs and steroids as chemotherapy wasn't possible. I become more dependent on blood and platelet transfusions too, but those things combined meant I was able to sustain life to get the new cells. The new cells grafted very well and 3 weeks later I was well enough to be discharged.
The team kept a very close eye on me throughout, multiple times a day they reviewed my case. Which, I am confident is the situation in all circumstance like this.
I truly hope they find a way forward for your husband and that he is able to receive the new donor cells as soon as possible.
We are always here on the forum for you to reach out too as is the emotional support team, as mentioned by Claire.
Best wishes,
Michelle
That's amazing, what a journey you have had. I am concerned that without neutrophils he will end up with infection after infection, as this has happened a couple of times before and he has been close to the edge each time. This time he is so much weaker. How did you get on for so long with little immune system? I've always been told that without neutrophils and a working bone marrow, he wouldn't survive. however, I do know there were a couple of other 9/10 matches that were found and even the same donor might be able to donate (I haven't heard otherwise). Was it successful because it was a new donor? And if he needs chemotherapy to wipe his old immune system again, I've been told he may not be able to have it as he reacted badly this time, and ended up in ITU. I can hear that you are saying there may be alternatives, which is reassuring. Have I got that right?
Thank you so much for replying. It's really hard to keep going.
Actually, previous to this, it was the lymphoma stopping his bone marrow from working - maybe this is a slightly different context?
With low Neutrophils comes netutropenic sepsis which is a whole body response to a generalised or specific infection. There is always risk of that being fatal and I can hear that while on GCSF your husband has had higher neutrophil levels but without there is nothing. Which is a huge concern.
When my stem cells where rejected I had periods of gcsf on and off because I was Informed that it was not a long term solution. This is when they introduced steroids to control any Ingections or viruses I may have picked up or at risk off. Steroids and the immune suppression such as cyclosporin was used to control the immune system. Although, technically i had no immune system. Those drugs acted as a temporary one for me.
It's hard to be definitive about whether it was solely because of it being a different donor. My original donor was 10 out of 10, I believe and second donor was a 9 out of 10.
From my experience i didn't have to have more chemotherapy before receiving more cells. Every case is different but iv never heard of a second round of conditioning unless it's months after that the rejection occurs. Alternatives such as the supportive drug treatments can be used, dependent on your husbands circumstances. Your husbands team will have seen similar situations and medicine, in regards to stem cell transplant has advanced the care of those in such positions.
It's a confusing overwhelming and scary time. Please continue to reach out any of us here at Anthony Nolan should you need the support
Best wishes,
Michelle
Thanks so much. It does give me some hope. To be honest, I'm definitely thinking the worst, as we only ever get bad news. But I don't know yet why the neutrophils have dropped. It might be that they are fighting infection somewhere. But in a way, it's better to be prepared. It's good to know that there are things they can do to build him up. Thanks again.
Hi Moomee,
Like Michelle I'm one of the online community champions here and am a stem cell transplantee myself, though my transplant was much more straight forward than Michelle's and your husband.
I'm sorry to hear about the problems your husband is having, but hopefully Michelle's posts have given you some hope that things can turn out right. I know it will feel like everything is stacked against you at the moment, but graft failures do happen and there are solutions that can turn things around.
As far as risk of infection is concerned I guess your husband is still on the transplant unit at the moment, which means he will be very well protected from infection. The environment is designed to be extra clean and he will be monitored closely for any sign of infection which can be treated straight away. Those taking care of him will be taking every precaution to make sure that he doesn't pick up any infections and it's important that if you are visiting him, you are healthy with no coughs or colds. Throughout my treatment in the lead up to my transplant I had next to no immune system and I spent much of my time on the transplant unit before my transplant as a precaution to prevent infection.
As you note, one possible reason for the drop is that he has an infection that the neutrophils are fighting, so things may pick up on their own when he gets over that. If the graft has indeed failed, there are lots of options open to his medical team, including stem cell top ups or a second transplant, possibly from an alternative donor.
As hard as it feels, please try to stay positive and keep your husbands spirits up. We are here to support you and as you have already done, the Anthony Nolan team can be contacted directly for support and advice. Please keep us updated and use us for support as you need. As Michelle's posts have demonstrated, you are not alone in going through this and we will help you and your husband get through it.
All the best,
Steve
Thank you. The nurse said that he may have picked up an infection from his gut bacteria. Although he hasn't spiked a temperature for a couple of days. I am just praying it's an infection causing the drop, but my instinct tell me something else is going on. This is such familiar territory, his bone marrow never bounced back from any treatment, even when he was completely free of lymphoma, but now, these aren't even supposed to be his cells, and it's still no bouncing back! It's hard to take as we were so hopeful that this would finally work, so it feels difficult to think it isn't.