Post transplant Anaemia - Any other experiences?

GailC

Following successful treatment for stage 1 non Hodgkins Lymphoma in 2016 I developed Acute Myeloid Leukaemia in May 2017 (we believe the AML was partly triggered by the RCHOP therapy for the NHL) and was treated with one round of induction chemo (DA) and one round of consolidation chemo (high dose cytarabine). Bone marrow biopsies confirmed remission after first round and maintained after second. All blood results returned to normal and by the time I was admitted for STC in August 2017 I was feeling very well and back to my old self. I had a STC from a 10/10 unrelated match (young male donor) with a different blood group - he is A pos and I am O pos - on 24 August. All has gone very well - no evidence of disease in the 100 day bone marrow biopsy and chimerism is at 100%. I have some mild GvHD on my skin and some evidence of it in my liver. The biggest problem though is anaemia- my Hb is dropping to the low 70s every couple of weeks and 5 months post transplant I am still dependent on blood transfusions. My consultant has put me on Rituximab infusions once a week for 4 weeks with a view to getting rid of the GvHD and hopefully the anaemia. There is no evidence that I am destroying red cells but the counts are low. White cells and neutrophils are comfortably in the middle of the normal range and kidney and liver function are still slightly deranged but are improving. Current thinking is that the anaemia is caused by the blood group mismatch.

Has anyone else had a similar experience?

Glad of any thoughts.

Gail

greg777

Hi Gail,
I don’t think my situation was the same as yours but I just wanted to let you know that I struggled with low haemoglobin until about 8 months post-transplant (although I had low platelets and WBC too). The consultant was not sure why and put it down to my body just taking time to sort itself out (I also had quite bad acute GvHD which it is thought was contributing too).
I think sometimes it can just be a long slow road but I hope you get the same developments as me and the counts start to come up with time.
All the best,
Greg

GailC

Thanks Greg. Yes patience is a virtue they tell me!!

beckybram

Hi Gail is it hemolytic anemia? I developed this after transplant and it got to the stage were I was hospitalised and needing almost daily blood transfusions but after they tried alternatives which didn't work they finally tried Rituximab this worked wonders and my red blood cell counts soon began to climb and I haven't had a low red cell level since (touch wood) best wishes becky

GailC

Gosh thanks Becky - that really is encouraging! We don’t think it is haemolytic anaemia as no evidence I am destroying red cells just not hanging on to Hb. But I am halfway through a course of 4 weekly infusions of Rituximab. My consultant tells me he has had success with it in other anaemic patients so terrific to hear of your success story. I am not as debilitated as you were by it and can go 2 weeks between transfusions but nonetheless it is so frustrating not to be able to walk, garden or go to the gym!

Thank you again

Gail

KatieS

Hi Gail,

I've had an auto stem cell transplant in September 2017. All of my blood counts are still low, hb around 80-90 I have a transfusion once a once, platelets around 20 and neutrophils all over the place. They have recently told me they think it is aplastic anaemia caused by the total body irradiation I had. They are trying to confirm it now, I am worried about it.
I was wondering if it was just taking a long time to rise, but perhaps there is another issue there for me.

I hope they sort you out soon, it is disappointing when it takes so long.

Kate.

GailC

I know how frustrating it is Kate. Just debilitating. Medics do have some very clever tools in their kit bags though and lets hope that they can soon find something that will put you right. I was thought too old to undergo total body irradiation so had chemo conditioning only before my allo transplant.

Good luck and everything crossed for you

Gail

Hayley_Anthony Nolan

Hi Gail

Thanks for posting. It is difficult to say what the cause of the anemia would be, it could be the blood group mismatch as the type of mismatch that you have can cause problems with red blood cell engraftment. It could be the amount of treatment you have had and the affect on your bone marrow although you did get a period of no treatment between your NHL and AML. Viruses and infections can sometimes also have this affect on the counts or it could just be that your bone marrow is slow to regenerate after the transplant. What does your consultant think is the cause?

Rituximab would be one of the standard treatments for anemia and in most cases works well however please bear in mind that it can be slow to see a response.

I hope you see an improvement soon and keep in touch.

BW
Hayley

GailC

Thanks Hayley - yes we do think it is to do with the blood group mismatch. We have ruled out infection and viruses - I am pretty healthy otherwise and came through the treatment without infection despite the neutropenia. The last bone marrow biopsy indicated no evidence of disease but was still a bit ‘unhappy’ so my consultant may call for another one to check on red cell engraftment if no improvement soon. I was very encouraged by Becky’s experience with Rituximab though so have my fingers crossed it works for me too.

Thanks again

Gail

GailC

A quick update I had my last of 4 doses of Rituximab 4 weeks ago and very happy to report that my Hb is now climbing steadily without the support of blood transfusions. I am nearly 7 months post transplant and can begin to see light at the end of the tunnel! I am still weak and shaky and fatigued and still anaemic but so much better than I was. Also my blood group is starting to change.

Gail

beckybram

Hi Gail
thats great news that your counts are starting to climb and you are beginning to feeling a bit better, do keep us posted on your progress. My blood group changed too! best wishes becky

GailC

Thanks Becky!

Dieseldrinker62

Hi Gail,

That's great news and encouraging for anyone going through the same thing. Hopefully your counts will continue their progress and return to normal levels soon.

My blood group also changed as a result of my transplant, though without the complications you've had it was much earlier. Together with the 100% chimerism it was a good sign that the graft had taken.

Best wishes for the rest of your recovery,

Steve

GailC

Thanks Steve - yes feeling a lot more positive now!