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I'm pretty good. Still have some GVHD but my specialist says I have the "Goldilocks" amount. My liver is slightly inflamed but most of the symptoms are negligible. It's definitely a slower recovery this time. I never went on this network in 2017 as I felt my story was negative and I didn't want to scare people who were starting the process. At the start of 2020 I did start reaching out to find someone further down the track but no joy. My full story is on the forum as "AML relapse after 4.5 years". I'm glad I wrote to you though because I really wanted to hear some good news stories. The two year mark is a big milestone. Well done.
Thank you. I’ve been trying to find your story on the forum. Where is it please?
Hi Jane, see the link below to Colins post about his experience. I hope this helps.
Thankyou Steve. I am nowhere near as far along as Colin (I will reach my 2- year anniversary 29th this month from my 2nd transplant. I relapsed after only 2 and half years). . I, too feel a bit out on a limb. I’m not saying I am, but it’s hard to find others to understand. There was a gentleman called Rob on this forum sometime back, but after a while I get a bit panicky wondering how it is going with him.....but if I’m honest, there’s part of me also that doesn’t want to know. That sounds really silly, but I suppose I am aware that I am approaching the point that I got to last time.
I am doing really well I think, although there is also a problem with my liver, which is a bit scary if I allow myself to think about it. Anyway, thanks for listening to my ramblings. And for all you do on this forum.
All the best,
My liver still hasn't settled down. It's now only reading about 73 instead of 45. At times it's been 10x the recommended level. I am told it is GVHD and not to worry. I hope your liver problem is something similar
Sorry to hear this Colin. Is it something that affects you? It sounds at least as if the number is coming down, is that right?
My situation is different I think. I am not aware of anything wrong generally, but apparently there are too many “ferritins” in my body and they are collecting around my liver. (The mind boggles!) So our next challenge is trying to get rid of these over a period of time. Generally I keep pretty good health and certainly am trying to appreciate each day, and what I CAN do rather than what I CAN’T. I have not the pressure of having to go to work, as I am almost at retirement age, and for this I am very grateful.
Hi Jane, did you have a lot of blood transfusions during your treatment? I have transfusion induced haemachromotosis as a result of the regular red blood cell transfusions I needed after relapse (I was having at least 4 units a week). My ferritin levels are elevated, 2,800 at last reading. I have been having fortnightly venesections to bring this down but these are on hold at the moment due to Covid. My liver function seems normal though but my platelet count has been persistently low for a while now which does trigger some worry although my chimerism is still 100%. Anyway I'm really pleased to hear you are doing well. Stay positive; we are all having to focus on a new normal snyway. Rob.
Hi Jane and Rob,
I also had high Ferritin levels post transplant, though they were probably about half the level that Rob had. Mine were around 1600 if I remember right and my consultant targeted getting them down to around 800. As Rob says it is due to the high number of transfusions we have during transplant, which increases the level of Ferritin (Iron) in our bloodstream which can cause problems, particularly with the liver.
Like Rob I had regular venesections to remove a unit of blood (which sadly can't be used and gets thrown away) so as your body produces new blood to replace it, the Ferritin levels become diluted and eventually get down to a more acceptable level.
Your attitude of what you can do and not what you can't is a good one Jane. It's a case of adapting your lifestyle to suit what you have been through and accepting what is often referred to as our 'new normal' which as Rob says is becoming a buzz word for other reasons at the moment.
Take care both of you.
Hi Steve and Rob
This is SO good to hear. Thankyou. My levels are currently around 1400 I believe.but are rising. I’ve had one venesection but it made me feel quite rough and my haemoglobin level shot down, so they stopped. After this they started talking about needing to do some other treatment which may have side effects for my vision and hearing. I would want to know much more about that before I went ahead.
However, a couple of days ago I had a telephone consultation and I asked if I could try venesection again, as I would now be more prepared for a difficult response. They were very good about this, and are going to try venesections of half the amount of blood and see if they can tackle it more slowly. I feel better about this option. Whether it will happen prior to lockdown end I don’t know.
As always it is good to hear of people who have “been there, done that, got the T-shirt”!!
Colin, It is good to see your liver function numbers are so much lower than they have been, although as you say, a little higher than they should be. I hope it is not causing you discomfort and that the GVHD is still the “Goldilocks amount” .( I believe it is good to have some). Take care