Chimerism changes

Hi again, my team wanted some GvHD as it showed the battle was playing out inside my bone marrow. But some just don't have it - everyone is different.

Some folks never see 100% and go onto live well regardless of this.

A DLI is the infusion of lymphocytes, specifically T-cells, from your donor. T-cells are a type of lymphocyte that can cause an immune response. 

I had to have a DLI on day 137 following my first Allo SCT to see if my counts would come up as they were initially in the high 90s and started to drop like a brick, but it made no difference as the SCT had not actually worked and I never had any GvHD :( 

Following my second SCT (11 months later) my counts were in the low 50s but my team left me to see if the Bone Marrow would kick in - it was not playing ball so had a DLI on day 285 - three days later I developed GvHD that was holding the bone marrow back from producing enough neutrophils   so had to have blood transfusions for three - four months then it just kicked back in.

Between Day 85 - 157 skin GvHD so Cyclosporin was continued and slowly reduced. On Day 196 - Cyclosporin was stopped but it was NOT restarted following my DLI on day 285.

19 September 2016 (day 340) I was told I was classed as being in Remission.

It took a further year - 17 September 2017 for my Chimerisim to be Whole Blood Lymphoid and Myeloid Lineages to show 100% Donor.

This is a marathon not a sprint.

I have heard of chimerism dropping after an infection hence we are all so careful. I had mild skin gvhd after DLi. 

Tessa

Hi,

we were told chimerism can go down as well as up but not to worry about it, it was the medical staff’s worry; we were to concentrate on doing things that we could do, correctly, to try to keep daughter well.

hugs xxx 

Hi Mike. Thanks for this post - ‘ marathon not a sprint’ - you are so right.

I found myself on the forum again, seeking guidance.

My sister is DAY 223 post Allo SCT. It’s not worked. She’s still having 1-2 units of blood every week to prop up her HGL. She had a DLI top up 2 months ago now (DAY 167). Waiting for the Chimerism results, due this afternoon.

She never had GvHD. But the doctors have told her there is no point doing a second SCT because they don’t know what has caused her MDS in the first place. 

Couple of questions for you, if you don’t mind.

- Did you end up iron overloaded because of all the transfusions? Did you have to get it removed? How was that?  

- Did you understand what caused your underlying condition - e.g. cancer? Why did they decide to do a second SCT?

I really appreciate the time you take on this forum group. Your advice and encouragement is so valuable. 

Many thanks in advance.

Julie

Hi Julie

So sorry to hear your sister is having a bad time of things..

I can answer one of your questions based upon my own experience.

I had a stem cell transplant for Acute lymphoblastic leukaemia and had to have a lot of blood prior to the transplant  (50+ units). this resulted in high ferritin levels (iron overload) and my counts were around 2500 when the top end of normal are 300 for males (about 150 for females) so I was well and truly loaded.

After the transplant when things had settled down I was told what goes in must come out and I had 4 weekly venesections every four weeks where 500ml of blood was removed. (Just like a blood donation although no one would want mine!). I had these for almost 2 years.

Last time they did a check last December I was about 330 so they said they would wait for a year and see if it came down on its own. If not a couple more venesections will be planned.

I hope this helps and I wish your sister all the best with her ongoing treatment.

Hi Julie  and I am so sorry to hear about your sister and all the uncertainty that is happening - its a hard time for everyone.

Q) Iron Overload - I think Paul1969s answer is great as even although I had 3-4 months of regular transfusions I had no problems with regards to high ferritin levels.

Q) "Did you understand what caused your underlying condition - e.g. cancer? Why did they decide to do a second SCT?"

The short answer is yes.

The 30 month plan was always to use two Allo SCTs. My skin lymphoma was rather rare and as it lived and developed in the skin the challenge was to get my skin clear of the cancer cells and following the SCT they would not regenerate.

Before going into SCT number one my skin was actually in a good condition as I had been getting treatments to control it. But a change in my oral chemotherapy (long story) required this to be reduced and that was when the mass grew very quickly on my forehead. 5 radiotherapy zaps got this under control but as a result my immune system was fragile and my lymph nodes in my neck reacted........ but my skin was still clean.

So the decision was to go for a less demanding conditioning and Allo SCT and crossed our fingers to see if it worked.......... 6 months on it had failed and my skin was showing signs of activity, so I was put away for 11 months R&R to recover and put back on skin treatments.

My second conditioning required 30 radiotherapy session to kill as much of the cancer cells on every area of my skin and then went for the strongest conditioning chemo and again crossed out fingers.

It took 11 months of a lot of downs, GvHD, DLIs blood transfusions to eventually see a positive result.

Keep hanging in and lets look for some positive ways forward. I have been told that should I relapse there are other routes that may be investigated.

((hugs)) all round xx

Thank you Paul - that does help. My sister’s had 65+ units at least, we didn’t keep a detailed count at the beginning. But no blood required today - so that’s a bonus. 

I’ve asked her to get her ferritin level, so we can see how far over she is.

Thanks again

Julie

Thanks Mike, I see that your situation is quite different and much more complex. I am really glad you are on the other side of all those nasty treatments. 

Appreciate the quick reply, and will keep in mind ‘it’s a marathon not a sprint’!

Hi Julie,

there is a medication that you can take to reduce ferritin levels, daughters too are high, but she couldn’t tolerate the medication (caused such bad ‘runs’ that she was losing weight) and so they decided to wait until they caused problems, then would do what Paul has had. As yet they haven’t done this though, they have been dealing with other stuff (low immune levels and sudden infections) 

she too required red cell transfusions for over 2 years post allo though her chimerism was 100%; her blood group refused to change till suddenly it did, virtually overnight! 

Hugs xxx