Post stem cell transplant

Hi Andra and a warm welcome to this corner of the Community.

I am Mike and I help out around our various Blood Cancer groups as well as this group.

I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different from your mum's I do appreciate the challenges of this journey rather well.

I have actually had 2 Allo (donour) SCTs..... the first was in June 2014 then the second in Oct 2015...... it's a long story but you can make a cuppa and See my story through the link on the left.

What your mum is experiencing is indeed normal and happened to me after both my Allo SCTs......so yes it is expected due to your mum's old immune system and here new Stem Cells having a fight........

This normally happens once her Immunosuppressants (Cyclosporin ?) is started to be reduced. Immunosuppressants are used to keep her own immune system under control to allow the new cells to grow...... but eventually the old and new do have to meet each other and this oftens results in her chimerism (%) going all over the place.

She will be have what is called a Donor Lymphocyte infusion (DLI). I had 2 after my first Allo and I think 4 after my second.

It took longer to get a line in my arm than it took for the DLI to go in as the most I ever got at any one time was 30mls.....a tablespoon.

The infusion helps to wake the 'battle' up and encourages her new cells to take control........ the only thing that may happen after a DLI is GvHD may well raise its head....... but most consultant will say that this is a good thing as it shows the new immune system is fighting it's corner...... I had no GvHD after my first Allo and it failed within 6 months. I had some GvHD after my second Allo but have had no relapse.

I will also say that it took 23 months after my second Allo SCT for my Whole Blood Lymphoid and Myeloid Lineages to be at 100% Donor.

Happy to answer any questions ((hugs))

Hi,

thank you so much for getting back to me, it means a lot as I now feel a lot more reassured.

So the consultant has made a plan to reduce her cyclosporin from 75mg to 50mg and she is to take one pill a day for a week and then stop it completely. She will then have some more stem cells given to her. I see you stated you’ve had multiple doses, does this only happen if the infusion doesn’t work? Or are they given as a precaution? 
Also she hasn’t had any GVHD symptoms but the consultant said it would be good if she got the mild version as this shows the transplant is working. 
Im super nervous for her as she has already gone through a lot and I just want her to be healthy again. 

Many thanks for taking the time to get back to me, it’s really appreciated.

Sorry for not getting back to you sooner but l took my wife out for lunch…… life can return to normal.

Multiple DLIs are often given based on the regular chimerism blood tests (the test that identifies the mix between her stem cells and her donors stem cells)…. So if there is a downward trend this will trigger DLIs….. but if the % is stable they tend to wait to see if the graft does it’s own fighting without help.

DLI(s) are given to cause an immune response which can push the chimerism back up to an ‘acceptable’ level….. I have talked with many people who never reach a 100% donor graft but get on with life regardless.

DLI is slightly different from getting Stem Cells as the DLI is a high level of the Donor Lymphocytes and this is all that is needed to weaken up a slow growing graft.

As I said it took over 23 months for my graft to fully grow……. Just remember that your mum’s immune system is a good (or not) as a new born babies is……. This is not a sprint but truly a marathon. This us taken from my time line notes following my second Allo SCT ((hugs))

Days + 85 to + 157 skin GvHD so Cyclosporin was continued and slowly reduced

Day + 100 BMB showed Mixed Chimerism 69%

Day + 114 DLI (No1)

Day + 196 Cyclosporin stopped

Day + 269 BMB showed Mixed Chimerism 48%

Day + 281 DLI (No2)

Day + 284 GvHD in bone marrow - weekly blood transfusions for three months

Day + 325 BMB showed Mixed Chimerism 65%

Day + 304 DLI (No 3)

Day + 332….. Classed as in remission and NED (No Evident Disease)......... which I found bizarre as a Chimerism Blood Test still showed Mixed Chimerism but in their eyes my Mixed Chimerism was steady - Some people never reach 100% Donour

Day + 455 BMB showed Mixed Chimerism 70%

Day + 697 BMB Showed Whole Blood Lymphoid and Myeloid Lineages are 100% Donor........ 23 months after my second Allo SCT

Hi, 

Hi again Andra 

Hi,

Sorry I haven’t replied to your message life’s been so busy.

My mum developed severe GVHD and her skin was very much affected as well as the liver. She received a second dose of stem cells on 12th Feb 2024. A month later she developed GVHD. She was put on steroids at the start and the skin was getting better but her liver wasn’t and as a result they started a new treatment called ECP (it’s similar to dialysis, the only difference is they expose the white blood cells to UV light). Her liver enzymes were going down slowly and she was on the road to recovery. However, things took a turn for the worse and she developed a cough which later turned into pneumonia, the flu and sepsis.  She ended up in intensive care at the end of June this year and has been intubated since and is on the ventilator. There have been some ups and downs whereby the doctors have told us she is at risk of passing away however, she has beaten the odds and is slowly showing signs of improvement. At the moment she’s on a tracheostomy mask and is able to breathe on her own for 20 hrs a day. They’re planning on slowly taking her off the ventilator in the next few days depending on how she is. The consultant told us that the infection in the lungs is still active and is the same as it was before when she was very ill, i’m confused as I can’t explain how she’s doing so well and at the same time she still has the infection. They said that the antibiotics are working but the fact that her immune system is weak is not helping the situation. My question is, would she be able to get rid of this infection at all? Without the help of the immune system? Her white blood cell count is relatively within normal range…

They have also taken some biopsies from the intestines and established that she now has gut GVHD which they described as mild…

Hi Andra sorry to hear about the bumps your mum has had on the road.

Andra said:

My question is, would she be able to get rid of this infection at all?

My simple answer is yes, but it may take some time and a little planning

Your mum’s post SCT journey sounds rather similar to my first 3 years post my second Allo SCT. 

I also had significant skin GvHD that fortunately steroids eventually did their job. ECP - Extracorporeal Photopheresis has been used for many years to treat GvHD…… it was considered for me but as I would have had to do a 7-8 hr round trip drive to get the treatment we persevered with the steroids.

I also had a number of donor lymphocyte infusion (DLI) and although this is used to support the graft….. it will also trigger GvHD. Thus was more evident as the GvHD did effect my bone marrow and stop it producing enough of the different blood cells so I was having blood transfusions every week or so for 3 months.

Over the past 9 years, but mostly in the first 3 years I have been 7 times back in hospital (40 days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x2, Neutropenic Sepsis x2, passing out….. oh and a heart attack.

The stronger her graft gets the better her ability to fight infections will get…… but you need to be prepared for her immune system not to 100% so she will always have to be vigilant.

I actually have 2 sets of wide spectrum antibiotics at home (on repeat prescription) that I can take at the first sign of infections…… 

I was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must contact the hospital.

Hi

thank you for your reply.

the doctors are now saying she has mild gvhd of the guts and obviously the liver gvhd is still there. She’s on medication for this, however, they can’t throw everything at it because of the lung infection which they seem to be prioritising. I’m not sure why and how shes clinically well but the infection is intact in her lungs and hasn’t even reduced… 

Her team will prioritise the greater need and control the other issues….. Lung infections are often the priority for obvious reasons.

I also have asbestosis in my lungs so when I get a lung infection it can take months to clear properly……