My Mum had a related donor 10/10 STC 18 months ago to treat MDS with 13% excess blasts. She has been doing really well - bone marrow biopsy earlier this year all clear and chimerism was almost 99% donor.
However, she was recently in hospital with herpes simplex virus and fungal infection on her lung. She has been on antibotics and antivirals for a month now.
Her bloods levels were holding during her hospital stay but have dropped over the last two weeks to levels similar to when she was having chemo. Her consultants don't seem particularly concerned and say her drop in bloods are more likely a side effect of the drugs she is on. She's had another bone marrow biopsy today to make sure nothing else is happening in her bone marrow. She is also very tired.
I am scared her MDS is relapsing. She was doing so well and I feel like her recovery is less certain now. Is it normal for blood levels to drop during these type of infections/as a result of constant antivirals and antibiotics?
Many thanks for your help.
Since my last post, my Mum's treatment plan changed as her trephine result was too high for Aza to be effective (or the consultants were unsure how effective it would be, although one thought it would still work!).
So Mum had Flag-Ida and is now recovering at home. She is wiped out by the intensive chemo but otherwise medically okay (infection markers v.low, no sign of leukaemia in aspirate BM). Met with consultant today as to whether DLI or second transplant (unrelated donor) is the next best route for long term cure....both seem to have pros and cons and it is such a difficult decision for Mum to make.
Any helpful information would be appreciated, as I would like for Mum to have all the facts before making her decision. We will also be getting more info from her specialist nurse team also of course over the next few weeks.
Tall gal xx
Sorry to hear your mom has ended up having Flag-Ida but glad to hear the BM aspirate is clear.
It is an extremely difficult decision to make, I agree. I've read quite a few medical papers comparing DLI with second transplant and the overall survival or long term cure were around the same. The most important thing seems to be that the person is in remission before DLI is given or before the second transplant.
I know that may not help you to make the decision, I guess the next thing is to look at the risks for both and how well your mom is. If the outcome could be the same for both options, which one do you think your mom would tolerate better.
Just remember it is not a decision to make on your own, be guided by your consultant and nurse team
Hope things go well for your mom whatever you decide
Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.
Thank you Jane. I think as Mum is leaning towards DLIs at the moment l, as the thought of a second transplant is scaring her. The whole family is scared at the moment.
I assume DLIs can be effective at keeping MDS at bay, on top of Flag-Ida chemo treatment? I am panicking at times that I am going to lose Mum all too soon (she is only 66), and can all too easily forget that she is well and being treated by the experts (Addenbrookes).
It has been a while since I posted in the forum, so wanted to update you.
I am so pleased and grateful to say that my Mum is doing really well. The Flag-Ida did its job although left her weak and took her a while to recover. But she really started to bounce back in November/December and her bloods continued to rise to very good levels. No nasty infections either!
She starts her DLI treatment next week. Chimersim still really good (99%/97% t cells) and bone marrow all good.
Consultants have said 20-30% chance of "cure" which has left me a bit worried. But he did say if signs of MDS re-appearing then Aza or other drugs can be used to control disease. Have you seen many MDS patients get a good response from DLIs? The literature I have read seems to lump "pure" AML and MDS in the same statistics, so hard to really understand whether to be worried or not.
Overall very grateful for where we are! My Mum looks better now than before her relapse!
Glad to hear that your mom is doing so well, and could not be in a better place from the results you have given.
Percentage of achieving 'cure' will always be on the low side as this is all going on after having had a transplant already so I wouldn't read anything into it. The main thing is her bone marrow is clear and her Chimerism has held really nicely. It may be that her Chimerism doesn't go any higher even with DLI as the levels are so good already, not everyone achieves 100% Chimerism but the DLI will help to consolidate the treatment she has already received.
The further out from treatment your mom gets the better chance she has of remaining in remission or being 'cured' so fingers crossed she continues as well as she is.
Hope you're ok too
Many thanks Jane. Re-assuring to hear what you have said. I thought she was in a really good place and is nice to hear her consultant and other stem cell specialists like you confirm this!
Hi Tallgal, great to hear this new about your mum, I am sure that the family are all so pleased with the progress that has been made.
The post SCT recovery does take some time and is full of bumps in the road but she will get there.
I just checked back and it was 23 months post SCT before my Whole Blood Lymphoid and Myeloid Lineages are 100% Donor. But I do know many others who have never reached 100% and are doing great.
If you have a spare moment could you come over and put an update up in the Stem Cell Transplant group.
We often have folks with the same condition as your mum who walk the same journey and news like this would be a great encouragement.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
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Many thanks Highlander. Yes, will post something in the STC group.
There are a few things that we have done differently with Mum in her recovery this time too - made a few changes to her nutrition (mainly using Turmeric Root) and use of Frankincense Oil. She has also been much better at looking after herself and resting (I have made sure of that!). Not everyone is open to the holistic approach to recovery, and I am not for one moment saying that these things have had an impact on her MDS, but anything to assist the body with its own healing is a good thing in my eyes .
Tall gal X
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