Low blood counts - cause for concern?

Hi, 

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. 

  • Hi Tallgal,

    Sorry your mom has had a rough time recently, and I can totally understand your concerns.

    Thankfully the team have done a bone marrow which hopefully will give you some reassurance.

    As a haematologist relapse will always be in the list of possible causes but there are definitely other reasons in this situation.

    It is entirely normal for patients post transplant to drop their blood counts when they have one infection let alone two and if you put the joys of antiviral medication on top of that then there is no surprise that your mom's counts are struggling to hold up.

    I hope that helps

  • Hi , sorry to hear about your mum.

    At 10 months (July 2016) post my second Allo SCT I had some of the same problems, requiring blood transfusions every two weeks for about three months then had 5 times back in hospital (31 days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia, Septicaemia....... but all came ok ((hugs))

  • Thank you very much for this Jane. It is very reassuring to hear that it is normal for blood counts to drop when a patient has infections/is on antivirals. 

    Many thanks again, Tallgall x 

  • Thank you the Highlander - that is reassuring to hear. Just a bit scary when going through it as you don’t know whether it is normal/part of the process or something more serious could develop! Mum is strong and should not doubt pick up after a few weeks of resting. 

  • Hi Jane,

    Since my post, sadly Mum's condition has relapsed and her MDS has returned. Her bone martow biopsy showed blasts at 22%. Chimerism is still really high at 99/98% donor (which I find confusing considering the blasts?). 

    Mum's consultants are being positive though and are saying that they will start her on Azacitidine to get her blasts down and consider a lymphocyte top-up. No mention of intensive chemo or another STC yet...guess they won't at 66yrs old? 

    We are feeling devastated at the moment. How long can someone stay on Azacitidine for? Mum had some before and it has worked on her so we know that is a positive step. 

    Any reassurance and further information would be really helpful. Scared at the moment.

    Thank you, 

    Tallgal xx

  • Oh Tallgal I am so sorry to hear this, I was really hoping the drop in counts was due to the infections Disappointed

    Chimerism has to be one of the mysteries of life that we still don't fully understand, how can you be pretty much fully donor yet still the disease comes back but sadly it does happen.  You may find that your mom's chimerism drops over the next few months as the Azacitidine has an effect on the marrow.

    I will be honest and say that they are unlikely to consider intensive chemotherapy if the MDS has relapsed following the most intense treatment anyone can have, that of a stem cell transplant, and second transplants are seeming to be done less and less for the same reasons.  For a second transplant to work you would have to do something different to the first and would be risky.

    I'm glad they are able to offer Azacitidine.  As your mom has experienced, MDS can respond really well to it and the fact that she has had a previous response is always a positive thing.  Following that up with Donor Lymphocytes would then be the way forward to try and induce Graft versus Host Disease.  Don't worry they normally start off with small doses so if she does get Graft versus Host Disease it can be controlled, but this would be the most effective way of ensuring your mom stays in remission this time.....and it is entirely possible this can happen otherwise they wouldn't be trying it.

    I hope everything goes ok for your mom.  I am off for the next few weeks but the stem cell transplant forum is a fantastic support.

    Please let me know how things go Slight smile

  • Thank you Jane. That is interesting that Mum can stay in remission from the suggested course of treatment. I thought that Azacitidine was purely palliative care and that it was just a matter of time/years. However it sounds like I am jumping to the worse case scenario? 

    Thanks, 

    Tallgal

  • Thank you Jane. That is interesting that Mum can stay in remission from the suggested course of treatment. I thought that Azacitidine was purely palliative care and that it was just a matter of time/years. However it sounds like I am jumping to the worse case scenario?

    Thanks, 

    Natalie 

  • Hi Natalie,

    Patients can get into remission with Azacitidine, absolutely, and that would be the aim of giving it to your mom.  For a lot of patients when Azacitidine is used it would be for palliative reasons and to 'keep them going' as long as possible.  There is no denying it is trickier when patients have relapsed post transplant, but if they are able to bring the blasts right down and give Donor Lymphocytes the aim would be to put your mom into long term remission.  No one can say cure, but the longer she is free from blasts the more chance there is that this could be MDS gone forever. 

    Donor lymphocytes are not given lightly, they always carry the risk of someone getting Graft versus host disease, and there is always the risk of the Graft versus Host Disease being so severe that it can't be treated, so they would never be given as a palliative treatment, they are always given for a good reason.

    We sadly do still see patients that relapse post transplant, we are getting better at it but it is no where near perfect as you and your mom have found, but your mom is lucky in that she has a second chance and I do hope things go well for her Slight smile

  • Thank you - that is really reassuring to hear! We can't fathom why the first transplant didn't work as she had 10/10 donor match and barely any issues with GvHD or infections (until a few weeks ago!). But it just happens apparently.....

    I will keep you posted. Mum has done well on Azacitidine and top up of Lymphocytes before (she had last summer) so every reason to be positive. 

    Just one final question - I thought having a transplant would at least put Mum in a better position when it came to further treatment, more options etc..but I think you are saying it is trickier for Azacitidine/Lymphocyte top ups? 

    Best, 

    Tallgal

  • Hi Jane,

    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. 

    Best,

    Tall gal xx 

  • Hi Tallgal,

    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 Slight smile

    Hope things go well for your mom whatever you decide

  • 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). 

    Best,

    Tallgal x 

  • Hi Jane,

    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! Blush

    Best,

    Tallgal X

  • Hi Tallgal

    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!

    Best wishes,

    Tallgal X 

  • Hi , 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.

    ((hugs))

  • 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 BlushBlush.

    Best,

    Tall gal X