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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

Relapse scare similar experiences anyone?

Hi all I am nearly 9 months post an unrelated but 10/10 match SCT. I was in full remission after the first induction chemo and only required one round of consolidation chemo (high dose cytarabine) before admission for SCT. The SCT was relatively uneventful with only mild GvHD of skin and a little in my liver. I was infection free throughout my treatment. My AML is secondary to NHL which was successfully treated in 2016. 100 day tests showed remission holding and 100% chimerism So so far so good!

I have not been feeling well - extreme fatigue, occasional nausea, weak and shaky for all of the last 9 months. Anaemia and the fact that I have a major blood group mismatch were identified as the probable cause. Nonetheless I have attended hospital weekly for blood tests throughout this time. I was treated with Rituximab which does seem to have reduced my dependance on transfusions and Hb has been holding at 80-90. Iron build up was a concern after so many transfusions (ferritin was 5000) but MRI of heart and liver showed a small build up in my liver but nothing in my heart and after a short spell on Exjade we decided not to treat that. At the same time heart function was checked and was declared as fine by the cardiologist. I have now also been seen by an endocrinologist who ordered a whole battery of blood tests. I have not seen the results of those yet.

10 days ago I attended for the normal tests and out of the blue they told me that my potassium levels were dangerously low (2.4) Hb had dropped to 74 and platelets 11. The consultant told me that he thought I may have relapsed and performed an immediate BMB. He managed to get a good trephine but despite trying 3 times (I was sedated!) could not extract any aspirate. I spent 3 pretty scary nights in hospital getting blood levels stabilised and was discharged with potassium of 4.0, Hb 100 and platelets 20. The trephine was clear which was obviously of huge relief but the bone marrow is very distressed.

My blood group has finally changed during the course of the last couple of weeks but the docs tell me that that will not be the reason. In fact - and I like and respect my consultant’s honesty- he admits he is not sure what is going on. So we wait for the endocrinologists report. We know that my cortisol level is very low so it might be causing loss of adrenal function which would explain some of my symptoms.....

Anyone had any similar experiences and what other investigations have been carried out?

Thanks in advance

Gail



Comments

  • Hi Gail,

    I'm sorry to hear about the troubles you're having, it sounds like it is quite worrying for you which it would be for us all..

    I guess the positive news is that the tests you've had to date don't show anything abnormal, particularly the biopsy and the ECG. Ferritin does sound very high. Mine was around 1300 post transplant and the hospital target was 300 so I went through about 12 months of venesection which brought my levels down. I know that high iron levels can create complications with your organs but not sure that it would cause the distress in your marrow.

    You mention that you had a blood group mismatch which caused anemia and if your blood group has changed recently I wonder if that will improve things.

    I guess at 9 months post transplant your body is still recovering and adjusting so it could be a number of things. Have you had any infections or bugs recently? A few people have posted recently about flu which has affected their counts. If this has come on suddenly rather than gradual over a period of time it might point to an infection rather than an underlying problem.

    I'm sorry I can't be of much help as it's not something I've experienced but I hope it's something straightforward that can be addressed easily and quickly. I've seen several posts in the past with people suffering drops in their counts post contract so hopefully somebody may have experienced something similar and might be able to reassure you or give you some pointers.

    Please keep us updated and I hope you're on the up again soon.

    All the best,

    Steve
  • Thank you Steve. I have had no infections- at least none I am aware of. So remains a mystery. Hoping we can get to the bottom of it soon. Might get the endocrinologists report tomorrow when I go in for my weekly checkup.

    Gail
  • Hi Gail

    Thank you for posting, I am the lead nurse in patient services. I am sorry that you have had a difficult time recently. Your recovery over 9 months sounds normal although not pleasant for you. The symptoms you describe are typical post transplant and can vary over the amount of time you will get them but 9 months post transplant is still early. Having the anemia will not have helped your fatigue etc. and i am pleased that this has now improved. Hopefully you will begin to feel better.

    The combination of all of this can affect your counts and other levels in your blood so a thorough check up with the endocrinologist will be good and might help explain why you have been feeling unwell. As for the drop in blood counts, this can sometimes happen and you might not know why. Even without infection, the Rituximub treatment you have been receiving along with the impact of the transplant on your bone marrow can sometimes cause a drop. Your BM is still recovering and will be sensitive to treatments. The BM result is good and so hopefully with your HB improving you might now feel you are turning a corner.

    Recovery after a transplant can be challenging and you sound like despite all this you are doing well, so keep going, you are making progress.

    Keep us updated.

    BW
    Hayley
  • Thank you for your reassurance and encouragement Hayley, it is good to know that it is quite normal to experience unpleasant symptoms this long after transplant. The endocrinologist’s report was also reassuring in that there was nothing he did not expect to see. His only change was to suggest that I took my steroids on waking rather than after breakfast and possibly played with the dose a bit but only phasing them out when I started to feel better. A few weeks ago I was asked to start reducing but inadvertently came off them much quicker than my consultant intended and felt extremely ill as a result. A sensible dose has now been restored and I am now feeling a little better.

    I hope it is OK to ask another question? My GGT is very high - over 900 - on last week’s test. I hardly drink at all so it is not alcohol related and I am only a bit overweight. Very puzzled about why this might be. Drug toxicity perhaps? I am on Prednisolone, all the usual prophylactics plus Alendronate.

    Thank you Hayley

    Regards

    Gail
  • Hi all I thought I would post an update. A year since being diagnosed with AML and 9.5 months post SCT I am still transfusion dependent and suffering from extreme fatigue. I have had a total of three hospital admissions in May for observation and tests including a lumbar puncture and scans of brain spine and liver and an endoscopy. Oh and just for good measure another BMB. Not all results are available yet but having tested for viral and bacterial infection (negative) GvHD (too minor to be causing my problems) and relapse (negative on trephine and lumbar puncture but despite two attempts no bone marrow aspirate could be obtained). We are still at a loss to understand why my bone marrow is not functioning as it should. It is also proving very difficult for the lab to match blood for transfusion. My blood group changed from O pos to A pos about 4-6 weeks ago. My last blood test a couple of days ago showed Hb of 74 and platelets of 12. I had a platelet top up but with consultant’s blessing ducked a blood transfusion. I am taking Exjade to help flush excess iron from all the transfusions from my liver but as this has a very unpleasant affect on my bowels (enough said!) I don’t want to be on it for long! Also and more unscientifically I am hoping that deprivation of support from transfusions may actually kick start the bone marrow.

    Anyway next up is a repeat Chimerism test. I last had one at 60 days post transplant which showed 100%. If this tells us nothing useful then we will seek a second opinion but I have faith in my consultant so not confident that this will move us on any. Maybe it is just a matter of time?

    As always any thoughts appreciated!

    Gail
  • Hi Gail,
    I don’t really have any experience of what you are experiencing, the best I can say is that it was only around this time post transplant that things started improving for me. Like you, my medical team had no idea why my counts were so low for so long.
    I think you are right to wait for the results of all the tests and trust that your medical team will find the right way out for you.
    Sending you loads of strength to keep plugging away and wishing you all the very best,
    Greg
  • Aah thanks Greg. Appreciate your support. I am sure it is just a matter of time but I am a very impatient patient!

    Gail


  • Hi Gail

    I have had patients who have had very similar experience to you, it is very frustrating for you and I don't think you are inpatient we would all feel the same way. With the patients that I worked with the blood counts improved and returned to normal in time, some did need more treatment than others. There wasn't really a reason, which doesn't help you I know. The amount of treatment pre transplant, early viral infections post transplant and some medications can all be factors that can affect the immune recovery. But a reason might not be established and it might just be a matter of time. It's reassuring that BM, LP and scans are clear and this something that will get better.

    Keep going

    BW
    Hayley
  • Thanks Hayley. Yes I am coming to that conclusion too! Currently toughing out anaemia which is really sapping but hoping that by depriving my body of support from transfusions I can force the bone marrow to start functioning properly and limit the iron build up in my liver. Good news yesterday that the latest trephine test shows no evidence of relapsed disease - either DLBC lymphoma or AML. It was not possible to obtain aspirate due to reticulin fibrosis. My consultant is now running another chimerism test. Then I think I am really tested out! Gail
  • Well thank goodness! Chimerism remains 100% so its not rejection that is causing my symptoms!
  • Hi Gail,

    Tha'ts good news. If everything is clear and your chimerism is 100% it is hopefully a matter of time before things pick up and you're on the up.

    Keep plugging away.

    Steve
  • Grrrr went for blood test yesterday Hb 64 down from 75 in a week. Not allowed to duck transfusion so had 2 units. Had to give me universal donor though as have antibodies in my blood which means it is very difficult to match. All the tests I have had now show I am otherwise fit and well which is great but no help in identifying the cause of the anaemia. Appointment with consultant next week to go through everything and then probably second opinion.
  • Hi Gail,

    I'm one of the community champions on here. It's four and a half years since my transplant so I'm struggling to remember some of the details. However, I do know that when I went for a routine blood test about nine months post transplant, my neutrophils had dropped to nearly zero for no reason whatsoever. I then went in for daily monitoring for a while until they slowly picked up again. No explanation could be found except my bone marrow was still recovering. The chimerism result is great and I hope it can reassure you a bit.

    With best wishes,
    Sue
  • Thank you so much Sue and it is brilliant to hear you are 4 years post transplant! My concern about ongoing anaemia is that the endless blood transfusions are filling my liver with unwanted iron. I have a ferritin level of just less than 3000 down from 5000. I am on an iron chelator (Exjade) to flush it out. It is effective but has ghastly side effects in the form of dreadful diarrhoea. Also that my blood is so full of antibodies. It is proving very difficult to match which means receiving blood as an outpatient means very long days at the hospital which is a 2 hour drive from home. So I have been trying to tough it out without transfusion but that is not working so I feel a bit stuck!
  • Hi Gail,

    Do let us know how appointment with consultant goes. Blood transfusions always mean long, boring days and this is obviously even worse in your case. I remember the combination of being hooked up to a drip and diarrhoea - absolute nightmare!

    With very best wishes,
    Sue
  • Thanks Sue! I can drive that drip stand pretty fast - have enough experience by now to qualify as an advanced drip stand driver!! I have a very long list of questions for consultant- just hope he has done his homework! Thank you for your support it is appreciated. Best wishes Gail

  • Update. Met consultant yesterday and he had diagnosis for me. Anaemia is being caused by a surfeit of T lymphocytes in my blood and marrow which is preventing the development of red cells. So back on a much larger dose of immune suppressant medication (Ciclosporin) and back on all the usual prophylactics to ward off infection. The Ciclosporin should put the T cells back in their box and allow the red cells to recover. Not happy about the number of pills and potions I need to take but that is a small price to pay to get off the sofa and get on with life! Thank you to everyone for support.

    Gail
  • Hi Gail,

    It must be an enormous relief to get a diagnosis and a way forward. I agree it must be disappointing to have to go on the drugs cocktail again but as you say, hopefully worth it in the long run. Do you need to continue with the blood transfusions?
    Please continue to keep us up to date.
    Thinking of you.
    Sue
  • Thanks Sue! Yes I am thrilled to not only have a diagnosis but that the problem is treatable. I don’t know yet whether I will need further transfusions but hope everything works quickly and I have had my last! Gail
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