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Declining blood counts around Day 200

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greg777 Total Reaction Points: 62
Hi everyone,
I was wondering if anyone had experienced declining blood counts around Day 200? Mine have been going down steadily for the past month and are now the lowest they have been since transplant.
WBC - 1.53, HB - 74, platelets 40, neutrophils 0.89
All 4 are well down on a month ago and keep falling each week. I have not had any significant issues due to these counts - just the ongoing digestive problems which I have had since around Day 50 which was caused by acute gvhd.
Is it normal to be experiencing a downward trend at this stage in the process? Most people seem to be recovering around this stage, not going the other way.
Would appreciate any experience, guidance, insight that anyone has.
Many thanks,
Greg

Answers

  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 66
    Hi Greg

    I am sorry that your counts are dropping, I can understand your concern as it wouldn't be seen as normal for them to drop 6 months post transplant but it does happen and there can be a number of reasons for this.

    The first could be infection, even though you have had no significant concerns recently sometimes you can develop a virus that you might not even be aware of such as CMV, EBV, Adenovirus or parvovirus and this can affect your counts. Sometimes medications that you are taking can also affect the counts, if you are still experiencing gut GVH or if you are on any immunosuppression or steroids these can definitely cause your counts to drop especially if you have been taking the medication for a long period of time. I am sure your transplant team are already checking for viruses but have you had a recent bone marrow aspirate? If they cannot identify any cause of the drop in counts then this really is the only way to know what is going on with your counts. When looking at the bone marrow they can see what blood cells are being made, how they are developing and how organised they are and will inform them about how the graft is doing and your disease status. I am sure they have been checking you chimerism so it would be useful to know what that currently is and if that has been affected too.

    I realise this can be a distressing time but its really important to not jump to conclusions, from your previous posts you sound like you have had a fairly normal recovery with a good dose of gut GVH, which as I am sure you have been told is always seen as a good indication because of the graft versus leukaemia effect. So my main words of advice would be to speak to your transplant team and have a discussion with them about what they think is causing the low counts so you know what they are thinking, ask what tests they have already done and what the plan is moving forward and hopefully this will then make everything a bit clearer for you.

    Please keep us updated with your progress and feel free to ask any other questions you might have.

    Best wishes
    Hayley
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 254
    Hi Greg,

    Sorry to hear this and I hope it's just a monor blip and that things start to pick up again. The advice Hayley has given is really good and will help you ask the right questions to your medical team.

    Please let us know how you're getting on and what feedback you get from the medical team.

    Wishing all the best,

    Steve
  • greg777 Total Reaction Points: 62
    Thanks Hayley and Steve,
    I have had adenovirus in my blood for 4 months out of the last 5 (it briefly went away but then came back). I was told it was mostly low level and there was no treatment for it. I had EBV around Day 100 but a course of rituximab sorted that out pretty quickly. I have been on cyclosporine for over 6 months now so it could be long-term effects of that? The last bone marrow biopsy around Day 110 had really good results. 100% chimerism and stringent complete response in terms of the myeloma.
    I don't have any symptoms of the low blood counts other than feeling more out of breath than normal, I guess my mind is racing as it normally does about the worst case scenario.
    I will update you following my next meeting.
    Many thanks, Greg
  • RobA Total Reaction Points: 19
    Hi Greg,

    I had similar issues with falling counts around 4 months after transplant; my platelets and neutrophils were affected. This was at a stage where I hadn't achieved full chimerism so similar to you I did immediately fear the worst. The medical team at The Churchill put the drop to Septrin and my counts did rapidly recover once I came off this. Are you still taking Septrin?

    I hope everything normalises itself soon. It sounds like you are doing well otherwise.

    Best wishes,

    Rob.
  • greg777 Total Reaction Points: 62
    Hi Rob, many thanks for your note. I am not on Septrin. I have been on cyclosporine, pencillin-V, aciclovir, posaconazole, ranitidine and calcium tablets for over 6 months now - could it be caused by one of those? I have also just been switched to ciprofloxacin because the neutrophils went below 1. I haven't had any adverse effects due to the counts other than feeling tired with the smallest bit of exercise - just getting anxious that I am only just experiencing this so long after the transplant - it just isn't what I was expecting and the anxiety is getting unbearable. I realise a lot of this is probably just in my head.
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 66
    Hi Greg

    I am sorry you are having such a difficult time at the moment. Have you talked to your consultant/ clinical nurse specialist and discussed your concerns? This should help answer what they think is going on and what the plan is. If you haven't I think its really important for you to do this, it might help relieve some of the anxiety and clear your head.

    Best wishes
    Hayley
  • greg777 Total Reaction Points: 62
    Hi Hayley, the last time I spoke with my consultant which was 2 weeks ago, the distinct impression I got was "we don't know". Tests have been run for certain defiencies like folic acid and vitamin B12 but they came back ok - I have had this adenovirus kicking around for the last few months and it "could" be that. My lead consultant is always relaxed and makes you feel like there is nothing to worry about. I don't know whether this is truly the case or because he knows how anxious I get about everything. I spoke with a junior doctor and they ask questions about the last bone marrow biopsy I had and what my kidney function is like - this sets the paranoia levels into overdrive. My next meeting is on Tuesday so I will quiz them further if the counts are still showing an adverse trend. I think part of of the problem is that I just want to know what is going on so I can then control the situation. I know in my heart of hearts that maybe this is just not possible with a thing like a transplant - it was the same with the acute gvhd - when the steroids didn't work the consultant was quite open in saying that there are lots of second line treatments, we just don't know which one will work. I should have learned my lesson then that there is just so much uncertainty with this process and you can't control it in the way I like to control things.
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 66
    Hi Greg

    Its completely understandable to feel anxious, its a normal response in this situation so don't beat yourself up about feeling that way. You are completely right that recovery after a transplant is uncertain and that is one of the most common things our patient's will say can be the hardest thing to cope with. Its our job to provide you with answers and reassurance to help alleviate your concerns. From what you have said your team seem quite open and honest in giving you answers, so on Tuesday maybe go ready and prepared with some questions that you think will help answer your main concerns.

    As you have already experienced sometimes the transplant team will not have the answer immediately and it can be a process of elimination to get to the bottom of the problem. Although this can be frustrating for you, they are doing all the right tests to find the answer. The loss of control you feel is also very normal, so even though you cannot control the blood results maybe try focusing on something else you can control like your fitness for example. You said you feel tired after the smallest bit of exercise so maybe in the next few weeks work on building that up slowly whilst being realistic in what you can achieve. We know that exercise will not only make you feel better and improve symptoms of fatigue but it will hopefully make you feel like you have gained some control back over your body and health. It can make you feel stronger both physically and psychologically.

    I know this is not an easy time but it will get better.

    Keep in touch
    Hayley
  • greg777 Total Reaction Points: 62
    Thanks Hayley (and others) for your kind words of support. I had the meeting with my consultant today. He has booked me in for another biopsy next week - he doesn't believe that my low blood counts mean that the myeloma is back but this is the best way to be sure. He thinks it is more likely that my stem cells are struggling to produce enough cells. He referred to planning for a stem cell top-up from my donor in about 6-8 weeks time. I asked him whether I should be worried, and he said he wasn't - whilst it wasn't what he would have hoped, it does happen in 10-20% of transplant cases and the top-up is not another transplant -just a top up infusion of T-depleted donor stem cells. So my question now is whether anyone has had any experience of this procedure and what I might expect? Part of me is happy that we are moving forward with treatment but part of me is very nervous as I had not heard about this top-up before. Any insight /guidance would be very gratefully received. Many thanks, Greg
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 254
    Hi Greg,

    I've read a couple of posts about stem cell 'top-ups' and from what I've read it is quite common and not a particularly arduous procedure as it doesn't require the preparation beforehand that a full transplant needs. In effect it's giving your new cells a little boost and is probably no different to having a transfusion of blood.

    Hopefully it will be enough to get your recovery back into high gear and back on track.

    All the best,

    Steve
  • greg777 Total Reaction Points: 62
    Thanks Steve, very much appreciated. I am really hoping the top-up will do the trick and get me back on track.

    Not sure if congratulations is the right word for your anniversary but milestones such as yours certainly need to be acknowledged and for someone like me who still feels deep in the process, it is always great to hear stories from people who have come out of the other side. Hope you marked it in an appropriate way.

    Many thanks, Greg
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 66
    Hi Greg

    Sorry for the delay in response, I have been on annual leave. A stem cell top up can be needed in some cases post transplant and Steve is completely right in that it is a very straightforward procedure and can all be done as an outpatient. There are a few threads on this forum from other patients which you would find useful regarding stem cell top ups, you might have already seen them by now.

    I am pleased that your consultant is not concerned you should be reassured by this. The top up should give your counts a boost and then you can get back on track with your recovery.

    Keep us updated.

    Best wishes
    Hayley
  • greg777 Total Reaction Points: 62
    Hi Hayley,
    Thanks for your note and hope you had a good holiday!
    A quick update from me - the results from my bone marrow biopsy still show no signs of the myeloma returning, for which I am incredibly grateful.
    My counts, however, are continuing their merry slide into the abyss and plans for the stem cell top-up are gathering pace. My consultant again was relaxed and not worried about my status - he said my counts are not low enough for me to be admitted. I know what he was saying, but still it didn't fill me with loads of confidence. He again said that the top-up procedure is straightforward but then proceeded to tell me the story of one patient who had a top-up and for 3 months afterwards had no improvement, such that he had almost run out of options about what to do with them. I know he didn't mean to, but it left me with the impression that this is getting towards last chance saloon.
    Therefore, i'm now just looking for any words of wisdom to help reassure me. I realise there are no guarrantees in anything and that I am exceptionally lucky to be cancer-free, I am just scared that the counts won't recover and then what happens then?
    Many thanks, Greg
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 254
    Hi Greg,

    I know it will be hard to feel positive but the fact that one patient didn't respond in the past doesn't mean that you will be the same. I guess your consultant has to make you aware that it might not work but as Hayley has said it is a straightforward process and not unusual, so there are probably more successes than failures and you must go into it believing yours will also be a success. There are others here who have had the procedure and it has successfully kick started their counts, so you must believe that your counts will get the kick start too and shoot up afterwards.

    I'm a firm believer in positive thought and that staying positive helps even though we all know that is difficult when we face such difficult challenges.

    We're here to support you and get you trough this so I hope we can give you some assurances so please keep going and share your feelings with us so that we can help.

    All the best,

    Steve
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 66
    Hi Greg

    I just want to reiterate what Steve has said, you must try and stay positive. Like with any part of having a transplant there is uncertainty and if you start thinking about all the things that might happen then you will drive yourself mad. Focus on the positives, you are cancer free, you are getting stronger, the treatment you need is straightforward and the chances of success is high. Keep going with your recovery and you will soon be back on track.

    Best wishes
    Hayley
  • greg777 Total Reaction Points: 62
    Thanks Hayley, thanks Steve, as always you are spot on. So much of this battle is in the head - there really is no alternative from thinking positively and there is so much that I have to be thankful for. I think I am the sort of person who doesn't like surprises - you would think by now that I would have learned that I can't control very much about this whole process!
    Thanks so much for your words of support, they are exactly what I need to keep me on the straight and narrow!
    Many thanks, Greg
  • greg777 Total Reaction Points: 62
    Hi everyone,
    Has anyone come across problems with histiocytes after transplant. My consultant told me today that the more detailed bone marrow biopsy showed an unusually high volume of histiocytes in my marrow. This is likely what is causing my poor blood counts and the stem cell top-up has been put on hold while I have a series of virology tests to see if an underlying infection is causing the histiocytes to misbehave. My consultant said it was highly unusual and not what he expected to see - I don't think he has personally come across this before. So now I am looking for any insight from anyone who has some knowledge of this - I desperately don't want to consult Dr Google for fear of what I will find out.
    Thanks everyone!
    Greg
  • Chiara_AnthonyNolanChiara_AnthonyNolan Total Reaction Points: 8
    Hi Greg
    You're right not to consult Dr Google! Not because it's bad, just because your histiocytes are related to your transplant rather than occurring by itself out of the blue. So whatever you find won't be specific or even particularly relevant. I'm afraid it's another case of watch and wait until you see the team again. I hope you don't have to wait too long; I imagine waiting is the last thing you want to do but try and put it to the back of your mind when you can. Hopefully somebody will come along on here and put you at ease but like you say it sounds pretty rare.
    Keep us updated.
    Chiara
  • greg777 Total Reaction Points: 62
    Hi everyone,
    I just wanted to provide an update as to how I am getting along. I have had two bone marrow biopsies, chest scan and a series of blood tests to try to work out why my blood counts are still struggling. Thankfully, nothing serious has come up in any of the tests, for which I am very, very grateful. The consultants think that my stem cells are just struggling to create enough blood cells because of the GvHD and the numerous infections that I have had post-transplant, so we are all systems go for a "CD34 stem cell top-up" in the first week of December. The consultant tried to explain how the cells are treated to reduce the activity of part of the lymphocytes (to limit the likelihood of GvHD) and that I didn't need any conditioning treatment before the stem cell top-up. So the procedure sounds pretty straightforward, but I wondered if anyone on the forum had done a similar procedure and could share experiences on what I might expect? (how did you feel?, what was the process like?, were there any side effects, etc?). Any insight / guidance that anyone has would be very much appreciated.
    Best wishes to everyone.
    Many thanks
    Greg
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 66
    Hi Greg,

    Good to hear from you. I am glad the stem cell top up has now been planned and you have a date to aim for. You have had a long time of uncertainty and I know that must have been difficult.

    As we have said previously a stem cell top up is very straightforward and depending on were you are being treated should only require a couple of nights stay in hospital. The recovery is nothing like after having a transplant and really you should just get back in to the routine you had before. The stem cells should give your immune system a bit of a kick start which is what it needs and hopefully you will see your counts improving over time. The response might not be immediate so be prepared for that. Obviously nobody wants you to have lots of GvH but this is the main side effect and it just needs to be controlled. Actually having some GvH will be a good thing as this can stimulate the new immune system, so you need to be looking for skin rashes and any abdominal symptoms like diarrhoea and make sure you keep your team informed.

    I hope others who have had a stem cell top up post on here to give you a more personal experience. In practice I have been involved with patients that have had good results, who I now see in a late effects clinic as they get back to normality and move on with their lives.

    I hope it all goes well Greg and lets us know how you get on.

    Best wishes
  • greg777 Total Reaction Points: 62
    Hi Hayley,
    Many thanks for your support and advice. At my review this week, I have been told that the stem cell top-up has been put on hold. This is because my counts are generally slowly improving. All 4 of the main counts are still below the normal range and have been for over 6 months now. The WBC concerns me the most because this count goes up and down even though I am taking regular gcsf injections. I suppose my question is in your experience is it OK to watch and wait at this stage post-transplant to see if the counts improve on their own? I am 10 months post-transplant now and I read somewhere that top-ups are more effective when done closer to the transplant. I am the sort of person who likes to take action to sort out problems so watching and waiting to see if problems fix themselves does not come naturally. Do you come across examples where people's counts don't go back to normal for a long time post-transplant? I suppose I am looking for some reassurance that doing nothing is a reasonable action for me at this point. I am happy to accept that perhaps blood counts are a dark art and no-one really knows why they are what they are, but I just don't want to be in a position of regretting not doing something if there was something I could have done proactively to get them improved.
    Many thanks for your help,
    Greg
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 66
    Hi Gregg,
    Thanks for your post. It can happen that if the consultant feels you are improving they will hold off on the stem cell top up and although this is frustrating for you because you have been getting yourself prepared for it, its not a bad thing. If your counts are showing signs of improving, even slowly and they can do so without the top up, this is better because you then have not got to go through the risk of GVH.
    If they had already planned the top up then putting it on hold is easy and if they decided to go ahead at a later date, getting the plan back on track should also be straightforward.

    I know waiting is one of the hardest parts of this process and we ask our patients to do this all the time, action always feels better because you feel you are doing something. Pre transplant I always tell my patients that they will have to learn to be patient whilst they recover and in some circumstances, like yours, its a massive understatement. 10 months later you are still experiencing problems with you counts and you are still being asked to wait. However your transplant team have lots of experience and will be making decisions using that experience and for your best interests and yes I have also seen this with patients that I have worked with. Maybe view the not giving the cells as a form of action, a plan is still being made its just had a slightly different route than what you thought but the goal is still the same. You are in fact making progress.

    Hang in there, and keep your focus on staying strong and keeping well.

    Best wishes
    Hayley
  • greg777 Total Reaction Points: 62
    Hi Hayley,
    Many thanks for your support with this. I had a good talk with my consultant today and he allayed my fears in that he said that it is mainly when you are doing a DLI that it can be preferential to do it closer to the transplant, and with a stem cell top-up, it doesn't really matter when you do it post-transplant. So that helped me with my lack of patience! And as you say, the really positive thing is that the counts are improving so things are headed in the right direction - my blood count graph is finally beginning to look like a U-shape! And I am feeling a lot better within myself than I was a month/6 weeks ago, which has got to be a positive thing.
    Thanks very much for your support!
    Greg
  • TJM Total Reaction Points: 3
    Hello Greg, I've read through this thread and I feel my husband is travelling along a similar road to you with low blood counts, I've spoken to you before and here I am again, John my hubby is on day +144 and all his counts are dropping he is neutropenic with platelets of 44!!! He is having a biopsy this Wednesday to check on chimerisim and to see what's happening with counts! Consultant has rang us to say she has looked at Johns blood under microscope and it doesn't show anything that shouldn't be there!!! But obviously the biopsy will tell us more!! I can see you've been through this worrying time that's why I've commented on this thread! Thanks again for all support.
    Kind regards,
    Tracey
  • greg777 Total Reaction Points: 62
    Hi Tracey,
    Thanks for your post. I really hope you get some positive results soon. I really feel for you as the period when i was writing these posts was the worst in my whole life, much worse than the transplant itself. All sorts of thoughts clouded my head. I think the only thing you can do is watch and wait, do the tests and follow whatever the specialists tell you to do. If it is any sort of comfort, my platelets got as low as 20, HB in the 60s and neuts 0.something (sorry, I can't quite remember). My chimerism dropped to about 80% i think. The doctors kept plugging away and about 8 months in something worked. We are not sure quite what, but something clicked in and they started to improve. Just over one year post-transplant, I am now back to work and feel as good as I have for a long time. So as clichéd as it might sound, the only thing I can say is keep hanging in there, keep striving, keep plodding on, no matter how horrible it gets. Try to get the balance right between wanting to make things better and letting things be. I know that sounds easy written on a page, but I reckon that's all any of us can do. And it definitely can get better, no matter how long it takes - I am living proof of that.
    Sending best wishes to you and your husband and please keep us updated. I know everyone has an individual journey but I think I speak for many on here that we understand some of what you are going through and we really want to help in any way we can.
    Greg
  • TJM Total Reaction Points: 3
    Thank you for your detailed reply Greg, yes it is definitely a time to watch and wait biopsy is set for tomorrow just want results back from that. Thank you again for all support
    Kind regards,
    Tracey
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