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Hello! And my first anxiety moment

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Cellbydate Total Reaction Points: 1
Hi all, I’m new here, I have just had a allogenic sct for aml which first came about in nov 2016 and relapsed in October 17 even though all my marrow was clear, and all markers were favourable etc.

I have never joined a forum as I tend to always focus on the negative posts and can’t see past them which doesn’t help my struggle with anxiety

All has gone well so far with my transplant I was out on day +13 and counts were looking good although on a GCSF boost! I am now day +26. Last week my neutrophils and platelets dropped, neutrophils to 1.6 and platelets from 320 to 255. I’ve felt rough all weekend and had a mild temp, and very tired. Today I went for blood checks and my neutrophils thankfully have gone up to 4 but what is worrying me the most is my platelets have dropped further to 150. The doctors and consultants have said this does not worry them as my bone marrow was loaded with stem cells and then boosted with GCSF and this is all part of it settling down. The specialist nurse also said she was surprised that my platelets were so high last week. But to be honest, I’ve gone past the point of listening to reason, which sounds stupid, but having been told not to worry just before I relapsed, it’s something that I now struggle with.

I know I should listen to my consultant, he is an expert and leading the field in AML but I just can’t seem to stop thinking the worst, that I have already relapsed.

Is it usual for such a big platelet drop after GCSF? My neutrophils went from 22 to 1.6 in a week so I am guessing anything is possible?

Having search the forum the only posts I can find that are similar did not seem to end well, so I am looking for some kind of reassurance I suppose!

Whether I will listen or not is a different story but that’s another problem I have to face on time.

Comments

  • greg777 Total Reaction Points: 83
    Hi cellbydate,
    Welcome to the forum, although sorry for the reason you had to post.
    Ah, the dreaded blood cell counts and the awful anxiety that comes with their analysis. I have definitely been there so I know what it feels like, and I also know that how ever many times I say to not worry about them, it is only natural that you will carry on worrying about them. But if it helps, in my experience of being on this forum over nearly two years, I would saying that fluctuating blood counts at your stage post-transplant is entirely normal. There is a chance it could be bad news, but I would say the much, much more likely scenario is that things are just taking time to settle down. I was always told by my consultant that he doesn’t really look at individual counts and instead looks at the trends over weeks and months before deciding if there is anything to worry about. Your counts still seem quite high to me - I was consistently outside the normal range for about 8 month’s post transplant so I would think watch and wait would be the protocol right now. I remember over-analysing each individual count and in hindsight I think it made me more poorly, so if you can switch off the “what ifs” I think it will really help. I think one of the biggest challenges after you have been through the process is living with the uncertainty. I sometimes think that is harder than the physical aspects. So try to be kind to yourself as best you can, continue to focus on what you can control, which is building up strength, introducing balanced foods into the diet and resting, and give yourself and your blood counts some time to get through the major procedure that you have just been through and hopefully you’ll soon find things begin to settle in your mind too.
    Hope this helps in some way.
    Greg
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 282
    Hi there and welcome to the forum.

    As Greg says you're at that early stage in your transplant where things can and often do fluctuate and we have seen several posts on here with patients concerned about drops in their counts. Your system is in its infancy at this stage and very fragile and often it is something like a minor infection that causes a dip in counts.

    I remember still having blood and platelet transfusions for some months after my transplant to give me a top up due to low counts though generally my Neutrophils maintained a steady climb.

    Hopefully in your case this will be the case too and your counts will start to pick up again. Its perhaps a good sign that the GCSF injections have helped give your Neutrophil count a little boost and hopefully that will continue.

    If things don't pick up as they should there are options open to your medical team to give things a kick start, but hopefully you won't be in that situation and your counts will look after themselves.

    Please keep us updated with how you get along as things progress.

    Best wishes,

    Steve

  • TonyHTonyH Total Reaction Points: 13
    Just to echo the comments from Greg and Steve, counts can fluctuate a lot in the early days. In my case they rose as expected post transplant but then after an infection / spell of GvHD they fell and despite being back on GCSF I was readmitted to hospital 2 months post transplant with neutrophils of only 0.02. Like Greg says it's hard not to let your mind think the worst at these points. However they recovered on their own and they've been fine since.

    Don't underestimate the impact having some kind of infection can have. I'm just over 2 years post transplant now and before Christmas had a couple of viruses that knocked my Hb down by 15 pts. The doctors ran a number of additional tests but the conclusion in the end was that it was just the infection and everything has since normalised.

    We all understand that it is hard not to obsess about every test result but they can be very misleading.

    Wishing you all the best.

    Tony
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 78
    Hi

    Thanks for posting, I am the lead nurse in patient services, I am sorry that you feel so anxious about your counts. They sound entirely normal to me, its so early after the transplant we wouldn't expect such high platelet counts and this would have been boosted by the GCSF. Your counts are now settling so try not to worry. Its very normal although not very nice to feel tired and rubbish at this stage, its great to be discharged so early but it can be a bit misleading in terms of how you expect to feel. Also having an infection is a normal side effect and this can affect your counts too. Try to focus on keeping yourself well, eating and managing some exercise every day as all of this will help your recovery.

    It is easy for me and other health care professionals to say everything is OK, I realise we do not really know what it feels like to be told bad news but I have looked after many patients in the same situation and nothing you have said worries me. In time you will regain the confidence back in your body.

    Keep us updated

    BW
    Hayley


  • Cellbydate Total Reaction Points: 1
    Hi all, and apologies for not thanking you for your responses earlier. Things have been going well with my levels etc since my first post, the odd small dip in neutrophils to 1.8 but back up to 2.5 after that.

    However the last few weeks have been more troubling. I am today 4 months to the day since my transplant and last week my neutrophils dropped suddenly from 2.5 to 1.25, everything else remained stable, platelets 168 HB 138. After a week of terrible anxiety and worry I came in today for my next check up and although my platelets have risen to 196 and HB to 142 my neutrophils have dropped to 0.77 so I am clearly in a very confused place at the moment.

    A couple of things that the are looking at. First of all my vitamin levels to make sure I am absorbing them correctly. I also came off of MMF 2 weeks ago and it’s been suggested that could cause it. I’ve also got very sore and dry skin on my face, in particular around my eyelids which is very itchy. My cyclosporine is being reduced still which they started reducing last week and again this week by 10mg. I was clear of EBV and CMV last week so assume it’s not that.

    At the moment they are not looking at GCSF or a BM as my other levels are still ok, my wbc is 2.1 in-line with the above as my lymphocytes are 0.79 again another increase. and monocytes 0.3

    Any suggestions? I am very anxious still but trying to put reason behind it rather than assume the worst like I have been.
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 282
    Hi there,

    What you're describing in terms of the dry skin on your face and round your eyelids sounds a lot like what I experienced when my GvHD started and if that's the case it could have had an effect on your counts. Whilst that might sound worrying GvHD can be a good thing as it also creates a graft versus disease effect.

    You need to mention it to your consultant at your next appointment as they will be able to confirm it and start a course of treatment to deal with it. I initially started on a course of steroids (Prednisolone) and emolient creams which did have some effect on the GvHD symptoms, but it was treatment called ECP (Extra Corporeal Photophoresis) that got rid of it in the end. I am testament to the fact that skin GvHD can be treated successfully and I have had no effects since completing that treatment.

    But before anything you must check with your consultant to confirm that it is GvHD as it may be something else unrelated.

    A little advice regarding your dry eyelids. I woke one morning with extremely painful eyes to a point where I couldn't open them. When I was able to prise them open my vision was blurred and the eyeballs were very painful. I couldn't stand opening them in bright light. Fortunately I had an appointment at the hospital that morning and when I reported to reception (guided by my wife) they took me down to the Ophthalmology department. On examination of my eyes after some anaesthetic drops had been put in my eyes to reduce the pain, it revealed scratches all over my eyeballs, which explained the pain and blurred vision. I must have been rubbing my eyelids due to the itching and rubbed dry skin across my eyeballs and scratched them. Try not to rub your eyes then and perhaps bathe them in warm water to soften the dry skin and wipe the loose skin away.

    I hope this helps, but try not to let it worry you because if it is GvHD it is a good thing in terms of your illness and it can be successfully treated.

    Please let us know how you get on.

    All the best,

    Steve
  • Cellbydate Total Reaction Points: 1
    Hi Steve

    I actually saw the dr today and she said that it was GVHD I have it around my eyes and face and a different type which looks like a bumpy heat rash on my chest so I’ve been given steroid creams. I’m already on a small dose of steroid for my stomach so guess that covers that part.

    I’m glad to have some degree of GVhD just hope it’s not come along too late. The falling neutrophils is causing me major stress and alstbough she suggested that the gvhd can cause a drop I’ve found noting online to say so. I guess I just have to be reassured by the other counts rising for the moment and try to take some kind of comfort in that

    Thanks for advice on the eyes I’ll take note of that!
  • greg777 Total Reaction Points: 83
    Hi Cellbydate,
    Just wanted to give you some reassurance that my counts were falling around this time post transplant - in fact my first post on this site 2 years ago was “Declining blood counts around Day 200”. I definitely understand that it is a worrying time but just wanted you to know it took almost 8 months before my counts started to rise again. We never discovered why they were falling. I would trust your medical team that they’ll be keeping a close look on you, and hopefully soon you’ll see the counts start to rise again.
    All the very best,
    Greg
  • Cellbydate Total Reaction Points: 1
    Hi Greg

    Thanks for taking the time to post, yes I have read your thread and it did give me some reassurance that it’s not necessarily relapse.

    It’s the waiting between clinic appointments that’s the hardest, which is only a week! I’m also very impatient and find myself wanting to know every possible cause, reason, outcome. I basically want to know an answer and find it frustrating when it’s not possible to give me one! I can’t imagine how you endured 8 months!

    I started on steroid cream yesterday and today the redness has gone down on my skin which is great, but now I am worrying that I don’t have gvhd after all and that’s not one of the causes!
  • greg777 Total Reaction Points: 83
    Hi Cellbydate,
    I think the uncertainty is the worst thing about this whole process. You sound a bit like me in that I was trying to control everything. I needed to know what was going to happen so that I could plan for it. That puts a lot of strain on the mind because this process doesn’t give easy answers. It got to the point where I had to let all that go and just let things be. Much easier to write than to do in practice. I tried to focus on just today, what I could control in the moment, and let the counts be what they want to be. I don’t mean to make it sound easy to control the anxiety, even now I stress about relapse now and again - but much less than before as slowly I came to realise that I can’t control whether that happens or not, and I should just focus on what I can enjoy today.
    And regards to the skin GvHD, it is possible one day of steroid cream could start clearing it up. Mine responded very well to steroids and was gone within a couple of days.
    All the best,
    Greg
  • Cellbydate Total Reaction Points: 1
    Hey Greg, yep sounds just like me, I’ve been like it since the day I was first diagnosed, managed to start controlling it and then the one month where I relaxed and thought, hmm this is actually going well I relapsed! So I am trying to desperately let myself do that again and not think the worst. It’s impossoble sometimes but does happen. I think I’m actually better this time around than I was first time around. Like you say trying to control it actually makes life **** and if it’s precious anyway then that’s the worst way to spend your days. Ha ha, that was much easier to type than believe!

    Good to hear about the gvhd, I’ve kept the cream going for now as don’t want it to come back but does seem to be a lot better!

    Cheers

    Martin
  • Cellbydate Total Reaction Points: 1
    I just re-read my post and noticed that it looks like I swore, it should have said the opposite to heaven! Not **** :)
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 78
    Hi Cellbydate

    I just wanted to add that everything you are feeling is normal, don't give your self a hard time but like Greg suggests also try and focus on how well you are doing. Neutrophils can fluctuate, its still early post transplant, you are off your MMF and reducing the CSA and you also have some GvHD all of which can affect the counts. Its very reassuring that all your other blood results are improving.
    Also the fact that you have responded to the cream means it is very likely to be GvHD, I would be more concerned if it hadn't so that is good news.

    Keep us updated and I hope you feel better soon.

    Thanks
    Hayley
  • Cellbydate Total Reaction Points: 1
    edited June 12
    Hi Hayley,

    Thanks for your reassurance, the rash has stayed less angry, still itchy at times and seems to have spread to my trunk where it really itches and looks more like little red dots or goosebumps.

    I think the problem with me is that I always need to know too much, and my consultants and nurses are fantastic but probably don't have time or the need to explain it all to me. So the fact that those things can effect my counts, doesn't really settle me down any until I understand why. I know why AML causes a drop as I've got my head around this a long time ago, but the MMF, CSA, GVHD and fluctuations doesn't make sense to me.

    I've tried to work it out in my head, and from how I see it, once we come off of MMF or reduce the CSA you would expect counts to rise, but I guess if the T and B cells are being less restricted, the first thing they will do is go and find out anything that is not supposed to be in the body and try and get rid of it, which in turn will probably activate neutrophils and use them up. If the bone marrow is still young, then it can't keep up with demand as much as a normal bone marrow so therefore a drop. I guess the same figures for the case of infection.

    In the case of GVHD, again, its an immune response, which causes inflammation, neutrophils are the first in line to arrive at the site of inflammation, therefore using up neutrophils. If the bone marrow was healthy in either of these cases I guess the Neutrophil case would shoot up as it would with an infection in a normal person.

    As for Neutrophil fluctuation, I get the odd fluctuation that I have had before 2.2 to 2.6. to 2.0 to 1.8 to 2.45 and so on. But from 2.5 to 1.25 to 0.77 seems a bit extreme to me, maybe its me just being over observant. I suppose in an individual that hasn't had a transplant and counts are up in the 4 or 5s then a drop of 1.7 is not the end of the world and still makes them far from neutropenic.

    Sorry for the offload of my brain, I think it helps to post it somewhere as its been spinning around since last Thursday. For now I seem to be assuming the worst even though there are many other reasons that it may be something else, but guess only my clinic appointment, chimerism result and bloods will tell later in the week.

  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 78
    Hi Cellbydate

    You seem to have a good understanding of what is happening so hopefully writing the post has helped make it all a bit clearer. The other thing to add is that all the while your immune system is trying to get stronger, its been suppressed by MMF and is still being suppressed by the CSA and is now also dealing with GvHD. Its not going to respond as quickly as someone with a healthy BM so the counts fluctuate.

    I realise that it must be very frustrating and with everyone telling you do not need to worry doesn't really help. Have you ever spoken to anyone about how you feel? I think the lack of control must be very difficult to deal with and maybe as Greg has suggested in order for you to manage over the next few months you might need a way of changing your focus. Speaking to someone could help you manage this, its just a thought. Maybe talk to the doctor or nurse and see what they can suggest will help.

    Keep us updated and I hope the appointment goes well later this week.

    BW
    Hayley
  • Cellbydate Total Reaction Points: 1
    Hi Hayley, thanks you, I think the thing that really troubles me is, is a fluctuation of the neutrophils as much as mine normal at 4 months post transplant, but I guess its a case by case which is why nobody can really say or would like to say, which is fair enough.

    I will speak again to my CNS tomorrow about seeing somebody to manage this better, I know I am down on a list waiting, I am also attending a mindfulness course to help too, which has helped a huge amount.

    Today I am feeling quite drained physically, which I am taking as either my body working hard to recover, or working hard creating things that shouldn't be being created! Again my mind wanders.

    Thanks for your support
  • Cellbydate Total Reaction Points: 1
    Well not good news at the hospital, my neutrophils dropped again to 0.4 and my platelets although still ok went down to 156.

    The worst part is my chimerism has dropped from 100 to 88% so I am having a BM to see if it’s my cells or leukaemia cells.

    I just feel numb at the moment but sure it will sink in soon
  • greg777 Total Reaction Points: 83
    Hi Cellbydate,
    I am really sorry to read your update. I am really hoping that the BMB shows up ok and that there is nothing sinister going on. I realise this must be an incredibly stressful time. I hope that you get some breaks from the racing mind. Please keep us updated.
    Sending you lots of warm thoughts,
    Greg
  • Cellbydate Total Reaction Points: 1
    Thanks Greg, I think I read somewhere that your chimerism dropped to a similar level too after being at 100% at 100 days, which is what mine was, the consultant did seem to think that although there is a chance it’s relapse there is equal chance it’s just my cells fighting back, but not so healthy ones hence the low neutrophils. What I still can’t work out is how 88% isn’t enough to produce neutrophils.

    I’m not holding out much hope for the BMB result, but having had a good chat with Hayley earlier I can see that there is some hope in the fact that I have not had a full on GVHD and am still on cyclosporine, which they are now cutting back pretty quickly, which’s gives something to try and hit it with. Feels a bit like reasons for this happening are being crossed out quicker than I would like but I guess the sooner we find the reason the quicker it can be dealt with.
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 282
    Hi there,

    I echo Greg and am sorry to hear that your chimerism has dropped and I really hope there's a straightforward reason for it. Fingers crossed for a good BMB result but when they know whats going on in your marrow it should give some pointers as to what needs to be done to rectify the problem.

    We're all here to support you however we can so please keep us updated as things develop.

    Best wishes,

    Steve
  • Cellbydate Total Reaction Points: 1
    I’m afraid it’s not good news, the aml is back with 30% blasts I am being admitted to hospital tomorrow to start 2 courses of Chemo which FLG IDA followed hopefully by DLI. I’m in shock and can’t believe it to be honest, not really feeling much positivity about the future. I don’t qualify for another transplant so my options are limited. I’m told this does work, but we’ll see.
  • greg777 Total Reaction Points: 83
    Hi Cellbydate,
    I am so so sorry to read your news. I have zero experience of your situation so I don’t think I can help in any way. I have come across people who have had FLG IDA and they have had success on it and so I really, really hope that you will find the same too.
    My heart goes out to you at what must be an overwhelmingly difficult time.
    Sending you loads of warm wishes,
    Greg
  • Cellbydate Total Reaction Points: 1
    Thanks Greg, I’m gonna give it my best shot! They said if I get into remission it’s probably 20% chance of cure / lasting remission And I’ve not had flag Ida before I had a trial drug pre transplant which I am not sue if I regret now
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 282
    Hi again Cellbydate.

    I'm so sorry to hear that the AML is back which must be so disappointing and worrying. There are several patients here who have relapsed and a number of threads regarding the treatment to get them back into remission and then undergo second transplants. Somebody out there will have experienced the same as you now face and those threads may be of help.

    The Anthony Nolan team, particularly Hayley will be able to help however they can and we will be here to hold you hand and support you all the way.

    I know it will be hard but hopefully you can go into this with a positive state of mind and a determination to get better again and get a successful outcome.

    Best wishes,

    Steve
  • Cellbydate Total Reaction Points: 1
    Hi Steve thanks for your message as far as I understand I’m not going to r given the chance for a second transplant, unless something changes in the time I am being treated so it’s soley DLI which makes me very nervous
  • Cellbydate Total Reaction Points: 1
    Well had a good chat with one of the doctors today about my treatment, and it was hinted that if I can reach remission well, do well with DLI and keep that going for a while then the future may give me the option of a transplant. Which I find confusing as I understood as I relapsed far too early for that, but maybe if I show promise and it’s thought to be the right way to go forward than maybe there can be exceptions? Seems like a huge long shot to me.

    Line is in and ready for final tests before chemo end of week, still not sure how I feel about it all, mostly like it’s all a waste of time but am trying to think that somebody somewhere has to be part of the percentage that has success. I just pray I make remission, never had any issues the last 2 occasions and went straight in but almost think that is giving me a false sense of security
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