Hi everyone. This is my first time posting so please bear with me while I try to find my feet. I have had myelofibrosis for 28 years now. For most of that time I did pretty well, tolerating the drugs and living my life. It was tough at first because my beloved mum died of AML, having initially been diagnosed with MF, albeit a different kind. That was a long time before my own diagnosis though, and things have obviously improved a lot. I was on Interferon for the first few years, then Hydroxycarbamide and low-dose aspirin. All was relatively stable until 3 years ago when a horrible leg ulcer led to my being taken off Hydroxycarbamide. This was replaced by Anagrelide which I tolerated quite well but it wasnât enough on its own so, after taking much advice, I eventually bit the bullet and decided to go back on Hydroxy. The plan was I would be weaned off Anagrelide but, sadly, that never happened as they simply canât get my blood counts right. For a while now, Iâve been on high doses of these two toxic drugs and it seemed to be the best dosage since my platelets are on the high side (but not too high) and I am anaemic - and so so tired. If either med is reduced, each of those problems will become more extreme. Now I also have severe breathlessness on even mild exertion and I am undergoing heart tests⌠they think all my symptoms are down to the Anagrelide and want me to come off it. I will try to find out what my Haematologist thinks at my next appointment in a few weeksâ time but there seems to be so much uncertainty. My immunity is rubbish - currently I have shingles, in pain, with a streaming cold. And I am at a loss. I spent so many years not letting my illness get me down and now I feel like a strain and a burden and just want to feel well and have some energy again! Does anyone else have experience with Anagrelide or an alternative? Thanks for reading. Best wishes, Marilyn x
Oh, Marilyn, I cannot help with your medication, but you certainly must be feeling really rotten at the moment, I contracted shingles 5 1/2 years ago and I can remember how lousy I felt and that is without everything else draining you that you have going on, a streaming cold is the final straw. Please do not forget the Bloodwise Freephone Support Line is available for you Mon-Fri, 10am-4pm on 0808 2080 888. I know you are still familiarising yourself to this community forum, there are a variety of topics on it and I hope you find it supportive and interesting and I have posted about my shingles on it. I think that plus the Bloodwise Facebook site means that there is always a good place for you to be able to offload all your feelings. Take lots of care and keep posting how you really are feeling.
Erica, Thank you for your really kind and empathetic response. I have written to the support line but it helps just to be able to offload - something I tend not to do IRL! Thanks again x
Hello @Marilyn,
how are you feeling? You informed us that the medications you were on was causing your blood count to be quite high and you have shingles. You are more than welcome to vent to the forum if you ever need to.
Itâs taken me a while to motivate myself to write again but here I am! Since last writing nothing has really been resolved re my meds. The biggest change was that my anemia got so bad I had to have a blood transfusion, which has helped somewhat but only brought my HB up from 7 to 9.6. The other major thing is that, after a few years of contradictory information, I am now told that I donât actually have myelofibrosis!! I was definitely diagnosed with this after a bone marrow biopsy in 1990 and all my letters etc. confirmed it for at least 20 years after. Somewhere along the line the letters started being more vague, saying âmyeloproliferative disorderâ and occasionally ET. Has anyone else ever had a diagnosis reversed??
I am at a loss as to how scar tissue could have been identified all those years ago and yet now, on a BM biopsy, none is visible? Were they wrong? Has it healed? Neither seem very likely! Anyway - the other drug that may have worked for me in place of Anagrelide can only be given to MF patients, so I canât take it. I now have a doctor who is actually caring and taking steps to find out what is going on and what my options are, so thatâs something. She is looking into pegylated interferon which my hospital canât actually get!!
Not sure what else I can do right now but thanks for reading.
Marilyn, thank you so much for letting us know how you are and whatâs been going on for you. Gosh I donât know what to say it sounds really scary and confusing for you. I am so glad you now have a caring doctor that is taking steps to find out whatâs been going on. I find it is so much easier for me to say my questions, fears, thoughts and feelings to a doctor I feel is caring. I am sure others will relate to having such confusing medical appointments. I am really lucky to have my doctor too. I am just having my blood tests done on Tuesday and I feel apprehensive already Please let us know how you are getting on.
Erica, thank you very much for your kind, empathic response. I burst into tears in my first appointment with this doctor and apologised and she said its ok, it can happen when you are finally heard⌠No magic answers but one less stress when you know someone cares.
I wish you luck with your blood tests!
Sorry that you are feeling like this Marilyn, I donât have any experience of myelofibrosis or the drug but I really do understand how it feels to constantly suffer the fatigue and illness that comes with blood cancers. After my treatment for AML in 2015 I have never felt really well or full of energy. As you say I go through periods of accepting it and just getting on with it and other times when I just want to sit and cry because I am sick and tired of being sick and tired! Whenever I seem to start feeling good again I am hit with something like a bad cold or the last one was 9 days of diarrhoea. I also have pain all over most of the time so I can understand how this too can get too much. I hope it helps you to know that you are not the only one who gets fed up. warm wishes Anna
Hi Anna. I thought I had replied to this but now canât see anything so maybe I didnât. This loss of memory, focus, concentration is so annoying! Anyway - I really wanted to thank you for taking the time to write a nice, empathic response to my post. Iâm sorry for your pain and appreciate very much your reaching out to me. Love Marilyn x
Hi Marilyn
So sorry to read about all your trials. I feel that one element of long term chronic conditions that fails to be appreciated is the panic, anxiety stress and depression it creates in all of us, to a greater or lesser degree.
Acknowledging that and knowing it is not really catered for in our health system is important. Our lot are good at the medical machanics but poor things have very little time for the phycological symptoms created. This bit requires DIY treatment and is usually found in patient groups like this. We can empathise, we can offer ideas and support because we understand we have all been there and done that, many several times over.
Its a challenge, its annoying, its long term and may only be managable not curable but that does not mean there is no hope or light or a reasonaly living to be had. Its all about expectation, Its just a mountain that needs climbing, some can manage it quicker than others but together we can all get there bit by bit, step by step. Life is what you make from the cards you are dealt, you can choose to be walked on, help others or run ahead of the pack but always remember, how you choose to handle things should always be your choice for better or worse. So knowledge is the key to making the best choice for you. Never be afraid to question, research & listen. Then find the path that suits you.
I hope you find your solution, wishing you the very best of luck going forward.
Hello Karen and thanks for your message. You are so right about that element of long term conditions. What makes me so frustrated was that I have had this for so long - more than 28 years now - and until a few years ago I just got on with my life, clinic visits and blood tests and drugs and feeling tired just parts of that life that I paid little attention to. Itâs the change and uncertainty and lack of care that have got to me now. Thank goodness I now have a wonderful consultant looking after me. She even phones me at home with updates and I appreciate so much knowing that they are doing what they can. The inefficiencies continue to plague me though - not being able to book blood tests, not being able to get my drugs home delivered, not being able to get hold of the right person or have faith that anyone will call me back - all things that should be smooth but because someone somewhere hasnât done their job it puts me into battle mode which I really donât need. For me - itâs not at all about expectations, which I keep low. I just hope that Iâll be treated like a human being, with some understanding and compassion and the realisation of how much stress and anxiety could be avoided if they just acted promptly and efficiently. Handling my illness is easy compared to handling a situation when I have run out of drugs and canât get the next lot no matter what I do.
It is indeed a very sad state of affairs that our wonderful NHS has been brought down to. So wish this country would think more about whats really important - living a good life in good surroundings with healthy people rather than the profit driven world geared only for the richest in the society we all now live in. 
Thanks Karen. The latest is that my lovely haem consultant told me to bring my blood test forward so that we could see how things were going since starting vitamin injections as a trial to see if this alleviated my anemia without having to have another blood transfusion. So I had it done last Tuesday and guess what - nobody got back to me and I have spent hours on the phone to various different people - all in vain. I have now phoned PALS in the hope that they can do better. I await their call. I have coped with this illness for many years and could cope much better even with all the current uncertainty of it. The stress is all from this inefficiency and lack of care. It is throwing me back into the depression I have been fighting off for years.
Hi Marilyn, I also do not deal with personally stresses me well. Take care of yourself and I really hope the support and care I have found on this community forum will help you, please keep posting and let us know how you are getting on and feeling. Donât forget the Bloodwise Support Line details are above and are there for you to speak to, they are not available on Bank Holidays. Take care I find this can often be a difficult time of the year.
Oh dear Marilyn that does not sound good.
Do you not have a CNS nurse to coordinate things for you? I know hospitals do not like anyone but consultants to deliver test results but that takes so long. Very frustrating and depressing but very little will change it. They just donât seem to understand how agonising the waiting can be. You just have to learn to not to let it grind you down. Thats just counter productive.
Wishing you good luck, do your best to cope but do tell them when you can, the problems you have encountered.
All the best
Karen
Hello Marilyn. It is very difficult having to deal with long term conditions, and then having inefficiencies on top does grind you down. It may be worth putting a comment on NHS Choices about your health trust/hospital. I hope that you hear from somebody soon.
Hi there Karen. Thanks for your note. I met my CNS for the very first time in 2017. He seemed great at the time - promised that he would always be there for me and would respond to emails or phone calls immediately if at all possible, or that he would get back to me very quickly otherwise. Neither has turned out to be true. I have tried emailing and leaving phone messages and, after the first couple of contacts, he now never responds. On this occasion the Haem secretaries told me that they had emailed him and would try again (but of course they were short-staffed because of Christmas - even though I had the blood test done a week BEFORE Christmas for that very reason) - and that she couldnât get hold of him by phone (which is odd because I have a number). Anyway - I wonât bore you with the details but nothing I tried got me through to them or anyone else. In the end I gave up and phoned PALS. A few hours later a consultant phoned me with my results. She also spent time telling me that staff got caught up with critical cases AND that they had new computer systems which were making things less efficient AND that they were short-staffed because of Christmas (oh that one again). I have no idea why any of those things prevent someone from telling me my blood test results at such a critical time in my treatment. SighâŚ
Hello Louise and thank you too for taking the time to respond. As you will read in my reply to Karen, I did eventually hear from someone - but only after I phoned PALS. You are right. The inefficiencies really do grind me down - Iâm afraid to say that it happens ALL THE TIME. If it was just once or twice I could bear it but I could fill a book with how much time I spend trying to find answers to simple questions. Booking a blood test, getting the results, getting my meds - all become a battle with nobody apparently giving a you-know-what. I can live with my illness - have done for over 28 years and will continue to do so as I know many people are much worse off than I am. Itâs just that, now, while it is all so uncertain and I am so tired, I donât have the energy to fight but I have to because these are things I have no choice about. Itâs exhausting and so frustrating. Thanks so much for the opportunity to vent.
Hi Marilyn
Firstly I do hope your results were ok.
From what you say, sounds like the system was on serious overload for several reasons. However as you say, to us waiting on the other end thats no help. There seems to be so many protocols, systems and pathways nowadays that they are unable to function with any amount of common sense.
Just try to remember that you getting stressed does not help your system when its struggling to fight the invader. Trying to get âthe systemâ to work outside its boxes is near impossible, so try not to expect anything, no matter how simple it may seem. Instead make sure you make the most of any appointments. Keep a good record of all your queries, make a bullet pointed list of things to discuss and donât leave until all are ticked off. Give the nurse a copy on your arrival can help as well.
Try not to get too cross with them though. They have a tough time doing their jobs, tough decissions to make daily and are probably as stressed as you are.
All the best
Karen
Thanks for the encouragement Karen. My results were much the same as last time, so - still poor but no worse. Trust me - I have incredible admiration for the work our NHS staff does and never get cross with people trying to help me. Quite the contrary - I get cross with people who moan and whine at being kept waiting and other such trivia. The only place I do this is here, because Iâve been invited many times to use this forum to offload. The fact is, it IS stressful not to know how injecting yourself with a new drug is doing, it IS stressful not to be able to book an urgent blood test, it IS stressful to run out of vital medication and have no idea when or how any of these issues will be resolved. It IS stressful to be pushed from pillar to post and to be told someone will get back to you and nobody does, or simply to be told there is nothing they can do. I know full well that stress doesnât help, which is why I focus on keeping my life as stress-free as possible - and donât understand why people block me at every step. You hit the nail on the head by referring to lack of common sense. I just want them to remember I (and all of us) am a human being. I canât reduce my own stress - I need answers and if I canât get them I could get very sick. THAT is stressful. I do make the most of all my own appointments now that I have finally found a fantastic consultant who cares and pays attention. I had not had this for about 2 years since my previous consultant retired. Thatâs how long Iâve been seen by different doctors with nothing being done to find out whatâs causing my poor blood results and symptoms. I even waited SIX MONTHS for my initial cardiac referral. Thatâs stressful. I am not trying to get the system to do anything in the least unusual or difficult. Itâs just getting what my doctor wants followed up and acted on. Is that really so much to ask?