I may have questioned this before at an earlier time but it is still a big concern. My partner has post ET myelofibrosis. (ET for 5 years, diagnosed with myelofibrosis in April this year) He was taking hydroxycarbamide (not sure if I have spelt this right) for his ET and was started on Rux for myelofibrosis. However he continues to need the hydro at the same time. In April he was in hospital with pneumonia and kidney problems and required potassium and sodium, plus 4 units of blood one week followed buy another 2 units the following two weeks. He then experienced severe bruising and required platelets also.
He has been home now since late May although we attend weekly to the haematologist where he gets his bloods done. His present symptoms include a swollen spleen, night sweats and loss of muscle and weight, (although his appetite is very good at this time). However the symptom that has continued and which is the most debilitating is the extreme fatigue. This is so bad that it restricts his everyday life. He has extreme difficulty with stairs and can only walk a very short distance (on flat ground) before he needs to sit and rest for a long period of time. He also experiences breathlessness and a loss of strength of voice when he has had a short walk. He is therefore mostly at home, watching tv most of the day. He was always an active person who loved to work and socialise and this has robbed him of all of that.
His haematologist is a great believer in speaking about myelofibrosis as a journey that can be short or long and I can understand why she does this. However I am watching him struggle to try and do small things everyday and it breaks my heart.
So I am now going to ask if anyone has had any experience of these symptoms or cared for someone with these ongoing symptoms and if you can tell me if this is a progression to a more end stage myelofibrosis or a natural expectation of the condition.
Its just that I follow the posts and note that many of you have had myelofibrosis for a certain amount of time but that you can still do certain things in your life and live a good life, unlike my partner.
I am just so lost and he is my world and I worry about his future. But I would appreciate some honest facts.
Thank you
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Goldfish212
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I’m afraid that I don’t know too much about MF. I hope that others more knowledgeable on the subject can help.
My heart goes out to you; I can’t imagine what you are going through at the moment. Is it possible to have a private chat with your husbands haematologist?
Also, Maz maybe able to set you up with a ‘buddy’ who has or is going through a similar journey, it’s worth asking. It’s important that you get support too.
Thanks for your reply. I have tried to ask for a private chat but they said they will not tell me anything without my partner being present (even though he did say to them that they could).
You can request a ‘buddy’ from the email address below. You will have to register with MPN Voice if you’re not already registered.
Alternatively, you could put a ‘post’ up for the attention of ‘Maz’ (forum administrator), who will guide you through the process. I’m not sure of her email address, somebody else may help with this. Maz will endeavour to match you with someone relevant to your situation.
I’m surprised that you’re husbands haematologist will not discuss his case with you, considering your husband has given permission. It would be interesting to know what the reasoning for this decision is!
Hi. My husband was diagnosed with primary myelofibrosis in may 2019. He is intermediate 2 / high risk. He has never been to a doctor before and had put his exhaustion down to getting older, he's only 58. He put his pain down to an ulcer and just ignored it all till the weight loss could no longer be ignored.He was put onto Ruxolitinib straight away. In the information sheet his haematologist gave him it said his anaemia could get worse in the first 16 weeks, which would make the exhaustion worse but then should start to pick up after that. He has actually had more energy but it doesn't work the same for eveyone. His appetite has definitely improved and he's started to put weight on. It's also started to reduce the size of his spleen. He is going through the process of being put forward for a stem cell transplant, it's not suitable for everyone but is the only
cure at the moment for myelofibrosis. We're really worried about it as it's high risk but are glad to take the chance.
Ask his haematologist for any literature she has on Ruxolitinib.
Short note from me, but as someone who has experienced everything you have described for your partner, all I can do is offer some advice based on my own condition(s).
First of all, the main way you can help your partner, is by addressing his mental condition. I felt so many issues including dealing with my own physical failures (as I saw them) - I felt like I was letting down the people around me, etc etc. So as tough as it may seem, you may need to 'act normal' and let him know that it's ok for him to be open in front of you and not feel like he has to also force himself to pretend he is better than he is. I got so inward in my behaviour, that I actually was shutting out those closest to me because I felt like I was a failure and had to put on a front no matter what. I still feel a bit like that these days, but TBH I am a million times better than I was.
Not wanting to sound like a backseat doctor, I would be tempted to speak to someone about the breathing. I developed some quite severe clotting in my lungs (pulmonary emboli) and could not finish a sentence without stopping for breath in the middle. I was quickly referred to the right specialist who was able to work with my Haemo team and strike a balance of drugs (including Warfarin) that genuinely helped me improve in the space of a few weeks. I also suffer with regular anaemia, which just adds to it all!
HOWEVER - I will say that I used to run, cycle, box, dance, act...LOADS of physical activities that I just no longer have the physical capacity for, but whereas this time at the end of last year I was in a bad way (like your partner), right now as I type, I am doing much more than I have in months (walking the puppy, back to work etc etc) and am really embracing it as my new norm.
In short - let him know from me, that it fricking sucks to essentially feel like your body has completely let you down, but to be patient and tell people (especially you) how he is feeling. The more information medics have, the more chance they will have of helping him get to a place where things don't quite suck as much.
Try not to let him slip too far into that mental hole. It's arguably the toughest part of what is quite a major condition.
Hello. You are spot on with the mental health as I feel this may be contributing to his lack of inactivity also. And I believe that he also feels he is letting people down as he was always the very 'helpful and obliging' person in the family who most people came to if they were needing help with something. I think he now feels he has lost part of himself, but he wont speak about this. However I will take your advice on board about acting normal and letting him know its okay to say he is tired. Its good to hear it from someone else who has experienced this and hear your own personal thoughts about it. So thankyou for that and I will let him know what you said. I think he will feel better to know that it is not just him and that he doesn't have to try and put on this brave face all the time.
I mentioned this thread to my wife and she reiterated the points I made regarding trying to speak to someone about the breathing. Even if it turns out he is alright, it should be checked. We only found out about my blood clots in the lungs when she was a bit firmer about addressing that issue and we got referred across to the additional consultant.
As rubbish as it is, it's ok for him to take it easy. He'll come back, I'm sure.
I'm so sorry about your husband. I do not have MF but I do have to say many of the symptoms you are speaking about...difficulty with stairs, breathlessness, and fatigue are normal symptoms of anemia. I'm not sure if he is anemic at the moment but you did speak of blood transfusions in the past.
The weight loss despite a good appetite is called cachexia and is seen in cancer patients. I can't speak for your husbands future but I agree with Mary about finding a buddy for support. Hopefully at your husbands next doctors appointment you can attend and ask about your concerns. ❤
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Erythropoietin injections. Immature cells.
Lost my Haematologist to Covid19
ET since 2001, now anxious about changes in blood counts
ET or PV
What fatigue?
