I was discharged from hospital yesterday, originally admitted with shortness of breath but was soon diagnosed with Myelofibrosis. It was a huge shock as my haematologist has repeatedly told me that my falling blood counts could not be MF as my WBC were falling. I was treated by a different consultant in hospital who immediately did a BMB and confirmed what she thought was fairly obvious. Luckily, she has arranged that she will take over my care and, without wanting to be unprofessional, she made clear that she was shocked that her colleague had missed this. I will still be writing to PALS to let them know and investigate though.
I know there are others with MF here and I would really appreciate your thoughts on how you live well with this disease - diet, controlling anxiety, anything at all really. I am still in shock as it was all so sudden and unexpected and I am getting very emotional at times. I have started Ruxolitinib and will be having weekly blood tests and platelet transfusions for a few weeks but hoping things will improve when my spleen shrinks.
Thanks in advance. I am so thankful for this forum.
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Otterfield
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I am sorry to hear about your MF transformation. You said last year that you haemo was suggesting that your ET might be transforming into MF. What made him change his mind ?
Well remembered! Yes, that was last summer. My counts stabilized when I started Pegasys so the MF question was answered really. It was all this year that my counts started dropping again but I thought I had no reason to doubt him when he reassured me. How wrong I was..
Iam so sorry hear this I have mf to I got it really young 24 and went through hell to get diagnosed I read all the info online and scared me a lot is outdated and you can still have a life despite this condition it’s essential you get a good doctor that you trust as many to be honest have no clue rux definitely made my life better and it’s reduced my spleen you need to take some time and find ways to manage as best you can positive thinking does you good If you ever need to chat iam always here
Goodness that was very young to have to come terms with such a diagnosis. I am very encouraged by your experience with Ruxolitinib, especially as my spleen is huge at the moment. Thank you.
It takes some time to adjust... Try to be patient w/ yourself and stay as positive as you are able... I agree completely w/ your sentiments that diet & exercise are essential components of maintaining our health & longevity...
Once I commenced Ruxolitinib, (Jakafi), I felt like I got my life back ... My spleen returned to normal size (although it was not as large as some of heard of), and my mind fog cleared and I was able to slowly come to terms w/ both my diagnosis, and my newer reality...
BTW... it doesn't really matter how much (or how little) exercise one needs to get started... Small steps, start slowly and build consistency... When I first started I could barely ride my bike 3-5km, and now it 100s every week...
Thank you Steve. I certainly need time to adjust mentally and emotionally but I feel very encouraged by your experience with exercise. I love country walking and have been wondering how much I will be able to do. Now I am finally home I can get back to healthier eating - the hospital food was quite tasty but not very wholesome long term.
Hi.. I have just joined and read some of your chats with other people..You sound so positive and I wondered if maybe you would consider chatting with me...I have never done anything like this before, I can hardly use the Internet so don't really know what I am doing.. I hope it is ok for me to contact you... Best wishes Maria
Thank you for compliments, and it's no problem contacting me at all... Most everyone here would feel the same as do I... and that is that we are all here to aid and assist one another, as best we can with general experiences of our MPNs etc...
So feel free to fire away & ask a question or two, and I'll do my best to assist in any way I can...
Please let us know how you are coping. So sorry this was missed, You have been so helpful explaining what to look out for , many of us will be in the 'ET 'camp and do not really know how our condition will progress or when.
I will certainly keep communicating on this fantastic forum. I think MF has always been at the back of my mind but I've thought of it as something that would happen in the future. But now the future is unexpectedly here.
May I ask is you had any other symptoms aside from shortness of breath? I also have ET and am having SOB along with exhaustion and irregular heartbeats. I’ve been going the cardiac route having scans and other tests which reflect my heart is in pretty good shape, I’m 65.
I am now trying to get a referral to Hematologist to rule out MD.
Hope things progress well with your treatments and lifestyle changes. ♥️
Well, over the last few months I have been diagnosed with both acid reflux and venous insufficiency. So when my abdomen became bloated I assumed it was a symptom of acid reflux, as with a persistent cough I have had. I have had lots of fluid retention in my legs which is normal with venous insufficiency. Now I wonder if all or some of these symptoms were MF related.
Hope things go well for you. Do push for a BMB if you have any concerns.
So sorry to hear of your sudden diagnosis of MF . I have ET and recently Hydroxy managed to reduce my platelets from nearly 800 down to 285 within 2 months. My Haematologist has told me after 2 separate blood tests with this result that Imam now stable and has referred me to General Haemo Nurses' Clinic. I am worried as I now get breathless when going for walk which didn't happen before and I wonder how the Platelets suddenly stop going down further while on daily 500Hydroxy. How do we know if ET has progressed to MF if they leave it 2 to 3 months before blood test? Does anybody have any answers? Regards Fran.
I also have ET (diagnosed last October) and some shortness of breath after exercising. But my hemoglobin has dropped from 13.5 to 11.3 so I figure that's what is causing it.
Sorry to hear about the progression to MF. Socrates_8 and others with MF can do a way better job speaking to living with MF. Just wanted to give a shout out of support and commend you for formally complaining about your case being mismanaged. Inadequate/incompetent care should not be tolerated. It can only persist when people do nothing about it. Like all others, doctors need to be help accountable when they make mistakes. it is the only way they and the healthcare system learn and make corrections.
I am glad to hear you have switched hematologists to one who is more competent in MPN care. Far too many MPNers receive care from hematologists who do no have the KSAs to provide optimal care. We all deserve quality individualized care for the unique presentation we can each have for the MPN.
This is very disturbing as i too spent this past weekend in a hospital (Chicago suburbs) because of shortness of breath. All test came back showing nothing wrong. I was diagnosed with COVID 2 weeks ago. Last February diagnosed with ET JAK POSITIVE. They think it is the COVID but that is the ONLY symptom other than fatigue I always have. My research brought up Pulmonary Hypertension as a possible cause due to ET and high blood pressure. Now I have to ask about progression ! Uggggg ! Thanks. Sorry it happened but info is so important. Good luck.
Otterfield, yes diet is going to be the rudder going forward in determing the direction and speed of your MF progression. Your diet must be antiinflammatory. Identify the inflammatory items in each food group. Don't overlook autoimmune triggers creating inflammation and utilize a nutritionist familiar with MF for meal planning and further guidance as medications are prescribed.
This is a link to the Townsend Letter December 2017. Research each of the components mentioned as it applies to myelofibrosis. Always consult with your health care professional before using any supplement.
I’m sorry to hear about your transformation to MF. I think if we’re honest this is what we all fear, so totally understand your anxiety and fear. Take time to absorb it, deal with your emotions, and then put your boxing gloves on.
It sounds as though you have confidence in your new haematologist, so that’s a good start. I hope you find inspiration from how others cope with MF such as Steve (Sydney). It’s amazing how he’s turned his life around with diet and exercise....Ruxolitinib could have something to do with it too of course!
I love your suggestion about boxing gloves - that's exactly what I needed to hear. I agree that Steve's approach is inspirational. I accept that life will change and I think am grieving for the lost "me" but I really want to live the best life I can.
Hello, it seems we had a similar experience. I was going to the same hematologist for 10 years (since 2008) for ET. In 2016, he said I was progressing to PV, but he really never gave me an explanation. In 2018, my RBC and hemoglobin started dropping and he told me I had become anemic. I was feeling really out of it, unable to work a full day, and becoming more and more lethargic . It was around that time that I found this site and I was encouraged to seek out an mpn specialist. I brought her my records, had a second BMB, an ultrasound, and tons of blood work, and she confirmed my suspicions that I had progressed to. Post ET MF. I went to her weekly for over 4 months and if my hemaglobin was below 10.2, I received an EPO injection. She kept me on Hydrea and put me on a new medication called fedratinib. My numbers stabilized in January and now I only see her every 2 months. My biggest fear is that eventually the medication will stop working and the disease will continue progressing. But I have great faith in my doctor and try to stay positive and focus on my work and my family, and friends. And, when I have the energy, walking and light exercise seem to help.
Has your doctor mentioned if fedratinib or similar, delay progression as far they work? A little bit confused.. what is her opinion about chances of progression?
Hi, Aneliv, Sorry it took me so long to get back to you. At my first appointment my doctor said I would probably need a SCT within the next 2 to 5 years. But, even she admits that there’s no way of knowing how quickly my disease will progress. The medicine is just to slow it down. But she did stabilize a lot of my numbers so I’m doing pretty well right now. And I’m hopeful that I’ll never need an SCT.
I hope to that you never need a SCT! I just wanted to ask you though if this is really a possibility. I mean if there is a chance drugs eliminate the need for SCT,
I’ve asked my doctor the same question and she just doesn’t know. I am always afraid the medicine will stop working, which is possible, and then I will get worse. One time I remember asking her about progression and she said, jokingly, “I’m not G-d”. I don’t think anyone can predict what will happen with this disease and everyone is different. So now I try not to worry about it. Whatever happens is going to happen. We’re just trying to slow it down with the meds.
I'm so glad to hear you are sorted out now in terms if diagnosis. How they can miss it I have no idea when even to us it seems an obvious thing to check for. And that's great about only having to go every two months. All encouragement for me too, which I need so much x
I have been helped a lot by the ruxalitanib my advice though is watch your weight. After years of being able to eat anything my weight crept up. I now need to be on a strict diet lots of love and encouragement
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