I was shocked when the doctor told me. Apparently I have had it since my first heart op 20 odd years ago. They did all sorts of tests because my platelets were low. But at the time I was told not cancer. I was given several tranfufions before my bypass then just sent on my way. Why was MY not spotted then when they took some bone marrow ?
The fatiue started getting chronic a couple of years ago. But this year it has got so much worse if I do anything I feel as if I just ran a marathon. They have said I am annimic and will need a blood transfusion when it gets a bit worse. This is so unfair. Also does MF qualify me for hospital transport.
Fatigue is unavoidable I’m afraid,when they tested my blood for the first time my Haemoglobin was 76, a normal reading is around 150/170. I expect You’ll be having weekly transfusions as the nature of the disease means your blood count won’t hold.I can’t say for certain,but I would have thought you’d be eligible for PT as walking any distance is incredibly hard.
Welcome to the forum and thank you for taking time to send in your post.
My heart goes out to you as I also experience fatigue as a Chronic lymphocytic leukaemia ('CLL') patient on active monitoring
Often, in the afternoon, I will take a 30 minute to an hour nap, that thankfully does not impact my night sleep. Initially I found the lack of energy very frustrating, but I’ve come to accept it and try to include quality rest time into my every day. We are all on this journey, you are not alone, and I hope you keep in touch and let us know how you get on
I was diagnosed with Myelofibrosis in October 2023.
Firstly no idea why not picked up all those years ago. It may be that what can be picked up now is different to back then.
Low red blood cells/haemoglobin very common which in turn contributes to tiredness.
Normal range for haemoglobin is between 130 and 170 for men and 120 to 150 for women.
I was regularly in the 80 and 90s range.
Once fell below 80 usually got a couple of bags of blood.
They also had me on EPO injections to try and keep bloods at reasonable level. Worked well for about 6 months.
I was fortunate to be offered a Bone Marrow Transplant from an anonymous donor. Transplant took place in April 2025.
In terms of transport definitely worth speaking to your clinical team and cancer support worker at clinic if they have one.
It’s also worth speaking to a Macmillan Benefits Advisor. They can make sure that you get the support available financially.
It may be that PIP or Adult Disability Payment which we have in Scotland is an option. This benefit isn’t means tested and doesn’t count as income for tax purposes either.
Hello there @alex2, welcome to the forum. I’m really sorry to read of your Myelofibrosis (‘MF’) diagnosis and that difficult fatigue. Perhaps you’d like to read the great Blood Cancer UK information about MF: Myelofibrosis (MF) | Blood Cancer UK
While I’m not a doctor, I do live with a related type of blood disorder called Polycythaemia vera ('PV'). Polycythaemia vera ('PV') and MF are rare types of blood cancer called Myeloproliferative neoplasms ('MPN'), here’s further information about them: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
As for you not being told that MF is a type of blood cancer, you are not alone in this. At diagnosis in 2023 I was told Polycythaemia vera ('PV') was not blood cancer but I soon learned that my (former) haematologist was just very outdated in his understanding.
Earlier in the 2000s Myeloproliferative neoplasms ('MPN') such as MF were reclassified by WHO and other health organisations as types of blood cancer. It may be that you were diagnosed before MF was considered a cancer.
I’m really sorry to read of that nasty fatigue, I know it well. Hopefully you can ask for treatment for your anaemia, which others around the forum have said can help their energy levels. It might be that you can ask for iron infusions at hospital, might be worth passing your fatigue by your specialists.
Hope that helps a little @alex2, do have a look around the forum as you’ll find many others living with fatigue sharing ways to manage it.
My Haematologist’s started by saying you dont have cancer. But she did give me the booklet on MF which explains it is. She did admit that she does not know a lot and will be running all my blood count results by a MF specialist who is 40 miles away. She said I will problem meet him in person in the future. when I was diagnosed my blood was 93. She said we will monitor you until you reach the criteria for a transfusion. My wife did ask if Im annimic why are you not prescribing iron tablets. Doc explained sadly it’s not that simple because its the bone marrow itself that is damaged and cant keep up with demand. Being told I have to wait until I am worse is daunting, we both wondered how much worse it can get. I am sleeping an average of 6 hours a day, then 6 hours at night. I have never felt so ill in my life.
Thank you everyone for your replies and support.
@alex2 I was diagnosed with MF in 2023 which had progressed from Polycthemia Vera which I was diagnosed in 1999.
Have they told you which risk group you are in, I am in intermediate risk group 1.
At diagnosis I had amenia, enlarged spleen and severe fatigue amongst other symptoms.
I have never had to have a blood transfusion and have been treated under a clinical trial with Fedratinib and Besremi. It has worked for me and I feel 100% better compared to when I was diagnosed. I am seen by a Myeloproliferative neoplasms ('MPN') specialist which I think is essential.
Well it May now. I am so frustrated. Fatiue is now making me sleep most of the day. and then after difficulty to fall asleep I still sleep at night. I was my wife’s full time career due to her mobility issues. She is doing her best to cope with running a house and our appointments etc.
My last review I was told that I am still dropping in my blood count but still not low enough to warrant an infusion. The haematology gave me a very confused meeting. My wife wrote to her when I tried to recall what was said. She wrote back that she was talking about its mutation being extremely rare. But she would give details of which one I have. She did say they are thinking about putting me on injections. Since I am diabetic she can let me do it myself after it has been demonstrated to me. However because I still have the runs she wants the bum doc to do a scan of my bowls and intestine. That took ages until I met him. He could not understand why Haematologist’s wont let me start the injections or any treatment until after the scan and was going to write to her advising that treatment starts right away,
The scan will be difficult I have had it a few times. It’s taking the prep that I am worrying about. I also have some sort of hernia pocket in the way to my stomach and it fills with what I swallow then sends it back up. That has been worse lately. I throw up twice a day. I can only sip water no matter how dehydrated I am or it just comes back up with such force it comes out my nose and occasionally Im sure it comes out my eyes. So I am worried that I wont keep the prep down. Bum doc said we need to treat that. I had botec injections before and the improvement was only that I drank water but food was just as difficult. I went back to my GP and he just said shame it did not work but did not refair me for more invasive treatment. I feel like I am in a never ending pass the parcel and it is all delaying my treatment.
Meanwhile I am only awake a few hours at a time. When will this end. I was ok when first diagnosed but am getting more worried about the future as time goes on.
So sorry to read your update. Your condition sounds as if it is getting worse but obviously I’m not medically qualified.
I would however suggest you go back to your Haematology Team. I was told when diagnosed to flag up any change as soon as possible.
The injections you mention could be Azacitidine as you have a Myelofibrosis diagnosis.
I think it might be best to speak to one of the Blood Cancer Nurses to get some guidance on how best to share concerns with your Haematology Team. I’ve tagged the Blood Cancer Support Team and the Blood Cancer Nurses below.
Oh @alex2 this sounds horrible, being so ill and struggling to keep medicine and fluids down can’t be good for you.
I second @DuncanB suggesting you speak with the Blood Cancer UK nurses, they’ll be able to suggest next steps so you can chivvy along treatment for those symptoms and keep your strength up. Do consider giving the BCUK specialists a free call on 0808 2080 888.
I’d also urge you to speak with your specialists and explain just how sick you are and how fatigued you’ve been. They may not realise how disabling the fatigue has been, and they need to know their treatment is causing your diarrhoea and vomiting.
Please let us know how you get on and do consider calling the BCUK nurses @alex2.
We are so sorry to hear about your diagnosis of MF and the symptoms you are experiencing. We can imagine this is a very difficult time for you and your family.
As both @DuncanB & @Duncan have suggested, we would strongly advise informing your haematology team/ clinical nurse specialist as soon as possible, or if you have been given a number for the triage service for the oncology/ haematology department to call this as soon as your can. It is important to update the team on how you are feeling so that they can support you as best they can and may need to review/ assess your swallowing issues, fatigue, diarrhoea and vomiting. This is important as diarrhoea and vomiting can cause dehydration and if you are unable to swallow and keep things down this can lead to further dehydration.
In terms of anaemia and transfusions, you should be able to speak to your haematology consultant about this. Transfusions are assessed on an individual basis, but they should be able to advise of a number where they would expect your haemoglobin to be and at what number they would advise of a transfusion. They also take into consideration if you are symptomatic of this anaemia which would be symptoms such as breathlessness and fatigue.
Fatigue can be caused from anaemia or from MF itself and is a common symptom. However, the fatigue you are experiencing sounds like it is debilitating for you and so, as mentioned would strongly advise reiterating this to your team.
