Blood cancer

[Superseededsunshine]

i was diagnosed at the end of December 2024 with essential thrombocythaemia (ET) with jak2. Following a bmb I was told it was progressing and I have pre fibrotic myleofibrosis. I have been taking hydroxycarbamide and am under the care of the haematology team.
I have searched the topics but can’t find any threads about this so I wondered if anyone else is struggling with this as it would be great to see how it’s going for others?

Sorry to hear that OP. Maybe someone will come along who might be able to help you. In the meantime there is a specific cancer board here where it might be worth posting your questions also.

My dad was diagnosed 4/5 years ago with ET jak2. He also takes hydroxycarbamide with 8 weekly bloods and telephone consultations he copes well. He’s 90 and they said it wouldn’t affect his lifespan.
He is active and enjoys life. Apart from being pale at times he has no other symptoms.
We were given lots of information including a huge booklet which we can refer to when necessary.
sorry I can’t be more helpful but I hope you find this reassuring.

Thanks both. I do have all the booklets, just find it such a lot to understand!

A relative has ET. She sees haematology every other month, along with regular blood tests and medication. She’s fine and she’s had it for decades. I appreciate that’s probably not very helpful. I hope you get the information and support you need.

Thank you. I was ok when I had the ET, it’s the progression I would really like to find out about as the haematologist is not really telling me much. Il keep searching.

Hello. My husband has ET. His was picked up from a routine blood test. At the moment he is well on hydroxycarbomide, and has regular blood tests and phone calls with a consultant.
I scoured MN for threads about this too.
I am sorry to hear that yours has progressed.
There is lots of information out there but it seems to be quite vague. Are you newly on the hydroxycarbomide, since the myleofibrosis diagnosis?
DH's platelets are down but his spleen is swollen and he's put on quite a lot of weight. It worries me that he's only had phone consultations and not actually been seen for nearly two years.
I hope you are able to find answers. Best wishes for your future well being.

@Fleetoffoot Thank you so much. I was put on the Hydroxycarbamide when I was first diagnosed. It took me a long time to get the diagnosis as I had been unwell for a while. My research suggests that there are better drugs to help with the progression but my haematologist just said no without really an explanation.
the swollen spleen is really an issue, does it make sitting uncomfortable/painfull for your husband?

Hello,

I don’t have ET but another type of blood cancer. I’ve found Health Unlocked website quite helpful for information and just had a look to see if there is a group for ET for you.

https://healthunlocked.com/mpnvoice

I'm sorry to hear you've had this diagnosis. Blood cancer is a rotter.

DH was diagnosed with a rare blood cancer a few years ago- his platelets were consistently below 10 and other blood cells all to pot. He had an allo stem cell transplant and after a couple of years of treatment he's been in remission ever since. And I know treatments have come on since then.

Wishing you all the best.

Thank you all for your good wishes!

My husband seems to suffer more from a bit of back pain, and the consultant told him to see his doctor about that rather than it being something for them to look into. He's concerned that it's affecting his kidneys but he's finding it hard to get an appointment with the GP.
He's a big chap anyway but his abdomen feels hard. He does get tired and a bit breathless but it could be due to being overweight. It's a pity that the health system works on individual symtoms rather than how the medication and the conditions work together in a way that impacts the whole body.
I'm just wondering if there is a support group on Facebook. It might be worth a look. I've only just thought of it. Are you on there? Sometimes you get more info from other patients who have been researching.

Is your spleen causing you issues too?
Ed to say sorry, i reread your post and I see that it is troubling you. Where to you feel the pain from it?

I'm going to go and have a look on fb now.
I hope you are feeling ok today. It's worrying when you feel abandoned without and information isn't it?

Hello again @Superseededsunshine I just put blood cancer in as a search term on FB and several groups came up. All are private and I've just requested to join one. It will we interesting to see what information they share. Blood cancer uncensored support was the one I picked.

@Fleetoffooti only just noticed your reply so thanks I wasn’t ignoring you! I have joined a few facebook groups and whilst they can be informative they can also be quite worrying as there are such a range of symptoms!
I agree with you about the the healthcare all working individually as the GP tends to have no knowledge of the disease and if I raise it with them they will say speak to the haematologist but the haematologist will invariably refer me back to the GP.
My spleen pain is on my left side just about where my ribs,I was told it was enlarged but also at one point I was told it has a small aneurysm in it.
I know everyone says stay positive and obviously many people seem able to live a long and normal life with these conditions. I just feel if I could improve my present quality of life this would be more manageable.
i am also looking into the MPN voice that @Yosemitetulipsuggested so thanks for that.

Hello @Superseededsunshine no need to apologise. I only just posted!
Yes, that makes sense about the fb groups.
There are some good long running threads on MN about other conditions, so maybe if we try to keep your thread active, other people searching for essential thrombocythemia or myelofibrosis might find us and join in. The health threads on here often seem much calmer.

I am sorry you are feeling so unwell. DH is very stoic and isn't the sort to complain, so it's hard to know how he's really feeling. I worry about him but he just says don't, but he's much less active and seems a bit depressed sometimes. I'm trying to cook healthier for him but I can't stop him overdoing junk food, and I don't push him to exercise but he'll sometimes walk with me.
How old are you?We are in our sixties.

I am 70 and sometimes I wonder if I expect to much because I can almost hear the ‘At your age’ at the end of every sentence along with the oh so familiar comments about my weight! The thing is until this I was healthy and active, despite being old and fat! I feel my world has really shrunk now as the fatigue is really limiting me even whilst I know it’s important to stay active so I do try to walk everyday.
sometimes I think I should just accept it and just stop searching for information as in the end it does confuse me a lot.
its really good to read your replies.

I am sorry I can't be more helpful with information, but from my point of view it's useful to hear how it is making you feel. I think DH is probably feeling the same. It's like he's old before his time.
His gp tells him off about his weight too, so he doesn't want to go. It's probably hard to give up sweet things and go and exercise when you're feeling fatigued. Probably if the sugar went, he'd me more inclined to do some exercise. I'm not sure how much is caused by the condition, or the medication, or being big. He doesn't go looking for information like you (and I) do. It's hard to know what is best, but knowing it's progressing must be very worrying. Sending my best wishes to you.

I'm making him sound huge! He's not that enormous but his face is fatter now, which has come about since he's been on the medication. So it might be that.

Yes I do think the medication has caused weight gain but in my case I’m not using that as I love my food! A lot of people suggest changing diet so maybe I’m going to have to really look into that but honestly, a little part of my brain says aren’t I miserable enough already!

His brain is saying that too I think! My sympathies to both of you

Hello - just wanted to reach out as I also have Myelofibrosis. There are some active support groups on Facebook as well as one on Healthunlocked - are you tapped in to a community yet? I’ve got grade 2-3 fibrosis and live a pretty normal life. Get a bit tired but I’m still active. No meds as the likelihood that any medication would have worse side effects than my current symptom burden. I’m a bit younger though (early 50’s).

Hello@cloudfree. I do dip into some of the Facebook groups.

i haven’t heard of healthunlocked I will have a look, thank you .
i do wonder if the medication is actually making me worse and if it’s really worth it ,but it’s a difficult decision to stop taking it.

My husband was diagnosed with ET 25 years ago and three years ago was told he had mmyelofibrosis. Not long afterwards his blood counts weren't so good so they changed him onto Jakavi (Ruxolitinib). They had to have a special meeting to get permission to prescribe this drug as it's incredibly expensive.
He has stayed very well on this medication and is very lucky to live close to a good haematology unit which monitors his condition closely.
Rux is a fairly new drug (2012) I think and is getting very good results, I believe. It suits him well so far. There are other new drugs in the pipeline as well so don't despair - life can go on quite happily with this disease.
Many best wishes to you and the other people on this thread.

That's so interesting @CopperOriole I am pleeased your husband is doing well.
How are you @Superseededsunshine ?

Good morning thanks for the new comments. I am still plodding on with the 3 monthly blood checks. I find the results all so variable with so many things ‘out of range’. I also seem to speak to a different haematologist at every appointment and it becomes confusing as some say the symptoms I have are not related and some say they are! I find it frustrating that there are no clear answers, but again, maybe I just have to accept that and get on with it!
hope your husband is doing ok @Fleetoffoot