What to do ….

[lizzziep]

Warning - long post! I’m not sure what I’m really asking here, or if I’m just looking for a sounding board.

At my appointment last month my haematologist told me my ET had now changed to MF, after a bmb and NSG testing. He also said I had markers for high risk for leukaemia. I didn’t ask what the markers were, I’ll do that next week. He said it would probably be several years before this happened.

Since then I have asked to be referred to Professor Harrison at Guys, still waiting to hear about that.

However,obviously, I have found this very worrying. Having read other people’s stories I know that changes could happen sooner rather than later. After a lot of churning over in my mind I have decided to ask about SCT.

I know this is a major undertaking, providing a suitable donor could be found. But as I was 70 in April I don’t know if I’m too old for this procedure. I don’t have any other illnesses apart from arthritis. Has anyone of a similar age had this?

I have started on peg interferon, I had my 4th injection yesterday, I’m on 45 mcg at the moment, I was very wary about the drug however I have been mostly ok. I’m going to the toilet more often 💩 and the first week I was quite nauseous but that has settled down. Actually I seem to have had more energy and my arthritic knees feel slightly better, but that could be adrenaline as I am worried about my future. I’m also still taking one Anagrelide capsule per day, and aspirin.

So far I have very few MF symptoms , apart from the fibrosis, which he said the Anagrelide I’ve been on for several years could have contributed to. I’m also on EPO injections because I was extremely anaemic for a long time despite iron infusions etc. I do feel the pandemic has also contributed to not having bmb etc sooner as it was only in March this year I had a face to face appointment - since January 2020. I was having blood tests every 3 months and a phone call from a specialist nurse.

I would appreciate views and input from others with MF with high risk markers and what they have been told.

Thank you in advance.

[hunter5582]

Sorry to hear about the progression. It certainly is worrisome news. Did the doc say what stage the MF is in? You definitely need to know what AML markers the doc was talking about. It may be your level of blasts, but you need to know for sure.

It is definitely a good idea to get a second opinion from Dr. Harrison or another MPN Specialist. They can best advise on whether a SCT is an option for you. There are also other options to treat the anemia should that be needed. Hopefully momelotinib will be available soon. That will be a significant step forward for people with MF w/ anemia.

I hope you find the PEG suits you as well as it suited me. It was more effective and easier to tolerate for treating PV than any other treatment option I tried. I have now moved on to Besremi. The IFNs have improved my quality of life and reduced my JAK2 allele burden from 38% to 9%.

Wishing you all the best and success in the next stage of your journey.

[lizzziep in reply to hunter5582]

Thank you 😊

[Scaredy_cat]

I had a sct in Bristol in January when I had my 70th birthday. I'd progressed from et to mf about 18 months before. My mpn consultant pushed for a sct. I had to have a lot tests beforehand on my heart, lungs etc and I don't have any comorbidities like diabetes. So your age on its own needn't be a bar

[lizzziep in reply to Scaredy_cat]

Thank you, that’s good to know, can I ask how long you were in hospital please? 😊

[Scaredy_cat in reply to lizzziep]

Typically people are in c 3 weeks. I was nearer 6 because I had psychological problems with eating

[lizzziep in reply to Scaredy_cat]

Thank you 😊

[Otterfield in reply to lizzziep]

I was told it would be 4 - 6 weeks. For me it was 7, but it takes longer for blood counts to recover if the original disease is MF, because the fibrosis sort of gets in the way of the new cells establishing themselves.

[lizzziep in reply to Otterfield]

Thank you 😊

[katiewalsh]

Hi Lizzie, if I recall right your treating doctor isn’t a MPN specialist which is why you’re planning to go to see Claire Harrison. I strongly encourage you to put all thoughts about a transplant aside for now. It didn’t sound like your doctor is at all knowledgable so his or her statement about high risk factors for advanced leukemia may be completely wrong. That’s just my opinion. Wait until you see the experts at Guys. But I encourage you to try & find out what has happened to your request to see them. Maybe it got lost or can be sped up. I’m sorry you’re going through this & understand it’s worrisome. But it may turn out that Guys tells you this other doctor is totally wrong. Sending big ehug. Katie

[lizzziep]

Thank you. I’m seeing the doctor on Tuesday and will be asking about Professor Harrison. I’ll also ask what the markers are that he referred to. Hopefully will find out my case has already been referred to Guys, I got in touch with them 2 or 3 weeks ago to ask what to do to get them involved and they said to ask consultant to contact them which I did. I’m very much up in the air at the moment not having the full facts so can’t make proper decisions, it will be good to get other opinions.

[Andrew8]

I was diagnosed with ET in 2016, changed to M F in 2017 after2nd BMB, been on Jakavi since, which seems to have stabilised. I'm 75 now so transplant seems out of the question. Of course imune system is compromised so got Sepsis last year, so be aware of that risk. On Jakavi bit of a risk of skin cancers.

[lizzziep in reply to Andrew8]

Thank you. Were you told you had any high risk markers? It’s those that worry me most. As I’m 70 not sure if I’m already too old for transplant.

[Otterfield in reply to lizzziep]

No you are not too old. Another member on here has recently had a transplant at 70. It's not so much about age but about whether you have any other conditions which would create extra risks. Prof Harrison will be very helpful in giving advice on this.

[lizzziep in reply to Otterfield]

Thank you. I have arthritis and am overweight but otherwise ok.

[Otterfield in reply to lizzziep]

I was advised to gain weight before the treatment started because we lose it while in hospital, so that may be an advantage. I would assume that arthritis is not relevant.

[lizzziep in reply to Otterfield]

Thank you - if gaining weight was an Olympic sport I would be a gold medalist! It’s losing it that’s difficult for me.

[Otterfield in reply to lizzziep]

Believe me, an SCT would make you lose weight! But I am NOT recommending it as a weight loss strategy! 😁

[lizzziep in reply to Otterfield]

It is rather a drastic measure! 😁