New to this but thought I would say hi and thank you to MPN voice for all that they are doing 😊.
I was diagnosed with MF in 2007 aged 43 following a routine blood test which revealed high platelets and then followed by a bmt which revealed scarring on the bone marrow . Treated initially with hydroxycarbamide and then anagrelide . Really struggled with the side effects of these and I was offered interferon. At this point I just stopped going to the hospital. I guess it frightened me and I just shut down- I felt fine had no other symptoms and at that point I didn’t have much information nor had anyone tried to explain anything to me.
Ten years later I had a bleed at the back of the left eye. The eye clinic noticed I had previous diagnosis of MF and immediately referred me back to haematology and said my eye issues were a direct result of the blood condition.
So back under haematologist currently just on watch and wait with aspirin. Platelets currently around 450 but I am experiencing fatigue and brain fog . My spleen is 14.6cm and I was recently referred to another haematologist for possible bmt but the other haematologist felt I was still lower risk end at the moment.
This time around I have been given so much more information- it’s overwhelming but at last I am coming to understand my condition.
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jacquelineruth2000
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The offer you had of interferon may have been worth trying. There are many posts here discussing it, you can search for PEG, Pegasys, Besremi and find many discussions.
The big picture is interferon (INF) for many MPN patients is the most effective therapy. For MF, if started early enough, it can sometimes reduce fibrosis in the marrow. It is not a chemotherapy as is Hydroxy for example. And some who cannot tolerate the chemo drugs do tolerate INF well.
It is worth revisiting the INF idea with your Dr. Also, is your Haem an MPN specialist? You should seek such advice. In UK we hear about Guys Hospital as a top source of MPN expertise.
MF is generally not a "low risk" category of MPN, it calls for careful monitoring of all your counts and conditions. That low risk description from your Dr requires more investigation.
I expect you will get some personal experience from other members here, including MF patients.
Hi EPguy, thank you for your reply to Jacqueline. Our understanding is that proper trials of INF in low risk MF are lacking and so robust claims of efficiency in this setting are difficult. Best wishes, Maz
Thanks for the clarifying. I agree there are no definitive results for such treatment.
Unfortunately that fits so much of what all of us are up against. Even the Besremi PV trials raised at least as any questions as they resolved. It leaves it to us with our Drs to make these educated decisions. The Voice is also a huge asset for us who try to learn from the real world, thanks so much for hosting this precious resource.
Hi EPguyThank you for your reply it’s much appreciated.
In hindsight I should have taken up the offer of interferon. I just shut down at that point and stopped going to appointments. The hydroxycarbamide sent me into menopause I’m sure it did and anagrelide made me so tired I couldn’t function. I guess I just ran away!
But hopefully the intervening years without treatment haven’t done too much damage to my bone marrow and going forward I continue to stay reasonably well.
I will check when I go back in July re a MPN specialist and keep you updated.
Please note the qualifier from Mazcd above. As with all of our decisions, there is rarely an entirely right or wrong solution, and it must be made in concert with our expert consultants. To Mazcd point, do you know your MF grade (and your mutation % and types)?
With your bleeding eye episode, that may suggest a higher risk condition of some sort and keeping up the appts is a good idea.
Mazcd's comment is a good reason to look a bit further into it.
In case it's helpful, here are some reports that your Dr may have had in mind, these and more are likely familiar to our MF members. But as Mazcd says, these are more for higher risk MF.
In this small trial ( <<Recombinant interferon-α administration induced a significant improvement of bone marrow fibrosis>>
This 2nd report is more extensive and focuses on broader treatment goals, but still most the benefits are for higher risk MF:
-See plots here. As I understand it, the MF patients who were able to stay on INF (the top dotted lines with "still ongoing") did better than those who did not /could not continue INF. But there are biases in this way to seeing it.
Right to Mazcd's point, this report notes that low risk MF saw less benefit than high risk: survival was <<8.9 versus 7.75 years for low risk, 5.42 versus 2.17 years for intermediate risk and 4.46 versus 1.08 years for high-risk>> So most benefit is for higher risk MF
This report also looks deeply into which mutations are present to help predict the INF response. One example <<additional mutations are more frequent in patients who could not remain on pegylated interferon therapy>>
In another note, while allele was reduced in some, <<We did not observe any difference of outcome (death or acute myeloid leukemia evolution) between patients whose JAK2 allele burden did or did not decrease.>> They note that allele reductions have been greater in Et and PV, but no reference to whether that helps for those conditions either.
If this report is used for guidance, my take is if you do decide to discuss INF with your Dr, you will want to know your specific mutations and MF risk category to best inform the decision.
Hi EPguy,My diagnosis is Primary Myleofibrosis with CAL-R mutation (52 base pair deletion). The bleeding eye condition was a left eye branch retinal vein occlusion which was treated with eyelea injections directly into the affected eye - I had 7 of them over the course of a year.
Thank you for the article link I will study it . There’s such a lot of knowledge to take in isn’t there? I did use to work for the nhs in medical records so I do have a bit of knowledge of terminology.
Thank you for taking the time to look things up for me it is much appreciated 😊
Some more interesting info on CALR, it has potential to be treated with immune therapy, such as CAR-T. This is only in trials for now. This thread discussed CART and CALR a bit (Jak2 will require additional agents for this procedure, discussed in other threads) :
<<The 2 most common mutations are a 52-bp deletion (L367fs*46) and a 5-bp insertion (K385fs*47), initially termed type 1 and type 2 mutations, respectively.9>>
<<A recently published meta-analysis and large collaborative study have confirmed that CALR type I but not type II mutations are associated with a superior overall survival>>
Just to clarify, MF can be considered low risk if the fibrosis isn't too extreme. Compared to the other MPNs, all MF is higher risk but risk varies among MF cases. For example, I am higher risk with Grade 3 fibrosis whereas Grade 1 would be lower risk.
Hello and welcome. Glad you found your way here. This is the right place to be.
Sorry to hear that you had trouble with hydroxycarbamide and anagrelide. The good news is that in the last 10 years there has been significant progress made in treatment for MF and the other MPNs. There are now options that were not available before, including new JAK inhibitors. The interferons you have been offered are more effective and easier to tolerate for some of us. I have done much better with the IFNs than I did with HU. You have several good choices available to you in regards to what you try next to treat the MF.
One of the most important things to do is to consult with a MPN Specialist. Most hematologists have little experience with MPNs. Here is a list.
Hi thank you for your help and really appreciate the information you sent. I have also replied to Maz below. I’m currently under both kings mill in Mansfield and Nottingham city hospitals . I had a look at the link of MPN specialists Nottingham city hospital is on there but the name listed is not the person I saw in January- hopefully it’s the same team. You are so right in saying educating yourself is critical. It’s helping me come to terms with everything I’m currently signed off work with anxiety and stress. Not all health related but the fatigue is definitely playing a role in my ability to keep working full time so I’m looking into cutting my hours down to help with the fatigue.
hello Jacqueline and welcome to our forum, so glad that you have found us and that this time you have more information to help you to understand and come to terms with your diagnosis. It is very daunting when you are told you have a MPN, and I do completely understand why you shut down.
and this explanation about the risk categories may help you:
Your haematologist may give you a prognostic score. These scores are divided into low, intermediate 1, intermediate 2 or high risk disease. As prognosis can vary significantly from patient to patient, it’s best to talk with your haematologist for information specific to your situation.
Hi Maz Thank you so much for the welcome 🤗. It’s so difficult to wade through the terminology and interpret what it all means isn’t it?
I’m currently under both my local haematology clinic at Kings Mill hospital in Nottinghamshire and now also Nottingham City hospital- the consultant I saw there in January was a Dr Wadelin.
She reviewed me and asked lots of questions about my understanding of my condition etc. I also had bloods done and we discussed a further bone marrow sample when I’m ready it’s up to me. I had one done way back in 2007 but not since.
My diagnosis is primary Myleofibrosis with CAL-R mutation (52 base pair deletion) . Dr Wadelin explained that on a scale of 1 to 4 I was more near to a 1 and classified as at the lower end with the information she had available and she said I didn’t require cytoreductive treatment at present but when I reach 60 ( in 2 years) then she would want me on something.
I am considering the bone marrow sample as obviously that will give a better picture of the fibrosis they have offered me gas and air to help last time it was so painful!
I have also been watching the videos on your you tube channels which are very informative thank you for all that you are doing
Hi Jackie, and welcome to our friendly, supportive forum.
Just to say, I would endorse that request for a bmb, as there seems to be some ‘changes’ both in your counts and presumably your symptoms.
The good thing is you’ve had a bmb before so comparisons can be made. Additionally, the findings may indicate that it’s advisable to start medication now for instance rather than wait two years.
The other thing is, I’m not sure all haematologists on that list are MPN Specialists. That’s not to say they haven't participated in MPN research/clinical trials etc. or likewise, they may have a ‘Specialist interest’ in MPNs as part of being a general haematologist. You can always ask this relevant question at your next appointment.
As you probably know, Professor Claire Harrison at Guys in London is an MPN Specialist. You could ask for a referral to the team for a ‘second opinion’ or opt for ‘shared care’ between the team and your local haematologist, something which I have done recently.
Hi mhos61Thank you for your reply 😊 it’s really good of you to respond. I will make a list of questions to ask and make copious notes. It’s so good to talk with you all on here and I have learned so much already. It’s certainly helping me with my understanding of my condition
Welcome to this great informative site. Although I cannot offer any comments on your situation as my condition is different, you will find a great deal of help and support here and hope very much many of the comments will be of reassurance to you.
Hi OscarsboyThank you for your reply and it’s very much appreciated. It’s so lovely to hear from folk in a similar situation and not feel quite so isolated.
Glad you found this forum. Full of helpful people with lots of information to help. I understand the running away bit. Very easy when you feel ok. It’s not as frightening as it sounds and you are now on the way to getting all the info you need to make informed decisions on any treatment you may take up. Thanks for sharing with us as keep us posted on how you get on
Hi & Welcome.You have had some great responses thus far and all I can add is that I find interferon easy to tolerate. It’s been magical in performance for me so may be worth asking about again. If we’re careful we’ll be fine in managing our conditions and the people on this site are nothing short of amazing in knowledge, advice & experience. Once again a huge HELLO from me x
Hi Threelions Thank you for your reply and the reassurance. I will let you know how I get on 😊. My platelets luckily seem to be pretty stable at the moment and I’m just getting over having had covid for the first time. I do feel really fatigued but not sure whether it’s the MF or the Myleofibrosis!
Welcome, you were young when first diagnosed. Take the interferon it’s amazing and really painless to take. I numb the site with an ice pack first. Just realise though not all can cope with it. Drugs for MF have moved forward a lot. I have ET So my situation is different. I’m sure you will get plenty of help from others. Good luck
Thank you Wyebird 😊 I will definitely discuss when I go to see the haematologist at Nottingham city in July. Yes I was young I guess although I can see from here there are patients who are a lot younger. It’s so good to have this conversation.Thank you again
, This disease is definitely difficult to understand. Everyone seems to be in a different situation. I have post ET MF intermediate 1 but with grade 2 fibrosis. My platelets are also high, but in the 700’s to 800’s. . My doctor explains that once they start dropping to an unsafe level, that’s when I’ll be at higher risk. Right now I just take 1000 mg hydroxyurea and baby aspirin. She wants to increase my medication to lower my platelets, but I can’t stand the side effects. I was on anagrelide a couple times over the years and I agree with you that that medicine causes the most side effects of all. I’ve never done the interferon.I don’t know if this was helpful. Just giving you my experience. Wishing you all the best.
Hi Cja1956Thank you for your reply any advice is really helpful as I go forward 😊.
When I was initially diagnosed my platelets were 800-900 but over the last 2 years they have been around 500ish most recently 459 in January. I’m not on any cytoreductive meds currently just baby aspirin so not sure why they are dropping although I am becoming more anaemic according to my local haematologist at kings mill.
I have asked to be seen at Nottingham going forwards but will still see kings mill yearly and I have developed a good relationship with the haematology nurse at kings mill too. She is trying to set up a local patient support group too.
Lovely to hear from you and wishing you all the best too.
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