New member intro, diagnosed with MF in 1996

[Simon96]

Hi All, new member intro, diagnosed with MF in 1996, jak2+, currently on hydroxycarbamide (hydrea) and aspirin. Doing well.

[jane13]

good to hear from u

[Simon96 in reply to jane13]

Thanks Jane. And thanks to everyone who has welcomed me to the forum.

[eire]

Wow - that's fantastic. Imagine MF diagnosis and doing so well 21years on. I was diagnosed 8 years ago but struggling now. Very best to you and welcome to the forum.

[MFBMT2011]

Welcome. That's a long time. Some questions if I may. How long have you been on Hydrea? Do you have transfusions? Are you asymptomatic?

Chris

[Simon96 in reply to MFBMT2011]

Hi Chris, I have been on Hydrea for more than 15 years. My condition improved on taking Hydrea and stayed that way for a long time - spleen reduced in size, slightly low haemoglobin count increased and high platelet count reduced. My experience with Hydrea is that it has been easy to take and I have not observed any adverse side effects. I am careful with sun exposure. No need for transfusions so far. Asymptomatic is a big word. I am still at the stage where if you meet me in the street you would not be aware that I had any health issues, however I do have a number of minor symptoms which are typical for someone living with MF.

[Norman45]

Your 21 years must give hope to everyone with MF. With new treatments like Ruxolitinib there's a possibility of a near normal life span which pleases me after five years of ET and the past year with MF.

Good luck for the future.

[Mazcd Partner MPNVoice]

Hi Simon, welcome to our forum, glad to hear that you are doing well. Best wishes, Maz

[daisystar]

OMG, Simon, how have you managed that? Good on you. Any advice for the rest of us? What stage were you diagnosed at? Forgive all the questions but your story is quite extraordinary and I am dying to know (forgive the pun too). X

[Simon96 in reply to daisystar]

Sorry I do not have any magical advice. I decided early on that there is no point in stressing about things that I cannot know in advance or change. I think we are very lucky to being living in the age of the internet where we can see the research going on and read the research papers.

[Betsywest]

Hi there! Welcome & your post will certainly give all those with MF a boost. Best wishes

[linds]

This is just the sort of post we love to read. I have MF and take Rux and have every intention of beating my parents who both lived to their 90's. Thank you for giving us such a lift.

Best wishes,

Linda

[pj1963]

Yes, as a fellow MF suffer, I'm also full of questions! At what stage were you diagnosed? How do you feel? Can I ask how old you are? And you're not on Ruxolitinib?

Paula

[Simon96 in reply to pj1963]

Hi Paula, I am uncertain what you mean by stage. I believe the fibrosis in my marrow was quite extensive at the time of diagnosis and I had an enlarged spleen. I was 35 at that time and was in good health. I felt that something was not quite right, had a routine blood test and it revealed a high platelet count. I am not from the UK. We have a similar system to the UK's NHS however Ruxolitinib is not funded here.

[Fika500]

Wow! That gives people with MF a lot of hope. Well done! I too would love to know more. At what age were you diagnosed? Have you needed any other treatment besides the hydrea? Do you get fatigued? What is your quality of life? Thank you for sharing.

[Simon96 in reply to Fika500]

Hi Joe,

Thanks for your reply. When I received it in my email, I thought you would be a lot younger and more recently diagnosed than you are! Being new to the forum I did not think to check anyone's profile before replying. Too busy getting my head around what to write. Below is that I spent the day writing for 'younger' Joe...

I was 35. My treatment has been more along the lines of management than need.

Back in 1996 when I was diagnosed there was a lot of controversy about the safety of some of the treatments at that time, including concern about Hydrea. In preparation for my diagnose appointment I had looked into a few conditions that I thought I might have, including ET. I was stunned to learn I had MF. Hydrea was prescribed. I scrambled to remember what I had incidentally read about MF and the concerns about Hydrea. My haematologist assured me that the risks with Hydrea were low. When my wife kindly took the Hydrea prescription to our local pharmacy, the pharmacist raised concerns and even went as far as printing off the information he had about Hydrea for me to review before filling the prescription. I decided to delay treatment and to take a wait and see approach.

In 1998 my spleen was growing. My haematologist advised that action was prudent. I had been following the writings of a couple of doctors in the US who were recommending interferon for early MF patients. I self funded interferon for six months but stopped due to difficulties with being on interferon combined with difficulties on the home front. I had hoped to retry interferon however my family circumstances prevented that.

The time that I really felt the need for treatment was when I had spells of intense itching, particular in the middle of night. My heart goes out to anyone experiencing itching. It is horrible. The treatments I tried were unsuccessful for me. I do not know what brought on the intense itching, nor why it stopped. It lasted a month or two. Fortunately it has not returned.

A while after that I had another couple of horrible months where I constantly felt unwell and had pain in my abdomen. It felt like my belly button was going to get ripped off. I was taking pain killers before going to work and again at lunchtime. Fortunately that too passed.

In 2000, I had a change of haematologist who recommended that I take Hydrea, like my previous haematologist did. Research out of Australia was also advocating early Hydrea treatment. I reluctantly agreed and have been on Hydrea since.

Apart from those few months that were quite bizarre and horrible, I have had 20+ years of amazingly good health.

I consider my quality of life to be normal. Through a bit of trial and error I have adapted what I do to suit my lifestyle. It has been such a long time that what seems normal to me now might not seem normal to you. For example, I still get mild itching after I take a shower, showering in the middle of the day works best for me. I tend to get tired in hot humid weather, so I schedule physical tasks for cooler times. Having a large spleen causes some tasks to be uncomfortable if I do them for too long so I break them up into multiple small tasks. I pace my activities.

It may sound counter intuitive, but sometimes I can feel tired when I have done too little.

One thing that I observed early on was that MPD'ers who appeared to be less stressed seemed to do better. That might just have been wishful thinking on my part. After abandoning my experiment with interferon, I wondered what to try next and decided to extend the less stress idea to the physical by changing to a low impact exercise regime. I cut out things like running, squash, aerobics. These days I enjoy hill walks and taking in the scenery. I am no where near as fit as I would expect a person of my age to be however I am still doing very well. It was probably a crazy idea, but it is what I did.

Hopefully you can come up with some crazy ideas of your own and tweak your lifestyle to suit you. Best wishes for your journey.

[Fika500]

Simon thank you so much for all those details and sorry for late reply. I've been away on holiday. There is a lot of info to process from you and I am very grateful. I think I've done well for so long because I don't get stressed and do gentle exercise- mainly walking. I do wonder about prognosis - my platelets were down to 68 in April and wcc was about 24 but on no active treatment. Had been quite fatigued but have improved over last few weeks. I think exercise helps but I have to pace myself and accept limitations. I need to nap each day for a few hours. My spleen was 23 cm over two years ago- I find bending uncomfortable but eating is fine.

I had PRV for 27 years & venesection every six weeks. I suffered itch, mainly after showering but took nothing for it. Have had acne rosacea for many years and take regular antibiotics for it. A few years ago the need for venesection diminished as my hematocrit was okay but then it was determined that I had probable Myelofibrosis. I developed painful gout and now take allopurinol for that.

My wife holds her breath as the next blood test approaches. I'm on three monthly watchful waiting at the moment.