I'm new here! This is my Story...

[Actuallyclaire]

Good evening all, My name is Claire and I am 22 years old.

Last week I was diagnosed with Idiopathic Myelofibrosis. I am Jak 2 negative. Ever since I was 16 my platelets were increasing at an alarming rate and just now did my doctor figure out why. I had my first ever bone marrow biopsy done just last month and my family and I were very surprised by the results as my hematologist thought it would just confirm her previous diagnosis of Essential Thrombosis. I am still waiting on the genetics results to find out how immediate or distant I will need a bone marrow transplant. Last week I went from 500mg of Hydrea to 1000mg Monday, Wednesday and Friday and 500mg Sunday, Tuesday, Thursday and Saturday.

My doctor suggested that I freeze some embryos and I wont be able to have a normal pregnancy because of this disease.

I have so many questions, and concerns about this disease like is it actually cancer? Or is it just a disease? Also I'm beside myself at the fact that I wont be able to get pregnant and have a baby and a normal family. I just feel so sad about all of this. I don't know how to cope or where to even start.

[Simon96]

Hi Claire, glad you found this group, sorry that you needed to. While most of the people here are much older than you, there are quite a few who are your age. This is a great place for information and support.

Ideopathic Myelofibrosis is more commonly called Primary Myelofibrosis (PMF) these days. It has been called a variety of names over the years. Myelofibrosis can also develop after a period of time from related conditions such as Essential Thrombocythemia (ET). Early PMF and ET can look very similar which is the reason for the bone marrow biopsy. By calling it Ideopathic Myelofibrosis your doctor is saying that she believes it was always Myelofibrosis, not ET.

Myelofibrosis used to be called a disorder. The World Health Organisation reclassified it to being a cancer. Some doctors still like to say it is not a cancer, possibly because of the dreaded thoughts some patients have when they hear the word cancer.

I was diagnosed with PMF at age 35. That was 22 years ago, around about the time you were born. Being a typical male I had avoided doctors and blood tests during my teens and twenties so do not know when I really developed Myelofibrosis.

It is a shock to get any diagnosis, especially when you are young. The best tip I can give you is to take some time to get know the new you.

Also the understanding and treatment of Myelofibrosis is changing very rapidly. I think that by the time you get to my stage, bone marrow transplantation will be a distant memory of treatments that oldies like me used to have. Your age is very much on your side.

Hopefully some of the younger females will also reply to share their experiences with you.

Best of luck and keep asking questions. Cheers Simon (from New Zealand)

[katiewalsh]

Dear Claire, you must be very worried. I think all of us were at first until we realized that our lives weren’t about to end. But it must be especially difficult being so young & wanting to have babies. Do you have a really good MPN specialist? That’s really the most important thing for you to have. Where do you live? There are actually some good things you can do for yourself right now, drink at least 2 liters of caffeine free fluid daily, eat a healthy diet & get regular exercise. They’ve found that Yoga is very helpful to reduce stress so find something to reduce your stress. Some of us have benefited from counseling to help us deal with fear/depression. And a number of us take medications to help with that. You’ll feel better if you can get good sleep. If you ask Maz, she can hook you up with a Buddy which is someone with whom you can have more frequent contact and understands what you’re experiencing. To answer your question, these are cancers but not typical cancers. They are not aggressive cancers like most we’re familiar with. And as Simon said, the outlook for Myelofibrosis is completely different today from what it used to be. That seems to be the MPN which has the biggest advances being made. People here are very supportive and caring. It’s a good place to ask questions and also, if needed, freak out. You can ask for some moral support when you’re having a hard day or complain if you’re frustrated. Don’t do research on google, too much is inaccurate. Go on MPN Voice or MPN Research Foundation for information if you want to read about this disease. And Maz can send you brochures. But you don’t have to do any reading. Try & take things a day at a time right now & know that you have lots of new friends on this forum who care about you. When you post things try & have your concern in the title: like “I’m worried and need support.” I hope I haven’t rambled on too much. My name is Katie & I live in the U.S.

[tessa46]

Hi Claire

I am so sorry to hear of your diagnosis and I appreciate how difficult that must be at your age. I agree with others advice that it is key to find yourself a haematologist who specialises in MPNs, particularly because there is likely to be more appropriate medication for someone who wants to have a family. I have found it helps to be ‘on your own case’ and find out what is the best treatment for your individual circumstances. I hope this is helpful but please feel free to ignore if not! I wish you good health in the future.

[christiev]

Hello Claire

My son, aged 21, also has Primary Myelofibrosis and is CALR positive - JAK2 negative (my understanding is that PMF is the same as ideopathic MF). He has an excellent MPN specialist here in the UK, who is very reassuring. His bloods are regularly monitored and his general health checked at each visit. He is doing really well and is living an active, full and healthy life. It is a huge shock at first but it has now become a condition he easily lives with. He has also been advised that when the time comes for him to have a BMT this will effect his fertility - but nowadays, issues with fertility are so much more easily and commonly overcome than they were in even the recent past with many women storing eggs for future use so please don't panic too much about that. Keep active, drink plenty of water and eat well - and keep positive!

Really, the best advice is to find a specialist in this field to help you navigate through it all and refer you to other specialists for advice (for example in fertility). Huge advances in medication (as well as BMTs) are happening month by month and I have very confidence that the future is bright - particularly with youth on your side.

Take care of yourself.

[CommonDaisy]

Hello Claire,

Welcome to the forum, I’m sure you’ll find some comfort in the support and other people’s stories here.

I’m sorry to hear of the situation you’re in.

I was first diagnosed with ET when I was 13 (I’m now 28).

I understand how difficult it is being diagnosed so young with this condition and I thought I had also been robbed of the chance to be a mother.

But my husband and I are now planning to start a family soon so I have recently been changed from hydroxy to interferon treatment.

Could interferon be an option for you?

If you ever want to talk please feel free to message me 😊

Take care xx

[CommonDaisy in reply to CommonDaisy]

Also, as others have suggested, I would recommend seeing a haemotologist who specialises in MPNs 😊

[babbittybumble]

Hello Claire Our son was diagnosed with PMF ( Idiopathic MF ) 11 years last March when he was 37 He is very fit and well, works full time and enjoys his lifestyle in Melbourne. The one thing he has is a wonderful MPN consultant who happens to be head of the Bone Marrow Transplant team in Melbourne .Having a doctor that will listen and talk to you and fully understand what he is talking about is essensial,When you read stories here like Simons the progress being made is wonderful Take care BYe GIll

[Janeydot]

Hey Claire sorry to hear of your diagnosis it can be very shocking can’t it. I’m 26 and was diagnosed with PV a few weeks ago. I scared myself like no end for the first week and spent hours researching but now it’s sunk in and I’m feeling much more optimistic and grounded! I don’t know all the details of MF or how it differs from PV but if you want to chat about anything / complain about how we have these crazy conditions so young I am here x

[Betsywest]

Hi Claire, I’m so sorry you have had to join our club but you have found on this forum a super support network that really will give you so much invaluable positivity, support & advice through your journey. It is still early days for you since diagnosis so do allow yourself the time to come to terms with what you have been told. As you learn more I hope you will begin to realise that advances in treatment for MF are always progressing & improving over time & the future is most definitely bright for MPNs. Sending you much love & hugs & make sure you use us if you need any question answered or have any worries you want to share xx

[MFBMT2011]

Thought I posted this yesterday (from Hungary at the end of our trip around the Baltics) but in following through other answers I can’t see it.

‘Welcome Claire, sorry you have to be here but it is a good place to be to get help. While I agree with much of what the previous replies say I would add some words of caution to the Myelofibrosis improvements comments as we are all different and the condition develops differently in each of us. I know this from the various mf buddies I have had over the past few years. Simon has done well with 20+ years, while I was told SCT (Stem Cell Transplant) within 2-3 years, although actually went immediately down that path. Myelofibrosis can meander or move quite quickly despite the drugs.

I am not trying to scare you it is just that the progress is so variable. You are doing the right thing in gathering information so that you are in a position to discuss your options with your doctors.

I had my transplant 7.5 years ago at age 57 in London in the UK.

Happy to provide you with more information on the SCT side if you would like, including stories and an excellent video from an American specialist.

One important piece of information you can provide is where you come from as the health systems in different countries and indeed within them can have different approaches.

Good luck with your research. Happy to help if I can. ‘

Chris (non Jedi version)

[Mazcd Partner MPNVoice]

Hi Claire, welcome to our forum, I do hope that the replies you have had above are helping. I would advise you to read as much as you can on our website mpnvoice.org.uk and also look at some of the videos we have on there. If you would like any information about having a buddy please email me at [e-mail]. Kind regards, Maz

[Leighcox85]

Hi hunni Iam so sorry to hear you have this I was diagnosed at 24 so i can understand what your going through I have had this condition for 10 years of you ever want to talk I would be happy to beat of luck hun xx