I do not have Pre-MF, but my husband was recently diagnosed.
He is only 51.
We had no idea, but he lost a dramatic amount of weight and became quite fatigued. His spleen is at 32cm and causes him a lot of grief. I’m not sure of the grade of BMB, but will definitely ask!
I’m trying to research and understand as much as possible but am having so little luck. Even his Haem had no take home information about it for us, only PMF.
He has been taking aspirin and hydroxyurea daily for the past 3 months. He also has a full blood panel done every 2 weeks and his results don’t seem to be getting better. His platelets are at 69, granulocytes immature at 4.4 and lactate dehydrogenase is 483.
I don’t have a question per se, but just hoping to hear other people’s experiences
Thank you!
Written by
TM76
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Hello. I am sorry to hear about your husband. I don't have PMF but I would recommend he sees a MPN specialist. It sounds like his disease is on the severe side and he needs special care. Why is he still on aspirin when his platelets are on the low side?
Blood clots in MPNs usually come from a high number of platelets or red blood cells. Your husbands platelets are under the normal range so I would ask his doctor about why he is still on the aspirin. Also, your husbands blood numbers seem to indicate myelofibrosis not pre-myelofibrosis. I would ask the doctor about that as well.
Having a true MPN specialist like Prof. Harrison might be something you may wish to consider. Maz (MPN Voice coordinator), might be able to help you and hubby arrange something if you guys are located not too far away from St Thomas & Guys etc?
And... if you are... ? Perhaps others here might be able to recommend another more closely located MPN specialist.
Me, I am in Sydney, so not much help there I am afraid. But please do follow up because hubby's MPN sounds in need of some expert assistance from someone who better understands what MPNs are and how best to treat them etc...
Maz will also provide you w/ some MPN literature and direct you to some Online information too...
You are in the right place to find the assistance you need, and everyone here are warm knowledgeable and most empathetic...
Hi, I’ve read all your posts and answers. I do hope someone in Canada can help you. Not long ago someone posted a list of MPN specialists in the world. Failing that expensive as it will be, there is the mayo clinic in America.
Hello TM. I was diagnosed with PMF aged 58 in 2010 in the UK. I chose to go the Stem Cell Transplant (SCT aka Bone Marrow Transplant) route as it is the only known potential cure. Needless to say I am still here and okay. I had some minor symptoms like shortness of breath when exercising and nose bleeds but don't recall anyone telling me the measurements of my spleen, although I know it was four fingers below my rib cage.
SCT is a tough and risky process that is not suitable for everyone as not all are fit enough, might have other conditions or can't find a match, but it is worth investigating as an option. I should also say that not all survive the process with the figure that a lot of us go in with is 60% success, 20% relapse and 20% mortality. However, there are lots of us survivors around the world. I did not match my siblings so got a stem cell match from a Matched Unrelated Donor (MUD) found on one of the world wide stem cell databases; my donor, Sarah Gardner looks after me well!
There are various drugs available to help with symptoms and they work well with some as I am sure people here will share, but again they don't work on everyone so its a case of finding the right one. However, they manage symptoms and are not a cure.
As we all know MF can move very slowly or quite quickly so it is useful to study the options so that you have some background and can discuss them with the medical experts.
I am happy to answer questions, provide information from a patients perspective and help anyone who might be considering the SCT option. I had no-one to talk to going in to mine, but took inspiration reading a newspaper article about one of your countrymen, Gord Kaster, who had an experimental SCT nearly 20 years before I had mine, in 1993.
Good luck with your investigations.
Chris (the non-Jedi version with the Princess Leia stem cells). The other SCT Chris, aka Jedireject, will no doubt chip in.
Seems like from reading your post your husband is experiencing all the same symptoms I have.
At first my doctors diagnosed me with JAK2 and wanted me to start Hydrea, I told my doctors I was going for a second opinion. My current doctor had me do a bone marrow biopsy and confirmed I have MF and put me on Jakafi, I am currently getting a transfusion once a week.
Have your husband ask his doctors for a bone marrow biopsy and see the results, hopefully he is negative for MF.
Unfortunately the fact that his platelet count is only 69,000 is a sign that it really isn't pre-myelofibrosis. That's a sign of outright myelofibrosis in itself. When platelets get to the 30,000 range that is when you can experience spontaneous bleeding. That is why I questioned the aspirin.
As someone who has been dealing with a MPN for 16 years I highly recommend getting a copy of his blood and biopsy results for your own records.
Well I was diagnosed around age 27 and I have a very mild form of disease...I guess I'm unlucky but lucky at the same time.
Yes, the fact that he is anemic confirms even more that it is not pre-myelofibrosis in my mind. I have done many many years of research and I hate to say it but I think finding a new doctor is something you really should do. Hopefully a MPN specialist. I get the feeling you aren't getting all the information you should be getting. I also feel that there are better medications out there for the symptoms your husband is experiencing. Usually MF patients won't see such a drop in their platelets until the disease is fairly advanced. You may be able to get good control of his disease under the right doctor's care.
I will put it this way...1 in 8 women get breast cancer. So if you see an oncologist for breast cancer they will have a lot of experience with that disease. But only 2 people in 100,000 get myelofibrosis...so his hematologist may have never seen a case of myelofibrosis in his life before. That is where the MPN specialist comes in. Especially in your husbands case. If your husband had a minor case of ET like me then seeing a regular hematologist is fine. But your husband has a an advanced form of a MPN that deserves special care from a doctor who is knowledgeable with his particular disease. I hope I make sense. ❤
Some good points and advice there. One question, have you always been diagnosed with Myelofibrosis or did you start with ET and then develop Myelofibrosis more recently?
Hello. I still only have ET. I haven't progressed to MF. I have the laziest form of ET ever. My numbers are the same as 16 years ago. I have researched my butt off about MF though so I will know the signs if I start to progress.
I wanted to thank you for the support and advice. We had our appointment today.
1st - his haematologist is also an MPN specialist. She works at 2 clinics and at the cancer agency, she is 1 of 4 specialists there. 2nd - he is not anemic!
3rd - his current medication isn’t working. Not to say that it is making him worse, but he is getting worse. So the Dr is going to put in an appeal for a different pill that has a higher success rate.
She said he is still Grade 1, and gave us things we can look out for, in case this worsens or starts to mutate
Thank you for all of your advice. I walked in armed with many questions that I feel more confident walking out.
Your situation is very similar to mine. MF is known to strike people generally at a higher age but my husband is also in his 50. As it hopefully a slow moving disease age is on your side. Jakafi is suppose to be the best medication to reduce the spleen and regain weight. It is a very expensive drug and you are lucky to live in Canada where you most likely will have access to it. My husband is starting of on Hydroxa for now. He also has a very large spleen but no other symptoms at the time. They did some more genetic tests which can help to asses the risk of Progression to a more serious form if Leukemia. You do need to see a specialist. Don’t go on google it just will freak you out. We are on a journey with many twist and turns to come but it is a journey.
Definitely go see a MPN Specialist. Here is a list that includes some I believe are near you. mpnforum.com/list-hem./ .
It is a truism that assertive patients receive higher quality care. Passive patients do not. It sounds like your husband needs highly specialized care and you may have to push to receive the quality of care he needs and deserves.
Hi. First, welcome to our group. I’m so sorry to hear about your husband’s health. The most important thing to do right away is to get him in to see a doctor who specializes in MPNS. I can’t stress enough how important & necessary this is especially when you’re having the problems your husband is experiencing. There are drugs which have successfully reduced spleen size & treated many of the symptoms of patients with Primary MF. If there isn't a specialist where you live, your husband could meet with one and start on the correct treatment regimene & then the specialist could coordinate his care with a local hematologist or oncologist. That’s what I do. I meet with my specialist a few times a year & my local doctor sends him my lab results the other times. If I have problems I contact my specialist. I can’t tell you how many of us have benefitted greatly from having a knowledgable doctor oversee our care. In the meantime, please know you can post on here any questions you have or ask for moral/emotional support, etc. Also, when you say his platelets are 69 I wonder if it’s 69,000. Hang in there!! Katie
So, I am post-et MF. I was diagnosed with ET Jak 2 12 years ago at age 52, and MF last year when I switched hematologists to an MPN specialist. I was very anemic with extreme fatigue for about a year before that. A new drug was approved last August here in the states by the FDA, called Fedratinib. She put me on that new drug in October, as well as EPO injections every week if my hemaglobin went below 10.2. I also take hydrea and baby aspirin. By January, I was able to stop taking the injections and my last visit two weeks ago my hemoglobin was 11.9. I’m doing much better overall. So, there is hope for your husband. You just have to find the right doctor for him. Good luck with everything.
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