CSN Login
Members Online: 14

myelofibrosis

jack kane
Posts: 1
Joined: Mar 2010

I am a physician. Consequently, the literature on the subject of myeloproliferative diseases is known to me and understood. Unfortunately, in the prime of my medical practice, I was afflicted with both ulcerative colitis and a myeloproliferative disorder. Originally, because of an annual physical and a CBC which showed an elevated platelet count, I was diagnosed as essential thrombocytosis, which is a rather benign disorder when compared to its fellow proliferative marrow disorders. I took baby aspirin and Agrylin for about 6 months, but suffered from palpitations and an arrythmia, as a side effect to the drug. I then switched to Hydrea, which drove down the platelet count. About a year or so into the disease, my spleen began to enlarge, and this was the point at which the disease morphed into the more lethal myelofibrosis. I was fortunate enough to find an opening in a drug investigation, which was an FDA approved study of a JAK 2 inhibitor. While not curative, it seems to have improved my quality of life, although trying to stay active with a hemoglobin of 10.0 is very difficult. Thus, I sleep a lot, which has played havoc with my body muscle mass. I have lost 25 pounds as a result of the marrow disease and the colitis, and generally don't feel very well. Unfortunately one of the side effects of a JAK 2 inhibitor, at least the one I am taking, is a depressed platelet and red cell count. So, treatment is sort of a tradeoff - you are damned if you do and damned if you don't. The bone pain or periostitis is fairly well controlled with Aleve, one table taken about ever third day. I find that if I use it when the bone pain begins, rather than waiting until it is more severe, is best. Myelofibrosis is a wasting and debilitating disease, and that is about all one can say about it. Thank you for listening.

softballmom17
Posts: 2
Joined: Jun 2010

Your condition sounds like it is still progressing slow. That is great.
My boy friend was diagnosed with Myelofibrosis in March. He is 60 years old and told to wait and see. Two weeks ago he developed a kidney infection. On Friday he started bleeding in his gums and his palettes were 4,500. How can this disease progress so quickly?

mollieblue
Posts: 2
Joined: Jun 2010

softballmom17, hope your boy friend has improved. How is he doing and how is he dealing with this mentally? Are his friends and family giving him a lot of support?

mollieblue
Posts: 2
Joined: Jun 2010

jack, thankyou for your explanation of the disease which was very direct and complete. How old were you when diagnosed with MF and how old are you now. I am 61 and was diagnosed with MF one month ago. First I was diagnosed with ET (Essential Thromcitosis), but after a bone marrow biopsy, they determined I have Myelofibrosis. I can appreciate your comments about being tired, because I suffer with that issue as well. I don't really know what stage of the disease I am at. My Hepa doc and my Hema doc think I have had this blood disease for about 8 years. When my spleen became so large that I could not tolerate it any longer, I had a splenectomy. It took three different hospital visits for the docs to identify the ET after doing a JAK 2 test which came back positive. It is such a struggle for me to accept that I do not have the energy I was used to, and I keep thinking that I am just lazy or ....old. But I know it is not the age, as I have several friends who still run marathons and they are older than me. Can anyone help me cope with this feeling of loss and just "not knowing". Any suggestions of a type of support group I might find locally? Thank you.

Lindylulu
Posts: 1
Joined: Jun 2010

Thank you Jack. I was just diagnosed with myelofibrosis this last month. I am going to the Mayo Clinic in Minn. for a second opinion. I am curious about the drug investigation you are participating in regarding the JAK2 inhibitor. What is the name of the drug? I see such mixed reports about how people are doing with the myelofibrosis. Some seem to do well for a longtime, I guess it just matters where one is in the progression of the disease.

I don't have symptoms yet other than my spleen was enlarged and had a blood clot in it. That happened about a month ago, since then I have been o.k. and only taking asprin until I get to the Mayo and see what they have to say.

I am so sorry you have had such a difficult time, I wish you the best and hope things turn around for you.
To everyone on this website please keep communicating, it helps to know others are out there. It is such a rare disorder, and fairly new as far as research it is difficult to get much information on it. Best wishes to everyone..

Dilliam
Posts: 2
Joined: Jul 2010

Jack, I have just been diagnosed with myelofibrosis, after having Paroxysmal Nocturnal Hemoglobinuria (PNH) for at least 5 years, and most likely since around 1995. The PNH came with no symptoms, except a mild anemia. This latest (and frightening) threat has come this year but could have been creeping in last year when I had bad Atrial Fibrilation which ended up with an ablation operation which wasn't totally successful and required a blood transfusion. Still, all in all, I have had PNH 15 years or so, with no real symptoms.

I am 72 years old and have had a good, almost perfect lifestyle for at least 25 years; vegetarian with almost no meat sometimes for years and I have walked at lest 6 Kms a day and 50 Kms the whole day up and down hills on the weekend. I have done all-body exercises daily for that time. I retired from the University in 2005 and probably my only stress is arguing with my wife.

My spleen has been enormous for some time and I didn't even notice it until about 5 years ago when my hematologist felt it, made bone marrow biopsies and (after years) confirmed that I had PNH. Now, this last month, my spleen rules my life; it causes my belly to be hard and bulge and doesn't like it if I stand or have any vertical position for long. The pain is niggling and doesn't go away easily. The doctors all say I must have my spleen removed, and I agree. The surgeon is contacted and the operation should occur in a few weeks.

The questions I have are many. Is the spleen the good guy or the bad guy? Is there a way of shrinking it or somehow living with it? Indeed, the last few days either I have got used to it of the symptoms are reduced since I can eat something and have less coughing and breathing problems. It feels like a strap across my chest and mostly down my left side. The CT scan shows it as the largest organ in my body cavity, masybe twice the size of my liver.

I guess myelofibrosis is a cancer. Is it invasive and can it affect other organs; the liver and other lymph nodes? Is it confined to the bone marrow?

It would be great to have a conversation about this--I feel pretty isolated. I don't know what to expect. Surely this 'affliction' has been around since there have been people, perhaps with different names or whatever.

GolferNan
Posts: 12
Joined: Aug 2010

Hi Dilliam,
You are not alone...I am 65 yrs. old and was diagnosed with MF in October, 2005. My main symptoms are an enlarged spleen, low red blood cell count and bone pain. My disease has progressed in the fact that my marrow has begun to scar. This leads to bone pain and it also reduces the ability for the marrow to produce other blood cells. As you know there is not a cure except with a bone marrow transplant (of which I am too old). I am currently on a chemo drug called Hydroxyurea. Not sure if it will work for me. Have only been on it for about 8 days. Go in next week to see if it has affected my other counts. It has a lot of adverse side effect. The doctor hopes it will reduce the size of my spleen and reduce my bone marrow production which should help with the bone pain, but could also reduce the ability of the marrow to produce the other blood cells.....

This disease affects everyone differently so it is hard to find someone with exactly the same symptoms.. I have read that radiation can help to reduce the size of the spleen. That would be something to discuss with your doctor. There are some other comments on the "Bone Cancer" message boards you may want to check out. Good luck to you and keep posting your progress....everyone here on these message boards seem to be very nice, caring people. I am a "newbie" to this site....

God Bless!
Nan

SonnieYablonski69
Posts: 5
Joined: Dec 2010

Hi Golfer Nan
How are you doing? Hope your doing better- Looks like you where on chemo. Im new to this website/board.
My name is Sondra and Im an RN. Not currently working (have 3 little ones to take care of) but trying to help make my step dad feel better by finding a support group or any info on this.
My step dad was just diagnosed with this horrible rare disease. He had been sick for about a year and it took this long to finally get a name for what he has. = The only symptom he has is tired. He has had chronic anemia for some time now. In the past month or 2 he only had 1-2 blood transfusions. He is now living in Arizona and is seeing Dr. Mesa, a specialist who is doing research on this disease. He may be going on a study, if he qualifies for it.

If you could give me some info or support groups that would be great.

God Bless you and be strong.

SonnieYablonski69
Posts: 5
Joined: Dec 2010

Hi Jack
So sorry that you have this horrible disease. As a physician, Do you know why some that have this disease are different ages? I thought, it was mainly about 60yrs old that is when you would develop this?
Do you know anything or about any studies out there? I heard about Dr. Mesa, in Arizona who is a specialist or research doctor. My step dad has MF and just got dx with this wasting and debilitating disease ( I agree with your words stated in your board)
I am an RN not working now (home with 3 kids) but wanting to find support groups or any information for my step dad. He is in the Denial, Anger, Depression state now. I feel really bad for anyone with this disease. I know there is no cure for this and all I can say is be hopeful that someday there will be some type of rx that will stop this from scarring the bone marrow. There is hope. Lets pray.
Thanks for listening.
God Bless and be strong.

julieruse
Posts: 3
Joined: Jan 2011

My husband turned 50 in August when he last gave blood (and his blood count must have been normal then) but has just been told he has high white blood cell count and high platelets and his spleen is enlarged (he went to the dr's because of the spleen aching - but didn't know what it was). We only found out two days ago and are in a state of shock at the moment. He doesn't feel bad or tired like some of you poor other people feel and he hasn't really read up about how serious this all is because I don't think he can face admitting he has tjis and dealing with telling family and friends.
I HAVE to know what to expect, because I want to help him as best I can, does anyone think this is a fast progression as his spleen is already enlarged? Has anyone considered Gerson Therapy - I am going to try him on this as soon as I can because he doesn't have his BM tests until 2 weeks and then we have another 3 week wait.

Is this an illness that takes the same time in everyone, does is depend on age etc and what does it mean if he has the JAK cell??? Is this good or bad?

I have looked a lot at causes and it seems Benzene is a likely cause for him (he is a builder and painter), I know this dopesn't help HIM but I don't undrstand why such a strong powerful man who eats really healthily, never had vaccinations, hasn't been ill snce he had malaria at 18, would suddenly get this.

Because he is so worried about upsetting his family he wants to keep this all quiet, I am finding that part hard because I need help with understanding all this new medical jargon and I'm too stressed out to take it in. Can anyone please wite to me in layman terms what is happening and is likely to happen - also he has 2 fit sisters and 3 children, 19,18 and 7, can they be possible BM donors?

Sorry to all of you out there having to deal with this horribly sad illness and if we have any significant changes with Gerson Therapy I will endeavor to let ypu all know.

I look forward to talking to someone please.
J x

Norseman
Posts: 1
Joined: Jan 2011

I am in the same position as you are - my husband was diagnosed in Nov. and up until Oct. he was like a bull and within 5 wks he was so weak he barely could get out of bed. He was exhausted so I took him to the ER and within 1 hr he was getting 3 pts of blood and admitted to the hospital. Six days later and lots of x-rays, MRI's and bone marrow biopsy we were told he has myelofibrosis. Never ever heard of it before that day. Have tried to find info - not much out there. Also don't want to tell anyone because it's to hard to say it and acknowledge he's sick. It's taken it's toll on me as well. It was like hitting a brick wall and now we're just peeling ourselves off of it. I too am looking for some support and if I find it I will share. This is my first time on this site and I'm not sure how it works so bare with me. Take care and God Bless all of us....

ms_survivor
Posts: 6
Joined: Mar 2010

Norseman- see my note to julieruse. Tell your family. You need the support. Get on with your life and take a deep breath. You can live with this. Yes, with limitations, but hey, that's ok. I'm still here. FYI, there is a whole list of things he should not be doing to jeopardize his condition. Let me know if you need the list.

Eleanor Pella
Posts: 1
Joined: Aug 2011

My 82 y/o mother was dx with MF in May 2011. Since then she was getting blood transfusions, platelet transfusion and white blood cell shots about every 3 weeks and then as time progressed it became every week, then every 4 days, then daily. She has now opted to go with hospice care. My question is this: what will happen to her body without the production of or transfusions of red, white or platelet cells? At present her symptoms are: extreme tiredness; lots of napping; her hands have just begun to swell and stiffen up to the point that finger mobility is limited. She is experiencing more joint pain, and for the 1st time yesterday she had chest pain. She was suppose to start on Ex-Jade but now with hospice she will not take that. PLEASE SHARE YOUR EXPERIENCES WITH SYMPTOMS without medical treatments. Her mind is as sharp as ever, she has lost a lot of weight and muscle mass, but we joke that she doesn't look sick. THANKS

ms_survivor
Posts: 6
Joined: Mar 2010

Julieruse- This is not the end of the world. I have this disease and was diagnosed May 2009 when I was 50. I had a bone marrow transplant in September of 2009. Not easy, but worthwhile. There are a lot of limitations, but it could always be worse. There are always things to be grateful for. At least there are some treatments available. A bone marrow transplant can be curative. I will be undergoing my second transplant in March. Second time is the charm. I live with this everyday and am grateful for everyday I have. You need to be too. God doesn't give us anything we can't handle. It's not "why me", but "why not me". Your husband is a lucky man to have a supportive wife by his side.

julieruse
Posts: 3
Joined: Jan 2011

Sorry, Ms_survivor,

I didn't really know how to find this link again and just found it by accident while searching on google. I am pleased that you are so positive about this, funny how things change from 'sheer panick' to a sense of calm and a need for control. My husband has decided to try Gerson Therapy, we are just waiting for his BM biopsy results on Wednesday and then he will make a decision after that as to when he starts. We have removed everything toxic from our house and ceared the cupboards and filled up with organic food and not toxic cleaners/shampoo/toothpaste etc. A specialist seems to think there could be mercury poisining? So we need to shift this before we start otherwise it would come back again. Why do you have to have another bone marrow transplant (if you don't mind me asking?) Did it take you a long time to get over the first one? Good luck in March, will be thinking of you and sending out poitive thoughts. J x

ericavebury
Posts: 1
Joined: Oct 2011

Hello Jack and all you other youngsters. My date of birth was September 29, 1928 and I was diagnosed in June 2011 after platelets were over 1,000 at a routine King's College Hospital haematology appointment, followed by a bone marrow biopsy. Hydroxycarbamide was precribed, in doses that varied slightly according to the platelet readings at blood tests before haematology consultations at intervals varying from four to six weeks.

I note that some people think they are too old for SCT. There doesn't seem to be an upper age limit for this procedure but obviously the prognosis gets worse with increasing age. Every patient is different and if you are less than 75, in good health, can find a match, its worth asking your doctors.

I spent most of this June in hospital, first with pneumonia and then for an investigation of why the body was swelled up with retained fluid. The explamation was renal artery stenosis, requiring double angioplasty and stenting. That had nothing to do with MF.

Over the last 18 years I have had: quadruple bypass i December 1995; a burst colon followig a bicycle asccident on October 7, 2001; further operation to rejoin the loose ends of the colon April 2002; removal of maltoma on the lung 2006 (see https://www.youtube.com/watch?v=4Qwn-ygcYJQ); multiple fracture of left femur 2010;EVAR (replaqcement of aorta by plastic tubing) 2010, and angioplasty of the right leg. American readers may like to note that all this treatment was free on the National Health Service. Further information see ericavebury.blogspot.com.

Apart from increasing fatigue I don't have any symptoms yet from the MF, but atherosclerosis and arthritis have slowed me down and I'm registered disabled. But my wife Lindsay is a tremendous support and I still manage to work. At my 80th birthday party I said I was never going to retire, and I think people who do stop working tend to go dowhill faster as a result

I'm reconciled to dying in about two years' time, by which time I'll be nearly 88, and I don't want to continue living with an ever decreasing quality of life. For those who would like a rough idea of their life expectancy, enter DIPPS+ in Google. More generally, there's a lot of information out there on the web, though mostly in technical language. It pays to know the meaning of commonly used terms like Haematopoiesis, which are defined on Wikipedia.

 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network