Cancer Survivors Network

I am a 36 yr old just told yesterday about the diagnosis. I had gone for routine physical when my doctor found high platelet counts.I subsequently had Bone marrow biopsy which confirmed Primary Idiopathic myelofibrosis. I am at a loss- My hemato-oncologist had no answers for me. I am still completely asymptomatic.I am unsure about my options and survival.The uncertanity is killing me, Did your fiance start of as completely asymptomatic?.Where would you be getting the transfusion done? How are you all coping?. I have a 7 yr old. I hope I live long to see him grow.

faithhusain

Hi i am 35 I was diagnosed last year! I found out after having my third child! She was born with a heart defect! She ended up having a heart transplant and spent ten months in the hospital. Anyway she is home now and i really need to focus in to see what i can do about this disease. I have a large spleen now my blood count has been up and down but has not gotten to the point of needing a transfusion. I am wondering how are you doing since you were diagnosed?

Hi! I was diagnosed with Myelofibrosis in 2000. I wasn't able to get a bone marrow transplant because I wasn't able to find any matches. I have a very rare antigen. I had platelets over a million. The doctor said I had Essential Thrombocythemia (ET). I then had a bone marrow biopsy and he said I had myelofibrosis. The doctor put me on Hydrea. I am currently on Anagrlide (Agrylin). I have been having problems keeping my platelets down. I am currently taking 6 pills of Agrylin a day. Each pill is 0.5 mg. My white and red are fine now, usually at the top level. I will be 41 this year. I guess everyone is different. This is the first time I have been on any support site. I would be happy to talk to anyone with this disease. Thanks!

Hello,

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Take care and be well,

Dana
CSN Dana

I too was diagosed with Mylefibrosis in 2000 and have enjoyed 4 years of "stable" blood counts until early this fall when the counts seemed to take a nosedive. Up to now we have been in "watch and wait" mode. I will be having another bone marrow biopsy in Dec and we will see where we go from there. Yes, it seems that everyone has a slightly different pattern. I am 61 and worked full time (State Employee) for three years after diagnosis. I am VERY happy to be retired for a year now.

Hi!! My husband was diagnosed with Myelofibrosis 2 yrs. ago. He is 48 yrs. old. How are you doing? Any improvement? Do you have any symptoms? I know that you are looking for someone to talk with that has this disease but I would love to talk with someone that just knows what I am talking about. Thanks!!! :>)

Cajungirl: How is your husband? I love to talk to you if you can read this email.
My e mail address: suesue555@hotmail.com
Take care!
sue

HOW IS YOUR HUSBAND DOING? I ALSO HAVE MYELOFIBROSIS AND I AM 56. IT IS SCARY. MY COUNT WAS DOWN THIS WEEK TO 8.7. MY DR IS VERY CONCERNED AS SHE SAID IF IT GOES BELOW 8, I NEED TO EITHER TAKE PILLS, WHICH IS THE FIRST OPTION TO TRY TO BUILD UP RED COUNT OR IT IT DOESN'T WORK, THEN TRANSFUSIONS. SHE WANTS MY BROTHERS CHECKED FOR POSSIBLE BONE MARROW DONERS. DID YOU HUSBAND GO TO A SPECIALISTS, LIKE SLOAN OR CORNELL? I WENT TO SLOAN IN NY FOR A 2ND OPINION AND RESULTS WERE THE SAME AS MY DR IN NJ. I FELL HEALTHY OTHERWISE EXCEPT FOR BEING TIRED LATELY. IT JUST SEEMS LIKE SOMETHING THAT IS UNREALISTIC AT THIS POINT.

Hello,
My name is Sue and I have been diagosed with Myelosfibrosis since August 2008. I also can not find any matches for bone marrow transplant. I have also have high blood platelets over 1.2 million. I have been takinng the same medicine as you for 18 years. The doctor had infromed me that by the age of 65 years of age all my bone marrow with deterioted. I also tranformed from ET to Myelosfibrosis I am currently 59 years now. For 2 months I have been taking Canadian and chinese herbs for 2 months. In the middle of January I will know if the herbs have been helping. Feel free to contact me at suesue555@hotmail.com I am looking forward from hearing from you.

Hello Sue
I have been diagnosed with Mylefibrosis since June 2009, I am 61 years old, so bone marrow transplant is out of the question.
I am taking thalidomide, prednisone and an injection of Aranesp every three week and my hemoglobin, platelets are under control at this point.
Please let me know about the chinese herbs.
Hope you are doing better.

I hope you have had contact with others with myelofibrosis since your posting on 11-27-2004! I was diagnosed August 2000 and have enjoyed "stable" blood counts until this fall. I'm scheduled for another bone marrow biopsy in December and we will see where we go from here.

There is a lot of information available about median longevity from diagnosis - but if it is published it is probably out of date. What you can expect depends on what symptoms you have now. The norm is for fluctuating blood counts with a generally downward trend. I was 57 when I was diagnosed August 2001 and have enjoyed 4 years of "stable" counts - HGB around 11 or 11.5 - until this fall. Sept was 9.9 and Nov was 9.2. I'm going back for another bone marrow biopsy and CT scan on Dec 15th. Did you have a bone marrow biopsy and Ct Scan? When will you see your hematologist/oncologist again? As for what to do: learn all you can about myelofibrosis; find a support group (I attend a general cancer group as well as a Leukemia, Lymphoma group); and plan some fun happenings. When I was diagnosed we updated our wills, drew up legal and medical power of attorney and updated our living wills. We are prepared for anything - but will never be ready. And we are now planning the vacation of my dreams for next summer.

MeSizelove/any one

I hope you still can read this message, I need to know any one have Myelofibrosis
over five years to talk to me. Is there any hope ?

Hi, i was just diagnosed 2 days ago. I am 32 years old. very scared. i have 3 children. Did anyone respond to you about having myelofibrosis for over 5 years. In every thing i read that's what i see but it seems like very few people live longer i guess it depends on the person. How are you doing now?

Hi, Just wanted to give you hope, I was diagnosed in 1999 at the age of 45. Was told that I only survive 5 years, I am still here & just started to see changes in my blood work. I have a large spleen & the white count is in the 50,000 but other then that, I work & do everything that my body lets me do. If I never gone to the doctor 10 years ago. I would not think there is anything wrong with me... My red & platelet count is normal. Hope this gives you "faith"..

Thank you, this makes me feel a lot better. I'm just praying it goes as well for me. Are you taking any medication? I am not right now but my platelet is high and hemoglobin 10, other than that i feel fine. Please keep in touch let me know how you are doing. Again, Thank you for responding.

Hi Stavan,
I am sorry for your recent diagnosis, I am sure it was frightening for you to find out you have this disease. I remember when my sister was diagnosed over 16 yrs ago, yep, 16 years. I thought she would be gone within 5 yrs. She has been stable for this whole time, worked fulltime and has felt pretty normal. NOTHING has stopped her from doing things that she enjoys. She is occassionally tired but she paces herself.
She doesn't like to talk about her disease so I can't get much information out of her. She is stubborn that way.
Have faith, keep in touch with others, get information, get to know your body and your limits. Be aware of your labwork, keep records, ask questions, plan ahead, get family to get tested to see if they are a match in case you need a bone marrow transplant. My family got tested, I am unfortunately a match but my older sister is IN CASE my younger sister needs one. NOT YET though, she is stable for now. So hang in there Stavan, there are thousands of people with this who live a long productive life. Enjoy life,Good luck to you, Beth

Thanks its always comforting to hear some good news. How old is your sister? My doctor said it just depends so i'm going to try and stay positive and trust God to do the rest.

HI Stavan, my sister is 52yrs. old. One other thing I forgot to tell you was, please share this with family and friends. You absolutely need the emotional support through this ordeal. It is not easy going through this by yourself. Have someone go with you to the Dr. and for bone marrow biopsies. It's always so helpful to have a special family or friend there with you. Not only will they be a support for you but they can be an extra set of ears for information the Dr. is giving you., there is a lot of new confusing information to absorb. You don't have to be alone with this. Beth

This comment has been removed by the Moderator

Still Here and Stavan:
If you go to the Discussion Boards, Long term effective, Myelofibrosis
there are few people post their comment and new medicine.........
I am so glad Still here is still here, that is what I like to know too,
My chinese herbal medicine cancer specialist has been given me chinese medicine
that will help my spleen keeps normal, so far, I have not have found any doctor treated
Myeloffibrosis yet, my blood specialist is only given me the same medicine for
my high blood planate, which I have been taking for last 19 years.............
Regards
suesue

This comment has been removed by the Moderator

This comment has been removed by the Moderator

Hi Sue Sue,
I am glad you are doing so well. What is the name of the medicine that you have been on for 19yrs? and what is the name of the chinese herb? Does it shrink the spleen? Have you had side effects with the meds?
Thank you for sharing your story, it really helps others so much, Continued good health, Beth

I posted a while back how I turned around my myelofibrosis within a very short period using natural remedies and I have been asymptomatic for approx 1.5 years. I might add that I was so sick in late 2009, my oncologist only gave me a short time to live.

Those MF sufferers will find hope with the following extract that medical research in 2002 (yes, nine years ago) it was discovered that vitamin c will supress the Jak 2 inhibitor gene that is suspected of triggering myelofibrosis.

I might add that major cancer institutes are rushing to find a supressor for the JAK 2 gene. Why, when it is readily available now.

Read the extract and for those who want the full medical article to give to your oncologists, let me know and I will forward this to you - "HEMATOPOIESIS
Vitamin C inhibits granulocyte macrophage–colony-stimulating factor–induced signaling pathways Juan M. Ca´rcamo, Oriana Bo´rquez-Ojeda, and David W. Golde Vitamin C is present in the cytosol as ascorbic acid, functioning primarily as a cofactor for enzymatic reactions and as an antioxidant to scavenge free radicals.

Human granulocyte macrophage–colonystimulating factor (GM-CSF) induces an increase in reactive oxygen species (ROS) and uses ROS for some signaling functions.
We therefore investigated the effect of vitamin C on GM-CSF–mediated responses.
Loading U937 cells with vitamin C decreased intracellular levels of ROS and inhibited the production of ROS induced by GM-CSF. Vitamin C suppressed
GM-CSF–dependent phosphorylation of the signal transducer and activator of transcription 5 (Stat-5) and mitogenactivated protein (MAP) kinase (Erk1 and Erk2) in a dose-dependent manner as was phosphorylation of MAP kinase induced by both interleukin 3 (IL-3) and GM-CSF in HL-60 cells. In 293T cells transfected with alpha and beta GM-CSF receptor subunits (
GMR and GMR), GM-CSF–induced phosphorylation of GMR and Jak-2 activation was suppressed by vitamin C loading. GM-CSF–mediated transcriptional activation of a luciferase reporter
construct containing STAT-binding sites was also inhibited by vitamin C.
These results substantiate the importance of ROS in GM-CSF signaling and indicate a role for vitamin C in downmodulating GM-CSF signaling responses. Our findings point to vitamin C as a regulator of cytokine redox-signal transduction in host defense cells and a possible role in controlling inflammatory responses.

(Blood. 2002;99:3205-3212)
© 2002 by The American Society of Hematology

It has also been reported that medical research has found that 'Emodin' an active component of traditional chinese/japanese medicine - from the root and rhizome of Rheum Palmatum (chinese rhubarb) will supress the JAK 2 inhibitor gene. Note: The common Rhubarb found in the western world is an entirely different plant.

For the full medical paper in pdf form, I can be contacted via richard@ecobites.com - Reference Dalt/JAK 2 inhibitor gene.

Hi, it's a relief to have just found this site. So much seems to be happening at once. My husband was diagnosed with MF in 2004, no symptoms, JAK neg, just enlarged spleen and liver. Everything was relatively fine, but we were upset that there was no help until symptoms start to show.

That's where we are now.

Past few months, his blood tests are showing declining hemoglobin, and also what they call, cell blasts, which are currently at 3, last month they were 2. We were told when it hits at 30%, it will become something much more serious, leukemia.

Also told that transplant is very dangerous, just as last ditch efforts, and there's no match for him within the family.

Our specialist in Rochester, New York wants us to go to Mayo Clinic where there are clinical trials going on, the earliest appointment was for September 27th, so off we go.

They refused to answer any questions however over the phone (or email), just show up, where the specialist will speak to us for one hour, and then decide what to do.

Minnesota is far from us, especially when the seasons change and snows come, so it's plane only.

Anyway, we're scared. He's very tired, and has many naps during the day, however, he's still working around the house, a huge deal. Planting, gardening, mowing, taking great care of the house and also, me.

Does anyone have any advice or experiences with the Mayo Clinic, and with this stage of MF? Anything you have to say would be helpful, and you know I mean anything!

We just don't want this to continue to decline, especially with those blast cells, that's the scary part.

Oh yes, forget to mention, he's lost and still losing weight, although he eats every 2 hours, and eats a lot. He started at 256, now down to 193. He's started to feel a little bony, although his tummy is large because of the spleen size (double what it should be).

Ph yes, forgot to mention, my husband is 69 yrs.

Please help with any advice, experiences you may have. Thanks so much.

Hi Annie,
I was wondering if you found any help for your husband at mayo. My father was diagnosed with MF about 2 years ago. He is 77 and has been going downhill fast in the last 6 months. His red and white blood counts are low as well as his platelets. His is now getting a blood and platelet transfusion every week. He has lost a lot of weight and is getting really bonney.
I am looking for a miracle. Any info would be greatly appreciated.
Thank you
Janice

I am so sorry it took me so long to get back to you. I live in Georgia. I have an appointment next week at the Mayo Clnic. How did everything go with your new doctor? Ill let you know how my appointment go next week. Ive been trying to keep my mind busy. I know how it is not to have anyone to talk to. My husband wants me not to worry. The world can be coming from under his feet nothing moves him but i am the opposite. Where do you live? I

Hi
I just joined today. I started with essential thrombocythemia (too many platelets), diagnosed in 2005. Treated with Anagrelide until March '08, but was losing confidence in my doctor. Switched to an oncologist/hematologist at NYU. He seems very good. He did a BM biopsy, and confirmed myelofibrosis. I am 55, and have been told that a bone marrow transplant is not feasible--25%chance of survival.

We weaned me off of Anagrelide, and began treatment with interferon alpha injections. Very rough start, but after 8 months it is getting more tolerable. Lots of side effects, if anyone is interested or is also treating with interferon, I would like to share info.

best to all

Dear lahicks:

You may have already found the information you requested. But just in case, perhaps this website might be helpful:

http://www.mayoclinic.com/health/myelofibrosis/DS00886

My mother had myelofibrosis and MDS at the same time, she was 64 and had a de novo form of MF and MDS...meaning, a secondary type of Myleofibrosis/MDS since they were caused by Chemotherapy and Radiation, a rare side effect if you will. This meant that she wouldn't get the same or lasting benefits from treatments or transfusions,plus her age and of course there was the fact that she had two types of Myelodysplastic disorders. So I wanted to make sure I was clear about the range of extreme difficulty in treating her before I said anything else.

She eventually had to find a second oncologist that had experience with Myelofibrosis and when she did that, he helped her qualify for a stem cell transplant- even at her age and with the other factors that seemed to be stacked against her. Her brother was a match to be a donor and I think that is why she was approved. Of course this was considered to be a clinical trial, as all stem cell transplants may still be...but I just wanted to let those who are diagnosed a little later in life know that a transplant isn't always entirely out of the question because of age. If you do not have a Specialist that can help you do that, then it never hurts to get a second opinion. Especially if you have a sibling...and even better: a sibling donor that is the opposite sex from the patient.

This condition can be described as a series of ups and downs. Time can go by with no incident and sometimes there can be sudden changes. There is no rhyme or reason to progression, it's difficult to "stage" and I have seen first hand at how frustrating this is, when my mom wanted more than "watch and wait".

I hope I am not out of line for posting this, since I don't have a total success story to share,but this rare diagnosis made an impact on my family and I hope for the best, for anyone experiencing this. I was a care giver for a long time and I never found another family caregiver for this particular illness on a message board, so thats another reason why I wanted to come back to this site. Also, everyone was wrong about estimating a window of "time" for her and "medium ranges" on the web were not even close. Probably out of date and based on a time when the only treatment options were transfusions.

Hi lahicks,
Sorry to hear of your recent dx of MF. I am 65 and was diagnosed with MF in Oct. 2005. Most of the research I have done gives a prognosis of 5-15 years survival rate with a median range of 5 years. I have seen a lot of survivors (on message boards and support sites) living beyond this range so there is always hope that you will be one of the lucky ones. I am into my 5th year and have just recently begun to develop symptoms. I've had an enlarged spleen for a couple of years with no issues, but now it has begun to hurt so don't know if it is bigger or not. I have begun to have a lot of bone pain mostly in my legs, knees and hip/pelvic area. This is due to the scaring of my bone marrow which is an end result of the disease. I've been on pain meds but now need more. My hematologist has started me on Hydroxeurea to see if that will ease the pain and reduce my spleen size. The only blood counts that were always off in me (other than hgb-Anemia) is my RBC. It is low. There is a lot of information about the disease on the internet. You should do some research and maybe you will find a few answers there. It is a rare disease and affects everyone differently, so it is unpredictable. Not much in the way of treatment either. You are young so a bone marrow transplant may be your best bet. That is the only thing that will cure it. Hope you can find a match, maybe someone in your family. Be sure to ask your doctor if that would be an option for you. I am too old and it is too risky for me to consider a transplant. I am here if you want to ask me any other questions. I've been looking for someone else with this disease....we all need support and understanding. Let me know if I can help in any way. Good luck and may God bless you with peace and strength to get you through this valley. I will keep you and your family in my prayers.

My 50 year-old husband was diagnosed this week with myelofibrosis. He feels great and if he hadn't had a routine blood test he wouldn't know he was sick. I found a number of the testimonies here of people that have lived for years with myelofibrosis in a stable holding pattern very encouraging. Are any of you doing anything special beyond tracking with blood tests to keep the disease at bay and from progressing?
Looking forward to hearing your comments.

Hi Spalazini, I am 33 in a couple weeks and my doctors believe I have MF. I was diagnosed 6 years ago with Polycythemia vera and have been told I have been an interesting case. My platelets at one point were up and over 3000 for example. My platelets have dropped to 300 which yes is normal, but not for someone with PV, my spleen and liver are enlarged so he is saying that I have probably progressed to MF, which we knew was a possibility, I just didnt think this soon. I had a CT scan done to check all kinds of thins including my bones. I was told that I have spots on my bones... no idea what that means, but its scaring the crap out of me. I was hoping I could get more information that what I am finding online... I understand its scarring of the bones, and I understand why. I just would like to know what to expect.... can anyone help?

Oh my goodness, I am scared to death. I was diagnosed with idiopathic myelofibrosis at age 18. I am currently 25. My platelet count was one million, and I was infused with iron which dropped it down to 600-700 thousand. I've had that steady number for about four years. Now my count is 145 thousand, down from 200 something thousand last month. I'm scared to death as this looks like scared to death as this looks like progression. Most doctors can't believe that I even have this horrible disease because of my age. They all say I'm the youngest they've ever seen with MF. I have an enlarged spleen and anemia. My red and white count is low but normal for MF an my lmy liver is normal. If anyone knows anything bout this condition to better assist, please email me, charnised@yahoo.com. I have a five year old, seven-month old, and I am five months pregnant with my third. I need to be here for my children's lives

SarahMel: The best place to find out what to expect is to talk with your own physician. If he/she is not that knowledgeable in PV and MF then seek out someone who is. You can find them where they are doing much of the research (Mayo - AZ, FL and Minn., Fred Hutchinson, Columbia Presbyterian in NYC, Dana Farber in Boston and others.) Everyone presents with a different set of symptoms, what you experience may be different than some others. There are much we share in common but I found hearing all the possibilities was too overwhelming. I had PV for about 34 years before I was diagnosed with MF. Some with MF progress very slowly and are stable for years. I progressed very rapidly and underwent a stem cell transplant just about one year ago. It all is very scary, don't give up on hope. There are many brilliant minds working on treatments and cures. Good Luck, gather knowledge and be active in your treatment plan.

Hi my mom had myelofibrosis she just pased on the 10th. but she did a test study in orlando which is very successful. which i hope that it can help alot of people. do you know if it runs in the family? all i have read it has not said that it does but a brother and sister were in the test study

Hello ya'll,

I'm killing a little time at work and ran across this site.

I'm 53 and I was diagnosed last September (2010) after a routine physical showed elevated platets. I also have type 4 hyperlipodemia (triglycerides) so I get blood work routinely. For the first time in about 10 years my triglycerides were normal..but my platelets were 504 and climbing, and I a little blood in my stool. Talk about a mixed result. :(

After going to a hematologist, having a bone marrow test, and visiting the Mayo, I had confirmation of MF. I am very fortunate that I've never had symptoms and I've already had a remission with my plates initially climbing to 579 and steadily dropping to 378. My RBC & WBC are normal too. I am blessed in this regard and feel the anxiety that many of you have.

I plan to visit this site often, and will respond to emails. I know that I won't necessarily be healthy from MF forever...likely not to be truthful. Until then I want to be here for those who are suffering and anxious...and to see what is in store for me.

God Bless all of you
Chauncey

PS Interesting side note: While researching MF I found out it's more "prevelant" in those of Jewish descent. This led to to research my family tree...found out I'm genetically of Jewish descent through the maternal side. Weird huh?

Hi, it's a relief to have just found this site. So much seems to be happening at once. I would have loved to write to everyone here, so please feel free to answer from everyone and anyone.

My husband was diagnosed with MF in 2004, no symptoms, JAK neg, just enlarged spleen and liver. Everything was relatively fine, but we were upset that there was no help until symptoms start to show.

That's where we are now.

Past few months, his blood tests are showing declining hemoglobin, and also what they call, cell blasts, which are currently at 3, last month they were 2. We were told when it hits at 30%, it will become something much more serious, leukemia.

Also told that transplant is very dangerous, just as last ditch efforts, and there's no match for him within the family.

Our specialist in Rochester, New York wants us to go to Mayo Clinic where there are clinical trials going on, the earliest appointment was for September 27th, so off we go.

They refused to answer any questions however over the phone (or email), just show up, where the specialist will speak to us for one hour, and then decide what to do.

Minnesota is far from us, especially when the seasons change and snows come, so it's plane only.

Anyway, we're scared. He's very tired, and has many naps during the day, however, he's still working around the house, a huge deal. Planting, gardening, mowing, taking great care of the house and also, me.

Does anyone have any advice or experiences with the Mayo Clinic, and with this stage of MF? Anything you have to say would be helpful, and you know I mean anything!

We just don't want this to continue to decline, especially with those blast cells, that's the scary part.

Oh yes, forget to mention, he's lost and still losing weight, although he eats every 2 hours, and eats a lot. He started at 256, now down to 193. He's started to feel a little bony, although his tummy is large because of the spleen size (double what it should be).

Please help with any advice, experiences you may have. Thanks so much.