Myelofibrosis

SarahMel said:

MF
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?

MF
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.

faithhusain said:

Myelofibrosis-2010- April 29
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

Myleofibrosis
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?

bethevans said:

for Sue sue: name of medicine?
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

Herbs and vitamin c found to supress JAK 2 inhibitor gene
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.

DuckerHunter said:

Just found this site
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?

Mayo Clinic help
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.

Annie R. said:

Mayo Clinic and Blast Cells
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.

Mayo clinic and MF
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

Dalt said:

Herbs and vitamin c found to supress JAK 2 inhibitor gene
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.

Herbs and Vitamin C Therapy
Hi Dalt, I have recently been diagnosed with primary myelofibrotosis in Jan/2012 after a routine physical. Referred to hemotologist/oncologist at our Cancer Clinic. I have more "nuisance syptoms"(itching after shower, RBC Low normal, WBC normal, slight weight loss,fatigue for approx 4-5 wks(due to low iron), slight increase in spleen size)I feel great last 3 mo (high enery, weight gain back to normal, increased appetite. At this point my H/O wants to monitor progress with monthly blood work.
He mentioned that I can probably qualify for a JAK2 inhibitor clinical trial that is under way in Canada but since I have few really serious symptoms I have to make a decision.
I am very interested in your post about vitamin C and Emodin as it is the ONELY ref I have found on the internet re the effects on PMF.
Are you still on the regime? still "holding PMF at bay"? I will email you for the full medical paper.
Thanks

supermans pal said:

interferon alpha treatment
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

hi
Hi Supermans i m taking Interfaron 2 alpha 3 miu from this month. Can you please tell how effective are these. will they help in reduction of spleen size and in MF ? How much side effects they have ?

Thnx..

teach45 said:

Herbs and Vitamin C Therapy
Hi Dalt, I have recently been diagnosed with primary myelofibrotosis in Jan/2012 after a routine physical. Referred to hemotologist/oncologist at our Cancer Clinic. I have more "nuisance syptoms"(itching after shower, RBC Low normal, WBC normal, slight weight loss,fatigue for approx 4-5 wks(due to low iron), slight increase in spleen size)I feel great last 3 mo (high enery, weight gain back to normal, increased appetite. At this point my H/O wants to monitor progress with monthly blood work.
He mentioned that I can probably qualify for a JAK2 inhibitor clinical trial that is under way in Canada but since I have few really serious symptoms I have to make a decision.
I am very interested in your post about vitamin C and Emodin as it is the ONELY ref I have found on the internet re the effects on PMF.
Are you still on the regime? still "holding PMF at bay"? I will email you for the full medical paper.
Thanks

My story is somewhat the
My story is somewhat the same as the above story except I have been on Jakafi tablets for about six months. I was diagnosed with MF in april of 2012.
Symptoms was reduced Hemo, kidney disease, gout, enlarged Spleen,increased Platelets, weight gain and skin irritation. The Spleen has reduced slightly after six months of Jakafi. At the time of initiating the Jakafi, I was told that my Hemo might further lower, which it has. I am now taking blood transfusions about every 40 days and on one occasion I spent some time in the hospital as my Hemo dropped unexpectedly to 7.0 I am scheduled to come off of Jakafi in two weeks as there is no positive results other than spleen reduction.
I am interested in all the information about vitamin C therepy I have been reading about.
I would like to hear from those that are using Vit C. I am 75 yrs old and need all the information I can gather.
Thanks

myelofibrosis

Hi, I am a 48 year old male diagnosed with myelofibrosis April 2012. All of my blood counts are so low that I was receiving a transfusion of at least two units every other week. Now it is every week. I need a bone marrow transplant, but my insurance won't cover it. Would like to find others with similar low blood, to compare numbers and see how you cope? Hope to hear soon.  This is my first attempt anywhere to contact others.       Ed.

Shery said:

My fiance was diagnose with Myelofribrosis in 1995. He is currently blood monitoring. (platelet are plentiful! Hemoglobin is falling...currently 93) He will have a BMT (brother is the donor, most thankful for the match) when the Dr. decides it is time. His spleen is still intact and they will take it out in prep for BMT or before if it gets bigger. So far, his counts seem to be falling at a steady pace, but we pray every day for advancement in BMT's. They say the minute his hgb hits 80 (I question that, apparently if you require tranfusions, it weakens the immune system) he will be set up for the transplant. Brad is 48 in a few weeks. He works (an electrician so long days) and only seems to be mildly tired. As he puts it, "I only take one stair at a time instead of 2". Brad doesn't much like to discuss his MF, however if you have any questions that I can help you with, or even as outside support, I would be happy to.
Shery

hi

my husband is also suffering from myelofibrosis n daignosed in nov 2012 n he is 37 yr old n i m getting tense day by day ............i really dnt knw that what happened with us to next morning? mean i really dnt understand that either it ll be manageble or not? plz tell me he has slightly hepatospleenomegaly which is not to be seen in general check ups.........just only found in ultrasound and his hemoglobin level is too low now dr prescibed him eprex injection which is not so working in second month ..........tell me about initial situation which happened with u ppl plz let me inform i wanna guide from u......  

thnx