Myelofibrosis

I do not know anything about the condition you asked about. However, I do have a question. Why don't they remove her spleen? Would that make her more comfortable?
I am sorry that you have to go through this. I will keep you in my prayers.

Hi,

i'm really sorry to hear about what your sister is going through and the same for her loved ones. It is very trying emotionally for the care takers and so heart breaking knowing how helpless we are for our loved ones.

My 37 year old girlfriend went through excessive thirst last november for about 2 weeks. We all thought it was diabetes but turns out, she was diagnosed with aml late january 2004. My poor baby lingered in the hospital for 4 long months and finally died late may.

I remain very angry, depressed and devastated that this came out of no where and took her. I go to the cemetery every sat and sun as it makes me feel "closer" to her but it is terrible losing someone so special. I will possibly join a support group next month as the individual counseling once a week is not enough.

We weren't together that long but I got so emotionally involved when she got ill. I was at the hospital 5-6 days a week along with her parents so it has greatly affected me and the aftermath of it all has been very difficult.

I don't know much about myelofibrosis but my gf had acute myeloid leukemia so the myelo part sounds like it's the same type of cancer. It's really one of the worst cancers because you cannot have an operation or cut out that part. Once it gets into the blood, good luck!

Please feel free to write me as I have a lot to say along these lines. I wish your sister good luck and good health. You must stay strong, be there for her as much as you can and try to get your mind off the illness, even for just a few moments a day. Easier said than done, I know.

Hi there, i was just reading your post, i am so sorry to hear about your gf. I am in hospital right now with my dad, he is very ill and through my own research i believe it is either AML or myelofibrosis. I was wondering if you could relay to me your gf symptoms towards the end. I just wanted to see if they are similar to my dads.
Thanks for your time, and again, my deepest condolences

To those that suggest they remove her sister's spleen, they do not do this because she will die much sooner. Although we think the spleen is a useless instrument; in cases like myelofibrosis, it is what keeps the patient alive. This is also why it becomes enlarged. Your spleen has taken over where your bone marrow has failed. It is producing red/white blood cells that ward off infection and sustain life. The spleen is in overdrive mode; therefore becomes horribly enlarged. My mother's spleen has given her the look of a woman in a term pregnancy. She can only wear maternity clothing; despite the fact that she is 100 pounds.

My husband was diagnosed with myelofibrosis in march of this year. I'm tiring to locate someone who has it or a care giver who might be able to help.

I want to know how big can a spleen get and at what rate does is grow. My husband's is now football size and grew from hand size to football size in two months. It that fast? It seems like it is to me?

I am updating, since I heard from renia. My very ill mother had her 20 pound spleen removed in june. The surgeon who performed the surgery told my mother that "if" it could be removed he could do it. Her platelet level at the time was 30. After one week in icu and an additional week in an oncology ward, they did another blood test. Her platelet level went from 30 to 65,000. You are reading this correct. She was on the brink of death and removing her spleen raised her count that much. Since that time she has maintained her platelet count from 50,000 to 70,000. My mother weighed 120 pounds going into surgery, so they removed 20% of her body weight by taking out the spleen. Hence, why it was so dangerous. If anyone would like the surgeons information, I will gladly foward. He is one of the top surgeons in the world. We nearly sat by to watch her days finish. I'm so thankful we tried. Her quality of life has improved one hundred fold.

A 20 pounds spleen!! How long did it take to get that big? I thought football size was big. So was it the size of a ????? It had to be causing your mother a lot of pain! It makes me want to cry!

I don't understand, the rise in platelet, it is my understanding that the spleen and liver take over because the bone marrow is scared and isn't producing enough blood. So... You see where my confusion lies. It great for you mother and her loved ones to have her better!

How do the doctors explain this to you? Is this something that happens right after the spleen is remove and they fades? Or is it going to remain at a good level? And yes, I would like the doctor's info...

I'm looking at ucla and a blood center in washington for our second opinion and/or case review. I just want to find a doctor who has the most experience with myelofibrosis.

I have been told by my doctors a spleen can get so large its sitting' on your knee's.

Rena I would look into a bone marrow transplant for your sister. I met a lady at Anderson that had just had one 2 mts ago..and she was doing well at the time. She was on transfusions ever other day ...one day platletes and the other red blood cells....till her bone marrow transplant

Also check into trail studies hon...their making great progress in research right now...i'm on one...and my levels all tho not as low as her's...are going back up...please don't wait to long....I met others at anderson that were transfusion dependent and are in trial studies and no longer having those transfusions....

My father was diagnosed with Myelofibrosis. His blood platelets count went down from 120K to 60K in 2 months. He has been treated by many doctors, many different medications, opinions...etc. He is 65 years old, so marrow transplant is out of question.

Is there a well known doctor/center who treats Myelofibrosis? Regardless of location, I want to fly him any where in the world to have a decent treatment. I am so desperate to help him.

Any body can help?

I have post-polycythemia myelofibrosis. I am 48 years old, female, and generally rather hyper! This condition has leveled me, though, to say the least, and I''m crying over your stories.

I am extremely fortunate to be participating in a Phase 3 JAK2 Inhibitor clinical trial being conducted at Stanford University Research Center. This "wonder drug," which is shrinking my spleen, returning my energy, and presumably extending my life expectancy, is also under clinical trial at centers across the country. Get your loved ones into a trial like this one! My guess is that the drug will soon be FDA-approved and while it is not a cure for the disease, moves in the direction of one.

Mayo Clinic Rochester Minnesota. Dr. Ayalew Tefferi is considered the worlds leading expert in myelofibrosis. Reuban Mesa also at Mayo (in Arizona, I believe). Dr. Silver in New York City (I believe) is also highly experienced in myelofibrosis.

My husband (51 yrs old) has myelofibrosis (dx June 06). Been a rough few yrs. Lots and lots of clinical trials/research currently being done, thanks largely to a genetic mutation (JaK2) discovered just 5 yrs ago (caused an explosion of research).

Very good reasons to be optimistic.

Mayo Clinic Rochester Minnesota. Dr. Ayalew Tefferi is considered the worlds leading expert in myelofibrosis. Reuban Mesa also at Mayo (in Arizona, I believe). Dr. Silver in New York City (I believe) is also highly experienced in myelofibrosis.

My husband (51 yrs old) has myelofibrosis (dx June 06). Been a rough few yrs. Lots and lots of clinical trials/research currently being done, thanks largely to a genetic mutation (JaK2) discovered just 5 yrs ago (caused an explosion of research).

Very good reasons to be optimistic.

I was diagnosed with idiopathic myelod fibrosis on the 23rd of Dec 2009. According to my oncologist this was a fatal, non curable, non treatable leukemia and due to my condition, he gave me a very short time to live. I have been symptomatic for 10 years and put down the tiredness and lethargy to my massive workload and long hours worked. After taking 5 ml per day of sodium selenite and 40 grams per day of ascorbic acid, my oncologist couldn’t (wouldn’t) believe I turned it around in 5 weeks. After insisting I must have had blood transfusions (He was on holidays during this period) to get the positive result – haemoglobin and platelets back to normal, energy levels high, no weight loss, pain, etc., etc. My white blood cell count was still up, but not noticeably, but he took me off the death list. He was quite blase` when I told him what I took to get the great result, but suggested I move on to Ascorbic Acid IV injections after I mentioned I was heading in this direction. I am back at work and life is looking good. Google Sodium Selenite or Elaine Hollingsworth and follow the links. In case there are any dream takers who want to knock my results or even the FDA, I have got copies of all my tests and I took not once ounce of treatment from the oncologist (no chemo). My oncologist said no cure, quick death. My self treatment including sodium selenite and ascorbic acid worked or was it good luck or divine intevention. I will go with the sodium selenite and ascorbic acid. The luck was all mine.” I can be contacted via the contact form on my website ecobites dot com (Richard D.) if anyone wants to discuss. I am also pleased to see that some are discussing natural alternatives on this forum because conventional medicine has no cure for this insidious disease. There is also a Class Action run by a US law firm for myelofibrosis sufferers exposed to Benzene. By the way, I am 61 years of age. Eat organic. Keep fit. Don't drink or smoke. I was exposed to benzene in a printing business I owned for ten years. There is no incidence of leukemia or similar in my family ever. My relatives tend to drop dead from very old age - late 90's to over 100. I don't plan to buck the trend. THERE IS HOPE!
Addition to the above - I note that Chickpeas said that the Mayo Clinic is a leader in the field of Myelofibrosis. If there isn't a cure, then the Mayo Clinic aren't leaders. Something to consider when discussing this point - The Mayo Clinic in America is the US's largest cancer clinic and is based in all major US cities. It is a huge money making machine. The Mayo Clinic is not about curing, it is about making money. Over the years, they have tried to discredit vitamin C as a cancer cure for obvious reasons and they got caught out in the 80's for misleading information and inaccurate testing to discredit the work done by Linus Pauling who won the Nobel Price for his Vitamin C discoveries. Linus Pauling died at 94 years after a lifetime of good health. The managing director of the Mayo Clinics who tried to discredit Pauling died at 67. Yep, you guessed it, from cancer...Ironic isn't it that they couldn't cure their Managing Director.

To Dalt.
I was diagnosed with MF in December of 2011. Your post is very impressive. The question I have - where can I buy 40 gram vitamin C. Is it self-made Liposomal? How many times per day? Any additional information will be greatly appreciated.

My last post was nearly six months now. I can report that I have no symptoms of Myelofibrosis and my general health is excellent. Yesterday I played a 45 minute game of football (parents against their children). The game was extremely fast and I finished well and scored two goals. I maintain a daily regime of 30 grams of vitamin c per day, 3-4 ml of Selenium and 4 grams of pharmaceutical grade bi carb. I recommend it to all Myelofibrosis sufferers.

I posted a while back how I turned around my myelofibrosis within a very short period using vitamin c and selenium and I have been asymptomatic for approx 1.5
years.

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 in the hope of making a lot of money. 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. Don't be surprised that the oncologists will Pooh Pooh the research as there is no money in vitamin c injections, but there is in administering chemo drugs and bone marrow
transplants -

"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

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

Hello,

I am wondering why both selenium and vitamin C are taken together? Do you need to take them both or can you just take vitamin C?

Re: Vitamin C and Selenium

I have experimented with many combinations to treat my MF. From personal experience and research, selenium increases the red blood cell count and normalizes the platelets. Vitamin C seems effective in warding of disease including cold and flu plus destroying blast cells. Selenium is effective as well as destroying blast cells. It is approximately 19 months since I was given an all clear with my MF and during this period, I have not caught one cold or the flu, although my now seven year old brings it all home from school and passing it on to my wife, but I seem bullet proof. Power to Vitamin C.

Is this real? My friend has had ET which turned into MF just a couple of months ago. His platelet count is down to around 17 (thousand) and requires platelet as well as blood transfusions regularly. Can you email me what/how you've been treating yourself please?

sincerely,
Glori

Hi Dalt, very interestead in your views. My mum has been diagnosed with MF and is struggling. Can I contact you offline?

Can u pls provide update about CBC? Vit C has been helping? How is CBC now? thanks so much.