Thanks for the info and questions above, I hope people respond. I too am newly diagnosed and have a JAK2 factor. here is a video from a doctor at the Mayo Clinic who specializes in this. It puts things in plain language and addresses JAK2 inhibitors and what they do. http://www.youtube.com/watch?v=DxKPasVMN1o

You might want to visit this page http://mpdfoundation.org/clinical_trials_recruiting.asp
to find some current info on clinical trials. I hope you attract some people on this site who have participated, and can give you (us) more info.
Also this one is a little scary but informative. my feeling is we can beat the facts! http://www.wellsphere.com/general-medicine-article/experimental-drug-shows-promise-for-bone-marrow-disorder/1230428
Good luck, and I wish the best for you.

Ruxolitinib Shows Statistically Significant Positive Outcomes in Myelofibrosis

Posted by Peter Hofland, PhD on June 10, 2011 at 2:00pmView Peter Hofland, PhD's blog
The largest clinical program to date in patients with a potentially life-threatening blood cancer known as myelofibrosis (MF) has shown that a new therapeutic candidate, ruxolitinib (INCB-018424, Incyte Corp /Novartis AG), provided clinical benefits to patients compared to placebo and best available therapy.

Ruxolitinib was initially developed to target the constitutive activation of the JAK-STAT pathway in patients with myeloproliferative neoplasms (MPNs), previously referred to as myeloproliferative disorders (MPDs)which also include essential thrombocythemia and polycythemia vera. However, ongoing research showed meaningful reductions in spleen size and relief of debilitating symptoms have been noted in patients in patients with myelofibrosis (MF) in both primary and post-essential thrombocythemia (PET-MF)/ and post-polycythemia vera (PPV-PV).

A life threatening blood cancer
Myelofibrosis (MF), the most serious of the myeloproliferative neoplasms (MPNs), is a potentially life threatening blood cancer, characterized by bone marrow fibrosis ("scar tissue") and splenomegaly (huge spleen), as well as anemia and/or thrombocytopenia, and constitutional symptoms such as pruritus, fatigue, night sweats, fever, weight loss and bone pain.

Median survival in MF is less than 6 years but can be as little as 27 months in high-risk patients. There are currently no FDA-approved medicines for the disease.

Trial results
Results of the trial were presented by Srdan Verstovsek,MD, PhD, Associate Professor, Department of Leukemia, Division of Cancer Medicine, The University of Texas MD Anderson Cancer Center, at the 16th Congress of EHA from the COMFORT-I study, one of two pivotal studies demonstrating statistical significance in achieving primary and secondary efficacy endpoints, including reduction of spleen size and improvement in multiple symptoms. The second Phase III study, COMFORT-II, is also being presented at EHA. COMFORT-I was conducted in the U.S., Canada and Australia; COMFORT-II in the EU.

Commenting on the trial results, Verstovsek said: “The ruxolitinib clinical data establish a benchmark for a new therapeutic approach to decrease splenomegaly, itself associated with significant morbidity, and to improve the symptoms that have such a profound impact on the quality of life for patients with myelofibrosis. These benefits are clinically meaningful and directly relate to the significant improvements we saw in the global health status of patients receiving ruxolitinib.”

COMFORT Study
“The lack of response in the placebo group in COMFORT-I and in the best available therapy arm of COMFORT-II highlights the need for new therapeutic options to reduce spleen size and decrease symptoms, such as fatigue and weight loss, in patients with MF,” Verstovsek added.

Well tolerated treatment
In addition to the efficacy findings, ruxolitinib was shown to be well-tolerated, with approximately three-quarters of patients still on active therapy following completion of the clinical program. The most common adverse events seen were anemia and thrombocytopenia (low platelet counts), both of which were manageable.

Other study programs
Ruxolitinib also is being evaluated in a global Phase III study (RESPONSE) in patients with another MPN, advanced polycythemia vera, who are resistant to or intolerant of the cytostatic agent hydroxyurea. The invesyigational agent is also being evaluated in various other hematologic malignancies.

For more information:
- Passamonti F, Maffioli M, Caramazza D,Cazzola M. yeloproliferative neoplasms: From JAK2 mutations discovery to JAK2 inhibitor therapies. Oncotarget. 2011 Jun 5. [Epub ahead of print][Full Article]
- Naqvi K, Verstovsek S, Kantarjian H, Ravandi F. A potential role of ruxolitinib in leukemia. Expert Opin Investig Drugs. 2011 Jun 3. [Epub ahead of print]
- Mesa RA, Kantarjian H, Tefferi A, Dueck A, Levy R,et al. Evaluating the serial use of the myelofibrosis symptom assessment form for measuring symptomatic improvement: Performance in 87 myelofibrosis patients on a JAK1 and JAK2 inhibitor (INCB018424) clinical trial. Cancer. 2011 Apr 8. doi: 10.1002/cncr.26129. [Epub ahead of print]
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Tags: INCB-018424, Incyte, JAK-STAT, MF, MPN, PV, Ruxolitinib, cancer, myeloproliferative,

These sent to me by a friend. Her suggestions. Try to get into a phase three trial, and if possible one that is not a double blind (does not use a placebo). These are usually dosing trials.

http://www.mayoclinic.org/myelofibrosis/clinicaltrials.html

http://www.cancer.gov/cancertopics/pdq/treatment/myeloproliferative/HealthProfessional/page4#Section_TrialSearch_9_sid_4

Heat Therapy
Heat therapy as an alternative practice is different from hyperthermia, which is being tested in conventional clinical trials for treatment of cancer. Both types of heat therapy are discussed here.
Other common name(s): hyperthermia, heat treatment, thermotherapy, thermal therapy

Scientific/medical name(s): none

Description
Heat therapy involves exposing part or all of the body to high temperatures. In cancer treatment, it is used mainly usually to enhance other forms of therapy, such as radiation and chemotherapy. Heat may be applied to affected parts of the body along with other treatments to help relieve certain kinds of pain or infections. Heat therapy may also involve injecting substances to cause a fever, such as DNP (chemical name 2-4-dinitrophenol) (see our document, Coley Toxins).

Overview
Local and regional heat therapy is being studied as a possible part of standard treatment for some cancers. Clinical trials are studying its use alone and along with radiation therapy and chemotherapy. More research is still needed to determine the full benefits of heat therapy in cancer treatment.

Heat can be used in different forms to help relieve joint or muscle pain due to arthritis, injury, or inflammation. It is also used as part of treatment for certain kinds of infections that are close to the body's surface, such as skin infections, generally along with antibiotics.

The use of heat therapy for cancer treatment that is not based on results of controlled clinical trials or is not investigational (currently being tested in carefully designed clinical trials) is generally considered an alternative treatment.

There are some serious complications linked to so-called whole-body heat therapy. The injection of unproven substances such as DNP to cause "intracellular hyperthermia" (see below) and fever has caused deaths. Available scientific evidence has not supported claims that this is a useful treatment for cancer.

How is it promoted for use?
Proponents of the alternative use of heat therapy claim that it reduces or even eliminates the need for conventional treatment. They say it decreases the number of invading organisms so the immune system can handle them, acting much like a fever helping the body fight off disease.

There is also an unproven treatment called intracellular hyperthermia, which is based on the theory that injection of DNP into the body heats cells from the inside out. Available scientific evidence does not support these claims. The injected substance is known to be dangerous and has caused deaths.

Certain types of heat therapy are being tested in conventional cancer treatment and may be promoted for helping chemo or radiation to work better.

What does it involve?
External heating in complementary or alternative therapy may involve hot water, warming blankets, warm compresses or hot pads, hot wax, heated chambers, or other methods to heat all or part of the body. This may be done along with other types of alternative or complementary treatment.

Internal heating using intracellular hyperthermia is an alternative therapy that involves injecting DNP into the body to produce fever. It may be used along with other types of treatment in nontraditional treatment settings.

Three major types of heat therapy are being investigated by cancer researchers in mainstream medicine: local, regional, and whole-body. In standard medical care, there is some evidence that local and regional heat therapy may help slow or stop cancer growth.

Local heat therapy involves applying fairly high heat to a very small area, such as a tumor. The area may be heated from the outside using high-frequency waves, or from the inside using sterile probes (thin, heated wires or implanted microwave antennae) or radiofrequency electrodes. The temperature of the tumor is high enough to quickly kill its cells. Another form of local heat therapy involves raising the temperature of an affected area just a few degrees to improve blood flow so that chemo or radiation work better.
In regional heat therapy, an organ or limb is heated. One method, called perfusion, involves removing the patient's blood, heating it, and then pumping it into a region to heat that part of the body from the inside.
Whole-body heat therapy is being studied for treating metastatic cancer (cancer that has spread). It involves the use of warm blankets, warm water, inductive coils (like those used in electric blankets), or thermal chambers (much like large incubators).
Heat is sometimes applied to the outside of the body to help relieve stiffness and pain from arthritis or other muscle and joint problems. This may involve warm compresses, warm baths, melted wax, or other techniques. Heat is sometimes used with conventional therapy to help treat certain skin infections or inflammation. Warm soaks, warm compresses, and other means may be used to heat the affected area. Some of these methods are used in treatment centers, while others can be used at home.

What is the history behind it?
The first documented use of heat treatment dates back to 400 BC with Hippocrates. In 500 BC, the Greek physician Parmenides believed that if he could create fever, he could cure all illness. In India, heat was used to treat breast cancer more than a thousand years before that.

More recent scientific interest in heat therapy began in 1866, when M. Busch, a German physician, described a patient with a neck sarcoma which disappeared after a prolonged high fever. Similar reports were made by others 20 years later. In 1893, William Coley gave patients toxins extracted from Streptococcus pyogenes and Serratia marcescens bacteria to cause fever. In 1898, the Swedish gynecologist F. Westermark published a study in which he described using a coil containing hot water as a source of local heat to treat 7 women with cancer of the cervix. The treatment was painful, but one cancer reportedly disappeared and others seemed to improve. Reports followed of tumors responding to both localized and whole-body heat therapy treatments. But the scientific evidence was weak and interest soon faded.

In the 1960s, a series of biochemical studies involving the effects of high temperature on normal and malignant cells were conducted using rodent cells. Based on their observations, researchers concluded that cancer cells were more sensitive to heat than normal cells. However, studies have since shown that there is little or no difference between cancer cells and normal cells in terms of their response to heat alone.

What is the evidence?
In a technique called radiofrequency ablation, very high temperatures can be used to kill cancer cells directly, but the heat is carefully controlled and precisely targeted to reduce damage to normal tissues nearby. Radiofrequency ablation uses much higher temperatures than hyperthermia or heat treatment, and uses electrodes to heat and destroy the cancer.

The temperatures normally used for hyperthermia (up to 113º F) are usually not hot enough to kill cancer cells outright unless used along with radiation therapy or chemotherapy. Many laboratory and clinical studies have shown that heat therapy can help radiation therapy in local and regional tumor control. It can also make some types of chemotherapy work better in certain cancer cases. Whole-body heat therapy is currently being studied as a method to treat illnesses that are spread throughout the body.

More research is underway on different types of chemotherapy that can be used along with local and regional heat therapy as well as whole body heat therapy. While hyperthermia is a promising way to improve cancer treatment, it is largely an experimental technique at this time and is not commonly used. Clinical trials of hyperthermia are now being done to try to find the best way to use this technique. Current studies are looking at its usefulness in treating many types of cancer (see our document, Hyperthermia).

Local heat is also applied to certain areas of the body in conventional medicine. It has been shown in clinical studies to help relieve symptoms such as arthritis pain for a short time. Its use with other medical conditions, such as small skin infections, may help speed healing.

Available evidence for DNP and other alternative substances that are injected to induce fever do not support claims that it can treat cancer or other illness. There is, however, evidence that some of these treatments have caused harm or death.

Are there any possible problems or complications?
Heat therapy can cause or worsen internal bleeding. The high death rate and labor-intensive methods associated with whole-body heat therapy have also caused concerns. Heat therapy as part of cancer treatment should only be given under careful supervision by expert doctors. Most normal tissues are not harmed during conventional medical hyperthermia if the temperature stays below 111 to 113° F. However, the heat can be uneven, and some areas of the body can be exposed to greater heat, resulting in burns, blisters, or pain.

Heat should be used with caution in people who have anemia, heart disease, diabetes, seizure disorders, or tuberculosis, as well as women who are pregnant, and people who are sensitive to the effects of heat.

Hot compresses or soaks used to help treat skin infections can spread germs to others if the container or compress is not thoroughly cleaned after use. Talk with your doctor about how to best protect others if heat is recommended for an infection.

"Intracellular hyperthermia" using DNP has caused a number of deaths. DNP has long been banned by the FDA because of this.

Relying on this type of treatment alone and avoiding or delaying conventional medical care for cancer, may have serious health consequences.

For more information
More information from your American Cancer Society

The following information on complementary and alternative therapies may also be helpful to you. These materials may be found on our Web site www.cancer.org) or ordered from our toll-free number (1-800-227-2345).

Thank you for the Heat treatment for Cancer Information. It is interesting. Here is another article regarding this from the American Scientist Magazine. I just discussed this today with a good friend who is going to try it.

http://www.americanscientist.org/issues/feature/healing-heat