Tuesday, October 13, 2015

Sivana-ET "I am a fighter and don’t give up easily"

Silvana ET

I am Silvana, and I live in Rotterdam, The Netherlands. I'm 52 years old and was diagnosed with E.T December 19th, 2011, about 3 weeks after I had a bone marrow biopsy. I have 2 children, a daughter and son. My other experience with a chronic condition was with asthma, which I was diagnosed with 1993/1994.

In 2003 I was hospitalized at the ICU for 3 weeks with Acute respiratory distress syndrome (ARDS) which included 2 weeks in a drug injured coma. After this I asked my complete medical file where I read that my doctors thought at that time i had MDS. However, I didn't receive my diagnosis of ET until 2011. That’s why I believe I have been living with this long before I was diagnosed. 
In december 2013 I was also diagnosed with papillairy thyroid cancer, stage 3. I had 2 surgery's to remove the whole thyroid and I had also twice the highest dose radio active iodine treatment. In May I heard the good news that I am thyroid cancer free! My next check up is November. About 2 months ago I had a minor stroke which caused my doctors to modify my regimen from aspirin to clopidogrel. In the past 6 weeks I have also been on Hydrea.

I am a fighter and don’t give up easily! On November 13th I am going to London ((UK) to attend the ‘Living with MPN’ day!

It’s been a long time since being on a plan, and I am excited and a bit insecure to go all alone. I look forward to meeting others out there with MPN. I am also going for the 4th year in a row to the Dutch MPN day which is October 31st!

Tuesday, October 6, 2015

How to Help a Sick Friend

How to Be There for a Sick Friend

A guide for being there when it matters most

What can I do to help?" is probably the most common thing we say to a friend who is ill or in need. But despite our best intentions, this may not be the best way to lend a helping hand. When a person is diagnosed with an MPN blood cancer, patients often feel too overwhelmed or too proud to know how to respond. Now, here's some ways for you to support a sick friend.

1. Don't ask, just do. Offer something specific (big or small) that you can do to help out and suggest a time when you can follow through, such as "How about I come over on Friday at six and make you dinner?" This may help ease any embarrassment or guilt your friend may feel about asking for help.

2. Be honest. It can be difficult to find the right words—or any words at all—when a friend is in crisis. Sometimes, simply saying "I don't know what to say" is the best way to start a conversation.

3. Add a personal touch. While an iTunes gift card or a good book is a great gift, personalized presents can be the most meaningful. A baked batch of favorite cookies could be a great comfort. For someone living abroad, make me a short video to tell them that you are thinking of them. You can send dozens of hand-folded origami cranes for good luck.

4. Listen. When news of a cancer diagnosis spreads, patients can be inundated by opinions, advice, and information on everything from nutrition to spiritual outlook. Help out a friend by being a sounding board rather than an information dispenser.

Wednesday, September 23, 2015

CTI Biopharma to submit New Drug Aplication for Pacritinib

CTI Biopharma to submit NDA for Pacritinib

September 23, 2015
CTI BioPharma Corp. today announced their plan to submit a new drug application (NDA) to the U.S. Food and Drug Administration (FDA) for Pacritinib, an oral kinase inhibitor with specificity for JAK2, FLT3, IRAK1 and CSF1R. They are requesting approval for this drug as a treatment for patients with intermediate and high-risk myelofibrosis with low platelet counts of less than 50,000 per microliter (<50,000/uL).

Submission of an NDA after a single Phase 3 trial under accelerated approval, instead of waiting to complete two Phase 3 trials, could potentially reduce time to market by up to 14 months.

Read the full press release from CTI Biopharma here.

For more information about the FDA Accelerated Approval program click here.

The PERSIST-1 trials, which is a randomized trial of Pacritinib against best available therapy in patients with  myelofibrosis regardless of platelet counts is ongoing. CTI Biopharma is working in partneship with Baxalta on the development of Pacrinitib.
- See more at: http://www.mpnresearchfoundation.org/CTI-Biopharma-to-submit-NDA-for-Pacritinib#sthash.Sx6PDYf6.dpuf

Thursday, September 17, 2015

What's next for MPN Research?

Before there was knowledge of the JAK2 mutation, there was the MPN Research Foundation.


Both the Foundation and MPN patients had the nerve to demand that medical science deal with us now


We were audacious enough to be impatient, to push for better and more treatment options now


On a personal level, being diagnosed with an MPN may have been one of the biggest shocks of your life. Globally, the fight against cancer is one of the most significant challenges in history, and we must not rest until we have the answers we deserve, answers that lurk in our bodies and in as-yet untried interventions.  


Sixty years after the MPNs were first identified we have finally begun to make progress. One approved medication. There are more treatments in clinical trials now than ever before, all representing a promise of new and better options. These are good things, but it is not enough, and it is not time to sit back and wait. 


Now is the time to act. So we are asking you today: what's next? If you could focus MPN research on one problem or area of interest, what would it be? Take a moment to tell us now. We're listening.

Tuesday, September 8, 2015

Our support means you are never alone.

In the fight against MPN Blood Cancer, Research & Support can make all the difference. The MPN Research Foundation is your partner. The innovative research we fund moves science forward. Support from family, friends and us means you are never alone. Together we can make a difference today, while finding better treatments and a cure for tomorrow. Patients and caregivers have options for support, both online and in person.

The MPN Research Foundation will be rolling out a list of activities for MPN patients to participate in during the month of September and will be highlighting some of the important work currently being conducted in research, advocacy and education. These activities have been spearheaded not just by MPN Research Foundation, but by a wider group of organizations working together to help patients.

Blood Cancer Awareness Month Events

Patient Support Groups
September 10, 2015

Contact: Mabel at mabel.d.peters@kp.org 303-764-8523

September 10, 2015-Gilda's Club Chicago.@6-8pm
Contact: Raquel at rnunez@mpnresearchfoundation.org

September 17, 2015
Contact: Jean at 724.831.0368 or Email: mpn.pgh.sup@gmail.com

Los Angeles
September 26th 11am to 3pm.

Contact: Ron Anderson at ron.anderson77@gmail.com

SF Bay Area
October 3rd at 9:30am-4:30pm in San Francisco
Registration required and space is limited.

For patient support group meetings beyond September click here

- See more at: http://www.mpnresearchfoundation.org/MPNBloodCancerAwarenessMonth-5F2013#sthash.MvblxsAY.dpuf

Patient Symposiums

Cancer Support Community

September 1-30 – CSC local sites will be hosting  awareness events: Shining the Light on MPN during the month of September.

Leukemia and Lymphoma Society

Tuesday, September 8, – Blood Cancer Conference in Hershey, Pennsylvania

MPN Advocacy and Education International

September 11-12 - Women and MPN , San Diego, CA

 Patient Power

A Town Meeting for Patients, Their Families & Care Partners
Saturday, September 12, - Online and In-Person in Stanford, CA

Cancer Support  Community of Greater Philadelphia

Saturday, September 12, at 4100 Chamounix Drive, Philadelphia, PA 19131.
Breakfast will be served at 9 a.m. with the lecture starting at 9:45 a.m. Speaker is Dr. Gerald L. Messerschmidt, the director of clinical research at Lankenau Institute for Medical Research.

Leukemia and Lymphoma Society

Saturday, September 19, Blood Cancer Conference in Worcester, Massachusetts

The Canadian MPN Network

Saturday, September 26, Patient advocacy Conference

Leukemia and Lymphoma Society

September 26, Blood Cancer Conference in Chicago, Illinois

MPN Voice

September 30, Patients' Forum, Edinburgh Register Here: http://www.mpdvoice.org.uk/get-involved/lead-a-forum/mpn-voice-patients%E2%80%99-forum-%E2%80%93-edinburgh-2015/

·The Latest News on Research and Treatment for Myeloproliferative Neoplasms (MPNs)

A Town Meeting for Patients, Their Families & Care Partners

Being diagnosed with, a rare medical condition like a myeloproliferative neoplasm (MPN) can be overwhelming and sometimes confusing. The good news is that innovations in the field are increasing the understanding of MPNs. Research advances are making a difference and improving the lives of those living with polycythemia vera (PV), essential thrombocythemia (ET) and myelofibrosis (MF).

Saturday, September 12, 2015 - Online and In-Person in Stanford, Calif.

·The Latest News on Research and Treatment for Myeloproliferative Neoplasms (MPNs)

A Town Meeting for Patients, Their Families & Care Partners

Being diagnosed with, a rare medical condition like a myeloproliferative neoplasm (MPN) can be overwhelming and sometimes confusing. The good news is that innovations in the field are increasing the understanding of MPNs. Research advances are making a difference and improving the lives of those living with polycythemia vera (PV), essential thrombocythemia (ET) and myelofibrosis (MF).

Saturday, September 12, 2015 - Online and In-Person in Stanford, Calif.


Fundraising Events


Tim’s Run

Yarmouth, ME

Sunday, September 27, 2015


Chicago Half Marathon

Sunday, September 27, 2015

Tuesday, September 1, 2015

You can help change your prognosis!


As you know, September is Blood Cancer Awareness Month. Last year, 120 MPN patients let us know what research project they felt was important by making a gift during Blood Cancer Awareness Month. After our scientific Review Board reviewed and approved a list of projects, MPN patients family members and friends choose from this list and told us where we should use their gift.


These patients directed their funds to support a small pilot study of 10 patients that will investigate a patient’s response to immuno-therapy. 


Our immune system, which fights infections, does not inhibit the development of MF. Restoring the ability of our immune system to respond to MF is the goal of this project. The interaction between two proteins known as PD1 and PDL-1 has been widely investigated and is an established approach to restore our immune system to respond to hard tumors and lymphoid cancers. This project will use a drug called a PDL-1 inhibitor that will determine a MF patient’s response to this type of therapy.  If the results of this project is successful, it could lead to the development of a new therapy for MF patients.


If you want to help change your prognosis, all you need to do is make a contribution to the MPN Research Foundation in September. Go to: https://www.givedirect.org/give/givefrm.asp?CID=12140. With your gift, you will get to vote for a specific research project approved by our Scientific Review Board during our next funding cycle.


The project with the most votes, will be designated the BCAM Research Project for 2016.


Monday, August 31, 2015

Tomorrow is the first day of September and this means it's the first day of Blood Cancer Awareness Month (BCAM).

All through September, share your stories & advice -- help us in the fight against blood cancer. We'll be using BCAM throughout September and we encourage you to do the same!

You may know someone living with a chronic condition and not know it. People with Myelofibrosis, Essential Thrombocythemia and Polycythemia Vera may not show any outward sign but they are suffering with some debilitating symptoms. Fatigue, uncontrolled itching, bone and joint pain are just three common symptoms. They know how important it is to continue to fund life-saving research into these cancers.

While the National Institutes for Health is tasked with funding medical research, their budget is often focused on diseases that affect larger populations. It is up to the MPN patient community to band together to make some noise when possible to remind people they have the ability to change their prognosis to remind people that they do have the ability to change their prognosis. During September, Blood Cancer Awareness Month, we're asking anyone who knows someone living with one of these conditions to change their FB profile image as we've seen done for so many other (worthy!) causes. . During September, Blood Cancer Awareness Month, we’re asking patients and anyone who knows someone living with one of these conditions to change their Facebook profile image as we’ve seen done for so many other worthy causes.

This is meaningful to a population of people living with a rare cancer, but it isn’t all that we’re asking people to do. Make a donation today: (https://www.givedirect.org/give/givefrm.asp?CID=12140) and share with your family and friends that you are making a difference and want them to  make some noise to help you change your prognosis. We need to make everyone aware that there are people in our community fighting to find better treatments and cures.

These are some tiles you can use on your Facebook posts.This veers slightly into slacktivism, but it isn't all that we're asking people to do, and it is meaningful to a population of folks with rare disease. So change your profile pic, make a donation to support research (https://www.givedirect.org/give/givefrm.asp?CID=12140 if you can) and just know that there are people out there fighting to find cures and better treatments and a greater understanding of what ails you (and what may ail you one day). ‪#‎BCAM