International MPN News, Science & Opinion

TSR — July-Aug 2015

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Need a hand?  On-line support 24/7 right on your smart phone.

That’s the promise CanSurround offers with its suite of sustaining, encouraging, and informative applications that include exercises, a journaling option, checklists,  connections to your private support network and mood boosting messages, videos and soundtracks.

Meg Maley (l.) and Jill Teixiera, CanSurroud

Meg Maley (l.) and Jill Teixeira, CanSurround Founders

Being alone with an MPN can be a frightening experience when you wake up uncertain and worried at 3 in the morning drenched in sweat.  What if you could reach for your smart phone or mobile device and call up a helpful meditation or other exercise?  Or open a page to journal your experience, or review a checklist in your library or hook up with your private support group? You can find the details on its website here:  http://cansurround.com/

The folks behind CanSurround, Jill Teixeira and Meg Maley, both RNs,  have been doing cancer patient support work for a lot of years before deciding the time was right to focus on web-base support for cancer patients.  They’ve consulted with advisers to organize a B corporation — a for profit corporation with a social mission — to attract like-minded investors.  (One of their early advisers is Kris Vaddi, key scientific developer of Jakafi at Incyte.)

Can the kind of on-line support offered by CanSurround measurably relieve MPN Related Fatigue (MRF) by addressing underlying anxiety, stress and depression?

It’s too early to say but this is clearly a well constructed attempt to provide instant psychological relief when most needed.    The product won an international competition in Paris earlier this year and will be presenting at  Stanford X in the fall.   The critical issue is whether or not CanSurround will be able to engage MPN and other cancer patients on an on-going basis.

CanSurround plans to roll out its system this Fall. Right now it’s still rolling up to the launchpad, fueling up and tweaking its various systems.  If you can’t wait for the prime time version, you can enroll in the beta test by emailing Jill for an invitation to join:  Jill@cansurround.com  (Did we say CanSurround is free to patients and caregivers?)

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Help yourself and fellow MPN patients.  Get off your tush and hike, ride. swim or climb… 

Dr. Ruben Mesa has told us a million times how good exercise is for us, how it beats back depression and fatigue, gets our blood and juices moving. But did you ever think how you can turn that same good stuff into raising cash for critical MPN research?  Julie Libon did.

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Julie, an MPN patient, entered the history books by  raising $10,000 for the MPN Research Foundation so far in advance that she and her HikeMF group just kept on going.  By the time the go-at-you-own-speed hike was over, HikeMF delivered over $20,000 to the Foundation’s William Crowley.  (That’s Julie, standing center, with husband Bob’s arm around her surrounded by family and friends.)
The idea of getting out to hike or ride as a means of supporting our MPN community is contagious.  Julie’s childhood friend, Ron Lubin,  planned to ride in the Pan – Mass Challenge, a 190 mile bike ride in Massachusetts to benefit the Dana-Farber Cancer Institute. After HikeMF, Ron he decided to ride for his friend Julie to support myelofibrosis research. He directed donations be made to the MF research fund under Dr. David Steensma at the Dana-Farber.In two days he has raised over $2600.
Sure it’s a feel-good story. But don’t just sit there  As patients and caregivers we too can get outdoors and involve our friends and family in an event that raises vital MPN research funds while benefiting from the fresh air and exercise.  Want to know how?  Just ask Julie.
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Do you have an opinion on when blood transfusion works best for you?

Professor Claire Harrison and her associates are exploring blood transfusion options for patients and would like to hear from you.

The question being explored by researchers is: “Should we schedule transfusions to achieve better control of anaemia than we presently do?  claire ash vidThis approach is labelled a ‘liberal’ approach to transfusion. Adopting a liberal approach to transfusion may allow patients a better quality of life and help to reduce the burden of symptoms.  On the other hand it may prove to be inconvenient and of no real benefit to the patient.”

You can voice your opinion  Take the survey here.   https://www.surveymonkey.com/s/BWM7GVZ

finger pointing small And as long as we’re already over in the UK there’s been a schedule change for the July MPN Voice patients’ London forum from July 8 to Friday July 24thThere are no changes to venue or times, it will still be held in the Robens Suite, 29th Floor Tower Wing, Guy’s Hospital, Great Maze Pond, London, SE1 9RT.  Registration is from 5.30 pm, the forum is 6 pm – 9 pm.  Information: Email address: info@mpnvoice.org.uk

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This Saturday another Patient Power Town Hall Event unrolls.

This time it’s in Chicago and features Washington University’s Stephen Oh and Northwestern’s Brady Stein. pp date poster Sponsor’s are picking up the tab so the day’s session is free.  And if you don’t plant to find yourself in Chicago this weekend, you can still participate by registering for the live stream.Click here for the poster and details. This sponsored event is free to patient and caregivers.

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You can register now for CR&T’s  8TH International MPN Patient Symposium

The 8th International Patient Symposium on Myeloproliferative Neoplasms, presented by the Cancer Research & Treatment Fund (CR&T), will be held on Wednesday, November 4 in New York City.  According to CR&T “Patients and their families who attend this full-day event will learn about the latest research developments CRT part posterand treatment practices, and participate in disease-specific Q&A sessions. ”

The complete schedule of the day’s events, speakers and further details are here.   For details and to register online, click here, or call CR&T at 212-288-6604.

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You’ve got a friend at the FDA.

Maybe more than one. While talking to  Deborah Miller, PhD, RN, about the Patient Representative Program  a whole world of Patient services emerged.  Deborah Miller is manager of Patient Communication over at the FDA’s Office of Health and Constituent Affairs (OHCA).  She’s also editor of their Patient Network Newsletter.  And, product liaison for oncology and hematology,  so she definitely knows what we’re up  against.

Most of all, she and her colleagues are committed to help…both in accessing resources and threading our way through the clinical trial system.  Here’s the page you might want reach first to get yourself oriented. Note: it contains a rare phone and email contact.  It’s the Patient network Web site:  http://www.fda.gov/ForPatients/default.htm.  We can also register for a free Patient Newsletter  or listen to one of several webinars while viewing FDA expert presentations.

There are times we or a loved one need access to investigational drugs. These are meds that are promising but not yet approved by the FDA.  Commonly known as compassionate use of meds, the FDA provides a path to help acquire the drugs under its “Expanded access” program. Here are two helpful sites, one laying out the ground-rules, the other providing the necessary application information.

Although the FDA doesn’t get involved directly in regulating drug prices — like who does? — the OHCA might be able to direct us to organizations that do help cover co-pays and other expenses.  Deborah Miller maintains a list of resources she will make available on request.   Now that’s a friend.

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You can read the Stem Cell Transplant special issue of the Q right here!   Plus Archives:   How I treat MPNs? …Silver, Mesa, Hasselbalch, Harrison … definitive paper on  Aspirin, Platelets and Thrombosis… by J.J. Michiels Interferon instructions for my patients… H.C. Hasselbalch MQJ3header line

The List and Map of 174 Patient-Recommended Hematologists

The MPNclinics – 302 answers to 141 Patient questions… with Index

mGEN-logo FINAL tightThe MPN Genetics Network

The Catalog of MPNforum Articles. ..

Subscribe to MPNforum

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Tell your story, express yourself, share your experience in your MPN magazine. You can add your comments to MPNforum articles, list your Blog, or write an article. (We’ll even help you get started.)…Letter to the Editor

For information

Contact: ourMPNforum@gmail.com

© MPNforum, LLC , MPNforum.com, and the MPNforum Quarterly Journal 2015. MPNforum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.  Excerpts and links may be used, provided that full and clear credit is given to MPNforum.com with appropriate and specific direction to the original content.

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Comments on: "TSR — July-Aug 2015" (4)

  1. Ron Russell said:

    We “have a friend at the FDA” did not pan out. The email address they provide for patients to write them does not work. It is printed as ocod@fda.hhs.gov I copied and pasted it from its site and it failed.

  2. Kenny Sipes said:

    As many know, I believe whole hearted in staying active with PV. Again as Most know, I recently tried my hand at the Ultra Endurance race in Kansas, the Dirty Kanza 200. This years event (10th Anniversary) was rated at the hardest that it has ever been. I trained for 6 months for this one event and actually didn’t plan on doing any other racing for 2015. The DK200 is 200 miles of gravel road riding with a 20 hour max finish time. The big killer this years wasn’t the 20m mph wind or the knife sharp flint rock, it was the 4 miles of muddy roads that we had to carry our 30 – 35 lbs bikes. After 125 miles, my body said enough is enough and I quit. The 6months of training didn’t prepare me for what I didn’t do. My #1 issue was that I didn’t replenish nutrients back into my body. I under estimated my ability to push thru things that my body was saying. My Hematologist was on board for me as well, he allowed my counts to be as high as 50 without a phleb. I already cant wait to try it again next year.

  3. An earlier version of Julie Libon’s HikeMF story had her listed as the Caregiver. She is the Patient and a shining example of how we can take control of our lives and influence the future despite our MPNs. Our apologies for the error…and gratitude for the opportunity to underscore how inspirational and valuable her contribution and that of her family and friends has been to us all.

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