Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

Share this:

Aug 26, 2011 · 10 Replies

Living With Myelofibrosis (Part 3 of a 4 part-series)

By Susana Shephard @susanashephard

Patricia Wagnerby Patricia Wagner

Thanks for sticking with me! In this entry, I’ll be talking about what is involved in being your own advocate. I believe that for myself, I would not be alive to write to you now had I not realized that I am in charge – not the professionals whose help I seek.

Initially, I looked for information at my local library. Everything I found on the subject was brief and grim. Eventually, I found a small online support group. We were all in the same boat: we didn’t have knowledge of our disease, how to treat it, or who could help us. In comparing our situations we began to pull together some of the answers. As the support group grew, we even developed an internal list of the doctors we trusted.

The group, MPD-NET, has now grown to several thousand members and its archives go back to its beginnings in the mid-1990s. Its founder, Joyce Niblack, has since passed on but her legacy continues through the group’s current leadership and through bi-annual conferences. As for me, had I not reached out to fellow patients through this I would not have learned the things that would later keep me alive. On occasion, it was difficult to read the sad stories. However, it was essential for learning of new developments that could affect my quality of life, or very life itself. Also, it helped me when I could share my own experiences with others.

Over the years since my diagnosis, I continued to research medical journal articles for the latest studies and treatment approaches. I used these with doctor visits, and changed doctors whenever I felt I could receive more competent care elsewhere. Not living near any of our experts, I flew annually for a consult and bone marrow biopsy. I then asked a local hematologist to implement the treatment plan prescribed by that expert, and to regularly monitor my status. If my local hematologist was uncomfortable with this, I sought another.

I am now fortunate to have one of the foremost experts on Myelofibrosis as my local hematologist, Dr Ruben Mesa of Mayo Clinic in Arizona. Under his care, I’ve switched my treatment from regular Interferon to Pegasys, a time release version of Interferon, and the side effects from medication have been reduced for me.
Regarding the issue of chronic fatigue: I have learned that there are no pills and no pep talks that will solve this. Only exercise does!

In my case after years of MF, I needed 12 weeks of physical therapy to get me into good enough shape to even attempt a 10 minute daily walk. Now I depend upon regular exercise to free me. Until you can achieve this, you will have to pace yourself. For me, pacing meant having only one activity per day, interspersed with several days of total rest.

For me, it has also helped to simplify my diet. I’m not alone in finding health benefits in keeping processed foods, grains, sugar and dairy at a minimum. I look for organic sources where possible. Who wants to add toxins to a body which already has enough to deal with? And who wants to invite further health problems such as diabetes, obesity, high blood pressure or high cholesterol? Not only am I avoiding these complications, but improving my ability to cope with myelofibrosis.

To read "Living with Myelofibrosis", Part 1 and 2:

http://sharing.mayoclinic.org/2011/08/22/living-with-myelofibrosis-part-1-of-a-4-part-series/

http://sharing.mayoclinic.org/2011/08/24/living-with-myelofibrosis-part-2-of-a-4-part-series/

Related Diseases
Related Departments

Tags: Hematology, myelofibrosis, Ruben Mesa

Sue likes this
pbertwell

Posted by @pbertwell, Aug 20, 2015

I have just been diagnosed with ME and would like a support group. I was very happy to find this article!

nicholas

Posted by @nicholas, Mon, Feb 15 at 7:42pm CDT

Pbertwell. Just diagnosed as well. Any update?

pbertwell

Posted by @pbertwell, Mon, Feb 15 at 8:29pm CDT

Actually it is my husband and I am doing research for him. He is getting ready to begin Jakafi as long as his platelet count is up this week. He has not had many symptoms other than leg pains and occasional night sweats. How about you

nicholas

Posted by @nicholas, Mon, Feb 15 at 8:34pm CDT

Just diagnosed. They took a series of blood tests and I return to USF
Moffitt in Tampa for results. Dr. Padron seems very sharp and specializes
in this disease. My hemoglobin is below the range but I do not have many
symptoms yet. I am 56. Any advice? Thanks!

pbertwell

Posted by @pbertwell, Mon, Feb 15 at 8:44pm CDT

  Have they done a bone marrow biopsy? I think they have to have that to make a definite diagnosis of ME. Dennis is 66 and has never has any medical problems. Do you know what your platelet count is?

nicholas

Posted by @nicholas, Mon, Feb 15 at 9:03pm CDT

Yes. Scarring was present on the biopsy. Platelets are 347? I think I am
okay there. Very spooky disease.

mswilson

Posted by @mswilson, Fri, Jun 10 at 6:21pm CDT

I've read your first 3 entries, trying to find number 4. How can I get to it?

jroche

Posted by @jroche, Tue, Aug 23 at 1:51pm CDT

My husband has been diagnosed with mylelofibrosis and I am scared out of my mind, he started the pill jakafi and we had to stop it dropped his platletts into lower 20 had to have 4 units of blood and plazma...been looking for food to feed him any help and advice we have read your 1 and 2 he is walking and moving....and its hard because as you know sooo tired...please help we are suppose to go back on this pill jakafi soon with lower dosage....I have been feeding him light cheese crackers fruit started him on b12 just please any advice

Edited: 08/23/2016 @ 1:52pm

nicholas

Posted by @nicholas, Fri, Aug 26 at 7:28am CDT

Slowly reduce your jakafi.

HoytFinnamore

Posted by @HoytFinnamore, Sat, Aug 27 at 8:01pm CDT

Unfortunately, we can't diagnose conditions, provide second opinions or make specific treatment recommendations through this correspondence.

If you would like to seek help from Mayo Clinic, please call one of our appointment offices (Arizona: 800-446-2279 Florida: 904-953-0853 Minnesota: 507-538-3270).

If you would like to connect with an online community where you can share your experiences, find support from people like you, and receive trustworthy information from Mayo Clinic experts, visit: http://connect.mayoclinic.org/.

Please login or become a member to post a comment.

Contact Us · Privacy Policy