I’ve had ET for 32+ years and probably longer just undetected. I am a Vietnam Veteran who was exposed to Agent Orange from 1968 until my tour of duty ended. After my ET was diagnosed I filed a claim in 1990, and the VA handled it very poorly, especially back in the early 90s. After many years, the claim was officially denied, but I tolerated Hydroxyurea and got on with my life.

Fast forward to just 4 years ago and a phone conversation with a woman named Ann from an MPN advocacy group. What an education I received that day. I was enlightened and realized I was being fed bogus information regarding MPNs and veterans for too many years. In 3 short weeks, I was attending a conference at the Marriott in St. Petersburg, Florida, and discussing MPNs and my ET with a specialist from the Moffitt Cancer Center. I now see Dr. Kuykendall annually at Moffitt in Tampa supplementing my VA appointments.

Sincere heartfelt thanks to you MPN Advocacy and Education International for the warp-speed education and reigniting my motivation to reengage with the VA. I did a bunch of research, obtained new Nexus statements from the Oncologists linking Agent Orange (AO) exposure to my MPN, and found numerous medical journal articles regarding MPNs and toxins. I submitted a new claim in 2019 and provided a detailed 3+ decade medical summary with new supporting resource documentation. As expected, my new claim was summarily rejected and kicked to the curb. The VA indicated the reason for denial was that nothing new had been submitted with the claim, go figure!

I naturally appealed the case and finally had a hearing with an appeals board judge in July of this year, 3 years after my initial claim. The judge seemed irritated and appalled the VA claim’s reviewer totally dismissed and ignored all of my supporting documentation, including nexus statements from 2 oncologists supporting the link between AO exposure and my ET.

I just received this past weekend the official VA letter indicating my claim and appeal has been granted. Again, many thanks to MPN Advocacy and Education International for emboldening me to reengage the VA.

It is unfortunate the VA has all the leverage in the MPN cases. As I discovered, even though there are probably hundreds of successful claims for MPNs, every case is handled individually and goes back to square one. So, unlike a conventional court of law, precedent is not taken into account and the entire burden of proof is on the veteran. The level of a veteran’s persistence and determination, individual skills for record keeping, and obtaining all the appropriate documentation over many years, govern the outcome when battling the VA bureaucracy. Thank you for being a large part of helping me navigate the maze.

Sincerely,

Lawrence M.

By Mayra D.

My Primary Myelofibrosis journey started on a festive Cinco de Mayo in 2015 while I was at work. Without any warning, I started to feel sick to the point that I almost collapsed at my desk. I still remember this incident like it was yesterday. I was sweating and had an awful pain in my lower back that kept me out of my chair. I had very severe discomfort in my upper abdomen that was not an ordinary stomach pain. At that moment I knew I was struggling health-wise. I was feeling so weak and so out of balance, things I had never felt or experienced before in my life. After this scary episode, I was rushed to the ER. When I got to the hospital, I was not able to walk, and breathing was very difficult. Even holding my cell phone was a challenge. I was admitted right away due to the fact that my hemoglobin was very low among other things. After a bunch of blood transfusions, IV treatments, and everything in between, the doctors were able to stabilize my condition. After a week I was released from the hospital and started what I called ‘My Health Crisis Path’.

I started to see an Oncologist/Hematologist on a regular basis. One year later, I was rushed to the ER once again. At first the doctors thought I was pre-menopausal and that was the cause of the anemia.  No, it wasn’t!  The severe night sweats, the awful skin itching, especially after taking a shower, the painful feet, and leg cramps at night while in bed, and the severe anemia, were all part of a few of the new symptoms I was experiencing. Overall, my health was not improving, and I was feeling weaker every day. After a year and a half of trying new treatments with no diagnosis, the Oncologist/Hematologist team decided that the next step for me was a bone marrow biopsy. Everything became crystal clear with my ‘Jak 2 Mutation’ and the finding of Primary Myelofibrosis (MF).  

This health crisis of mine impacted me and my entire family.  My husband got so overwhelmed he even lost his job. I was forced to resign from my job and my husband losing his caused a great struggle financially. It was okay, and we managed together as a family, but having him by my side every step of the way was more important and something money can’t buy.

On the other hand, my daughter, who was only 14, felt like she was losing her mom. She reached rock bottom not only emotionally but academically.  Today I can say joyfully my daughter is now 21 years old and is a successful college student attending a State University. Through all of this, we saw a psychiatrist and had a few counseling sessions in order to help us individually and as a family cope with this unexpected health crisis. It has helped us with the healing and moving forward process.  Our daughter once said: “We are a family no one left behind.”

I used to donate blood and today I am on the other side of the chair. My driver’s license even says that I am an organ donor. Slowly but surely, I started to accept the fact that I suffered from a rare chronic blood disorder. I had two options in front of me, either feel sorry for myself and do nothing about it or go out there and make a difference. I chose the second option. It was not an easy task. In the beginning, I felt alone and confused, and I didn’t know where to go for help, support, and answers. When I heard the word ‘cancer’ for the first time it was a feeling I can’t explain. But this didn’t stop me. 

Being a former graphic designer, I was used to putting on a creative hat, so I knew what to do next. I began by researching about MPN in general. In the process, I came up with what I called ‘My 4 Daily Elements’: Chemo-Tablet Treatment, Anti-Inflammatory Nutritional Meal Plan, Routine of Exercise, and Mindfulness (I want to point out that when I started this health journey there was not much guidance like there is today). A few years ago, I received a couple of certificates in Modeling and Acting from a local school, so I decided to take advantage and use these tools. This knowledge and experience are my platform for cancer awareness. Today I’m proud to say I’m a member of a Cancer Support Community at the cancer institute in Orlando, FL. I’m also a member of MPN groups on social media. I was interviewed a couple of years ago and an article of my journey was published in Prevention Magazine. What an honor it was being able to speak about this rare and chronic blood disorder. We may be a small group, but our voices can make a big difference.

I am also the voice in the Latino community. I spoke on a local radio station where I was able to bring awareness to Central Florida. In my message I let the listeners understand that talking about cancer doesn’t make you a victim or a weak person, it makes us stronger by informing others. I even asked one of the CSC-Mental Health Therapist to join me for another live radio chat so we could talk about integrative medicine and what it offers the cancer community.

Next month, I’m going to attend my first meeting as part of the Patient and Family Advisory Council at Orlando Health. In December I’m also going to be participating in the Sea World 3 Mile Reindeer Run for pediatric cancer and bone marrow transplant programs at AdventHealth for the second year. Sharing my story is very important to me. If I can shed light, hope, and support to others then my mission is accomplished. “ME with a Purpose.”

In 1992, I was a Technical Service Representative for a major chemical company, working with clinical laboratories, when I learned through my yearly medical checkup that my platelet count was significantly elevated.  A CBC confirmed what I suspected, essential thrombocythemia (ET). “Enjoying” the first of many bone marrow biopsies proved the diagnosis to be correct.  I met with a pathologist friend and he explained the prognosis.  Except for the elevated platelets I had no other symptoms.

Fast forward to 2004.  I’m having bloodwork checked by a hematologist prior to minor surgery.  I still had no physical symptoms of a myeloproliferative disease.  He came back into the waiting room and announced, “You have morphed into myelofibrosis.”   I didn’t want to believe it, but I knew as a certified medical technologist, MT(ASCP), that the cells don’t lie!  Years of nervous waiting followed, until in 2009 I began to experience terrible pruritis and increasing fatigue.  It was time to move to the next step.

I checked with Mayo Clinic in Scottsdale, Dr. Reuben Mesa, and with M.D. Anderson in Houston, Dr. Srdan Verstovsek.  Sure enough, the myelofibrosis was progressing and I was positive for the JAK-2 mutation.  “Dr. V” told me that a new Phase III study was to start, and that an oncologist/hematologist in San Antonio was enrolling in the study.  That was good news.  San Antonio was much closer to home!

I found my hero, Dr. Roger Lyons, now retired.   After more bloodwork, more bone marrow biopsies, he thought I was a good candidate for the Comfort I study, the first Phase III ruxolitinib study.  It was of course a doubleblind study, but by the third week of the study I knew that I had not drawn a placebo!  The itching began to cease and I felt normal. I stayed in the study through completion, and continued on what came to be called Jakafi for quite a while after.  It was a miracle!  The first drug successfully developed to treat myelofibrosis!

Then there was a problem.  In 2018, I began to develop growths on my nose.  No one suspected it had anything to do with Jakafi. When every dermatologist had exhausted the list of probable diagnoses, Dr. Lyons gave permission to discontinue the Jakafi to see what would happen.  Again, as when I started ruxolitinib, I knew very quickly that Jakafi was the culprit.  Not good news, but the positive effects of the Jakafi stayed with me for over two years.  Luck is really on my side.

Pruritis began anew in 2020, my white blood count had begun to increase, and Dr. Lyons had retired, but fortune smiled again.  Dr. Mesa, who I’d seen years ago at Mayo Clinic Scottsdale, had come to the University of Texas Health Science Center San Antonio as the head of a new partnership with M.D. Anderson Cancer Center.  As my new doctor he suggested we try Jakafi again and adjust the dose as required.  Now I take 20 mg Jakafi daily.  I’m feeling well, considering my 82 years.

My counts are stable, no anemia, no thrombocytopenia (low platelets) and I am a “rare bird” with a diagnosis of chronic lymphocytic leukemia, also stable requiring no therapy at this time.  I did have one significant physical finding and that is an enlarged spleen known as splenomegaly. I can feel it and yet it does not interfere with my appetite or activities. I say “did” because after many months of visiting numerous East Coast MPN specialists, I decided to begin a Jak2 inhibitor at a moderate dose of 10 mg twice daily. Almost immediately my spleen decreased in size and again I am fortunate to not experience any untoward side effects. I am, of course, aware of the literature that suggests that Jak2 inhibitors may predispose to an increased number of unfavorable mutational changes but my MPN specialist does not support that viewpoint.

I have also been advised that someday in this Jak2 inhibitor may lose its beneficial effect for me and at that time (barring new advancements) I will likely need to proceed with an allogeneic stem cell transplant. Father time is not in my favor. Transplants for those over 70 years old are risky at best and in 3 months I turn 65. Even now, the data suggest a 20 percent mortality in the first year, that means one ini five people die. So pulling the trigger on a transplant is a monumental decision. Oh well…

For now, I feel well and try really hard to believe that my future will work out well for me. Because really, in the final analysis, what other choice do I have?