A Patient’s Story: How I Diagnosed Myself

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My journey with essential thrombocytosis (ET) began in May 2016.  Although I am sure I had it for at least four years prior to to that.  I self diagnosed myself after noticing my gums were bleeding when I brushed and flossed.  I am a dentist, so how could this be?  I have immaculate oral hygiene, floss and brush at least two times a day and get my teeth cleaned every three months.  A little voice from one of my lectures in dental school went off in my head;  I recalled my professor’s words, “in the absence of gum disease or dental issues, bleeding gums can indicate a blood cancer and you should refer your patient to their doctor immediately.”  I didn’t think I would be the one to need the referral.  After some research on Dr. Google I put the puzzle pieces together.  I had tingling fingers and toes for at least a few years and had actually gone to a neurologist who tested me for carpal tunnel syndrome.  Again, being a dentist, that is not unusual to get carpal tunnel. However, after that diagnosis was negative, I just brushed it off.  I had also had major hives a couple of years ago all over my legs,  I had gone to an immunologist and she said it was allergies and put me on allergy shots.  After they didn’t go away, I had gone to a primary who told me my symptoms were stress related, “psychogenic” as he called it and I needed to manage my stress.
Six months before my diagnosis, I had a case of vertigo.  Again, I went to my doctor who reassured me it was a viral infection and it would go away in a few days.  I never had vertigo again so I believed him.  No blood work or additional testing was done.
However, the bleeding gums and my professor’s voice was what made me suspicious.  I started researching blood cancers and put all my symptoms together for what pointed toward ET.  I took charge of my own health and went to a hematologist and asked him to test me for JAK2 mutation.  Sure enough that came back positive and my bone marrow biopsy confirmed it.  Platelets were in 900 range and I just didn’t feel like myself.  He insisted I start on Anagralide that day and that I was going to stroke any minute.
I wasn’t comfortable with his rush to treatment as I had read a lot on ET prior to my diagnosis, so I knew that Anagralide was definitely not first line of treatment and neither is Hydrea if you are at low risk like me.  I am otherwise very healthy, work out religiously, grow my own vegetables and juice fruits and vegetables at least 5 times a week. I am not a smoker and I don’t  drink. I have a normal BMI and have no other health conditions.  I ran out of that office and went to UCSD in search of a doctor that actually listens.
My new doctor suggested that I start on a low dose Hydrea immediately and I declined.  I had research and information on my side-I was under 60, platelets under one million and otherwise very healthy with no other cardiovascular issues or dispositions.  So I declined once more and she agreed to monitor me.  After 18 months, I had a lot of headaches and could hardly feel my feet and my hands felt horrible, almost numb.  Again, I am a dentist, so this scared me and I agreed to do treatment but wanted to try Pegasys instead of Hydrea.  My doctor was very reluctant about Pegasys because she believed the side effects are not worth the benefits.  I produced a lot of studies and literature on how it works better for some people and in my mind I would rather be on Immunotherapy rather than Chemotherapy.  I did take Hydrea for one month while awaiting insurance authorization for Pegasys and I knew immediately that I was right in my intuition. It wasn’t the right treatment for me. I was nauseous all the time, couldn’t sleep, had major brain fog, red dots on my chest and legs, my nail beds even hurt.
The answer to my symptoms by a different doctor at UCSD was to take more drugs.  One to help me sleep, and an anti-nausea medication.  I am very much against taking drugs if I don’t have to so this didn’t sit well with me.  Not to mention, they wanted to increase my dose every week since my numbers weren’t coming down the way my doctor wanted them to.  For the first time since my diagnosis, I broke into tears because I knew I wouldn’t have a quality of life if I increased my dose of 2000 mg a day.  I have a demanding job and need to have a clear brain!  When my insurance authorized the Pegasys, my doctor agreed to let me try it and I have been doing great on it at 90 MCG per week and in one month my numbers are down to 920.
I am not suggesting Interferon is for everyone because you all know we are all different and respond differently to different medications.  In some studies that compare Pegasys to Hydrea the dosing of Pegasys was so high and toxic that patients dropped out, I would too.  But at a low steady dose, it is working for me. Someday, I may have to go back to Hydrea. No one knows how our bodies respond to certain drugs long-term but for me personally, I wanted Pegasys as my first line of treatment.  I am 50 years old and 20-30 years of Hydrea ahead of me was not going to be my first choice.
I guess the lesson I have learned and continue to learn is to be your own advocate, research and study your disease.  Doctors are busy people with perhaps thousands of patients.  I only have one disease and one patient; MYSELF.  I will continue to fight for what is right for my body and luckily I have a great doctor that listens to my wants and needs. If I didn’t, I wouldn’t hesitate to switch till I found the right doctor.
 

A Mother’s Story: Coping with a Sick Child

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Young MPN patient “Jedi” with his companion Chewy

In the opening credits of the television show “The Fresh Prince of Bel Air” Will Smith sings, “This is the story/all about how/my life was turned/upside down.” This article is the story all about how OUR lives were turned upside down when our son, who we affectionately refer to as a “Jedi” because of his special blood, was diagnosed with a Myeloproliferative Neoplasm (MPN).

Our story is probably different from other adults/children with an MPN because Jedi wasn’t extremely sick before we discovered he had an MPN. For about two years, Jedi had experienced a variety of unexplained health issues — random fevers, flu, an estimated seven times over the preceding twelve months, and extreme pain in his legs. At the time, I attributed these conditions to allergies, or growing pains, things that boys normally experience at that age. This soon changed, however, when I took him in for his annual physical exam. The doctor suggested a blood test for Jedi after hearing about his recent health issues. I am not one who immediately agrees to testing, but I agreed when the doctor said to me, “if it was my son, I would do the test.”  A week later, the doctor called and told me the blood test was contaminated and to immediately re-test Jedi, which we did. Two weeks later, I received a phone call from him, who told me he believed Jedi had Essential Thrombocythemia (ET), a condition I had never heard used before. His doctor then recommended we see a specialist who specialized in ET. It can be hard to diagnose a child with a MPN, because it is so rare. However, the doctor was a General Practitioner and had seen it in other adults. Thus, Jedi didn’t get extremely sick before diagnosis as so many of the children do.

The following Monday, I called the recommended specialist. The scheduler answered the phone by stating the name of the organization, which was “something something oncology.” Her words, more specifically one word – oncology – startled me. I held it together long enough to explain who I was and to ask for an appointment. Once the call was completed, I hung up the phone, closed my door and cried. Oncology? Why was an oncologist being recommended to see my beautiful eight-year old?

The results of Jedi’s first bone marrow biopsy revealed he had the JAK2 gene mutation. Jedi asked what a gene mutation was. I frantically tried to explain a gene mutation to my child. My first instinct was to tell him he was a mutant. I knew his next question was going to be, “What is my superpower?” I didn’t have an answer for that question, but realized he is like a Jedi, who has midi-cholorians, or special blood. That is what I explained to him.

Pediatric MPN Specialist Dr. Nicole Kucin, MD, MS, New York Presbyterian Hospital/Weill Cornell Medicine. 

After initial difficulty finding a specialist who understood MPNs, we now have a talented team of specialists. He sees a local doctor every month. He also sees Dr. Nicole Kucine, MD, MS, an MPN specialist with Weill Cornell in New York City, click here to learn more. Dr. Kucine is performing a study on children with MPNs through the National Institutes of Health (NIH). If you have a child who has an MPN, I highly recommend contacting her. Last, Dr. Srdan Verstovsek (aka “Dr. V”) who is affiliated with MD Anderson in Houston, Texas, is part of the team. He is an Adult MPN specialist but performs a lot of work related to the JAK2 mutation. He has agreed to consult with Jedi’s Pediatric Hematologist, Dr. Michael Rytting, who is also at MD Anderson. As a result of Dr. V and Dr. Rytting’s recommendation, we have changed Jedi’s treatment plan from Hydroxyurea (HU) to Interferon.

In determining the appropriate treatment plan, some questions we asked were:

What are our options for treatments? What is the difference between each treatment? Are there timeframe limitations for each treatment? (The effectiveness of one of the drugs used to treat ET is limited to 5 years. That was information I did not know but extremely important to know given Jedi’s age – now nine years old!)

Are there any other patients using this same treatment? Have they experienced any side effects not listed on the medicine? Is the basis for our understanding of how this treatment affects the patient based on a different disease? For example, HU is commonly prescribed to patients with sickle cell anemia. Some doctors’ understanding of how HU impacts a patient is based on the their patients who have sickle cell anemia, which is a completely unrelated disease.

Additional questions to consider:

Is there a way to mitigate side effects?

Can we start with a lower dose and see if it works?

How long will it take for the medicine to start working?

What are the risks of not taking any medicine? What are the risks of taking this medicine?

Is there any research being done on these treatments?

In finding a local doctor, some questions we asked are:

Are you willing to work with other specialists in this field of medicine?

How do you propose to communicate with them?

Are you willing to follow the specialist’s instruction when treating my child?

Are you willing to consider diet as part of the treatment?

There a few ways to connect with other with MPN patients. I have gotten great information from Facebook support groups. Attending MPN conferences is another way to become informed and connected. We attended an MPN conference in February. Listening first-hand to specialists providing updates in the field and answering questions was like drinking from a firehose. Thankfully, MPN Advocacy & Education International posted the videos on the website, which allowed me the opportunity to repeatedly watch them to fully absorb the information the specialists provided, view conference videos. Being able to converse with the attendees at the conference was also extremely helpful. They shared their first-hand experiences and provided insight into what my child is going through. It is more difficult for a child to describe how he or she feels because what he or she experiences on an everyday basis is their “normal.” By sharing their experiences with me, the attendees were able to help me find the words to help my child describe how HE is feeling.

Part of this disease is a feeling of loneliness – for Jedi, Jedi’s brother (our other son), and my husband and me. Unlike more common disorders, finding and becoming part of a support group can be difficult for those with an MPN—especially since it is so rare in a child. That is why it is important for us to participate in conferences whenever possible. This Fall MPN Advocacy & Education Int’l is hosting a conference especially for children and young adults with MPNs. This is a fantastic opportunity for both parents and children to meet and get to know one another. We plan to attend this conference. Learn more about the Pediatric MPN event.

Finally, a plea to adults with an MPN. Please consider using the resources the MPN groups has provided, such as the tool that tracks symptoms. I know it can be concerning to share that information with a third party. (Believe me, I am wary of doing that myself.) But, any information YOU provide will help those that come behind you. Working together, we can collectively help each other and future generations better understand how to combat and defeat these diseases.

 

 

A Veteran’s Story: The Frustrations of Filing a Claim with the VA

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By Wayne E.

MPN Patient and Vietnam Veteran Wayne E.

I served in the USAF Security Service, 6924th Security Squadron, stationed in Da Nang, Vietnam for one year (1970-1971) and was exposed to the deadly Agent Orange/Dioxin. In 2007, after a simple pre-op blood test, I was diagnosed with essential thrombocythemia (ET). Upon further study I was told I had an incurable, but manageable, blood cancer, coupled with a gene mutation (JAK2). The word cancer scared me. I had never heard of ET and I was at a loss for what to do. I didn’t know where to go next. After much reading about these potentially deadly diseases, I found out I was one of many Vietnam Veterans who had an MPN.

In 2011, I filed my first claim with the VA. Until this filing, I was unable to get any substantial information from my primary care physician (PHP) or my hematologist/oncologist, as to what may have caused or contributed to my ET. They knew virtually nothing about Agent Orange. I contacted the National Institutes of Health, The Centers for Disease Control, and as many online medical sites as possible, all ending with a bigger question mark. Nothing could be explained to satisfy my inquiry.

It was by chance that I connected with a most remarkable group, MPN Advocacy and Education International. I could never thank them enough for the compassion and the understanding they extended to me.

After my initial rejection from the VA, I filed three more times and each time I was denied because MPNs are not on the “presumptive” list of Agent Orange-related illnesses. The same message I kept getting was I needed “clinical rationale” to support my claims. My doctors have not been able to provide me with this needed information. I don’t know what to do today. I understand there are many Vietnam vets that have won their appeals and now get benefits, but there are many others who were not approved and just gave up. I don’t plan to give up.

To my fellow Vietnam Veterans who may be dealing with one of these MPNs, don’t give up. If you have been denied, file an appeal. There is hope, comfort, and assistance available. With the help of MPN Advocacy and Education International.

 Learn more about filing a claim with the VA

 Learn more about Veterans and MPNs

A Veteran’s Story Told By His Wife

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Bill C. Veteran and MPN Patient

In January 2017, my husband, Bill, was enjoying his consulting business and writing a book that has been in his mind for years, when an annual physical changed everything. Some lab work was “off” according to the Veterans Administration (VA) physician so Bill sent the lab results to our personal physician, who is also our best friend. Within ten minutes after receiving it, our friend asked Bill to come to his clinic immediately.  Further blood tests yielded an initial diagnosis of Chronic Myeloid Leukemia (CML).

While we were reeling from that shock and trying to ground ourselves, our physician friend sent us to a local hematologist for additional work-ups and treatment.  Following a bone marrow test, we were further shocked to find out that the CML we had become somewhat resolved with was indeed Myelofibrosis (MF).  We sat in a dumb stupor trying to figure out what that was, how serious it was, where it came from, what we could do about it, etc.  We were encouraged to start on the only medication for Myelofibrosis, Jakafi, and were told the only drawback to the drug was its cost–$10,000/month!  We immediately started working with the VA for them to supply the medication.  After numerous telephone calls and in-person visits with both our hematologist and the VA (in a city 40 miles from our home), we secured VA support for Bill’s Jakafi.  It now routinely comes to our home in an innocuous package.  The initial symptoms Bill was experiencing responded to the Jakafi but so did the platelets and hemoglobin which are continuing to drop so we played with the dosage to, hopefully, continue to drive the white blood count down while keeping the platelet count and hemoglobin up closer to where they should be.  The drop in Jakafi was too drastic and symptoms immediately returned so our local hematologist moved Bill back to the original dosage. Symptoms once again are gone and platelets somewhat controlled but still very low. Hemoglobin is recovering which is good.

While all of this was going on, we decided, with the support of our local hematologist (who is wonderful realizing this is all about Bill and not about the hematologist’s ego), to go to Rochester, MN to Mayo Clinic to see one of the leading researchers in Myelofibrosis, Dr. Tefferi.  While there was no proactive guidance offered from this visit, we did learn that we should only approach researchers whose field of study is a fit between their interests and Bill’s current health status.  To that end, we went to Northwestern University in Chicago to see Dr. Brady Stein, another renowned Myelofibrosis researcher. He listened and answered all of our questions while assessing Bill’s fitness for ongoing clinical trials. His ultimate recommendation was for us to consider a transplant—again, another shock as we had hoped that we would have a variety of alternative treatments  Dr. Stein is concerned that Bill’s Next Gen Sequence report that showed other mutations limit the time he will have before he converts to Acute Myeloid Leukemia (AML). Since Bill is in such good health right now (ironically), Dr. Stein found him to be amongst 10% of people with MF that even qualify for a transplant consultation and while a transplant is a “rough ride” encouraged us to explore it.

To that end, we have met with Dr. Tom Chauncey who is the Program Director at the VA in Puget Sound-who along with the University of Washington at Seattle are the number one transplant center (particularly for people with MF) in the country. Dr. Chauncey was very generous with his time and counsel and offered to work with us as we continue to explore transplant options. With Dr. Stein’s support, we also will meet with the Director of the Northwestern University Transplant Program, Dr. Mehta.

Simultaneously, we filed a VA benefits claim related to Myelofibrosis, believing Bill’s exposure to Agent Orange most likely caused this illness, but we were denied.  Bill is a Vietnam Veteran having served in Quang Tri—I Corp from November, 1968 – November, 1969 and was exposed to Agent Orange/Dioxin.  While compiling our appeal information, we found numerous Citations where the VA had granted benefits for veterans (on appeal) who have been diagnosed with Myelofibrosis due to exposure to Agent Orange, so will be using that information to move our claim forward.  During the exploration for more information, we also discovered that the VA is finalizing a rule to add to the benefits structure Stem Cell Transplant coverage as well as treatment protocol to include myelosuppressive therapies of which Jakafi is one. This proposed change is set to take effect in FY18 (which begins as soon as October 1, 2017) which is exciting for veterans waiting for coverage of Myelofibrosis because, at least, some of the symptoms and associated therapies will be addressed.

MPN Advocacy & Education International continues to advocate for essential thrombocythemia, myelofibrosis and polycythemia vera to be included in the VA’s ‘presumptive’ list of illnesses related to Agent Orange exposure. Please click here if you are in the process of filing a claim or appealing a claim for more details.

Like many of you, we are sure, our world right now is exploring drugs in Phase II or III of clinical trials that are successful in producing remission in MF as well as other drug trials/existing drugs that will hold down the “blasts” that would otherwise convert Bill to AML. We are also exploring transplant centers, protocol, outcomes, experiences, etc. to get a better sense of whether that is something we even want to consider.

In the midst of all of this, we continue to work hard to enjoy our lives. Having a daughter with Down Syndrome who is now 43 years old taught us that nothing is ever guaranteed and that we would have to fight for anything and everything we wanted.  We “cut our teeth” on the fights for our daughter, Mindie, against insurmountable odds and won.  Now we are using those skills on Bill’s behalf.  While sad and scared, we remain determined that there are many, many opportunities for Bill to remain as healthy as he is today and live a long and enjoyable life beyond the current prognosis.   We know there is a lot to learn from all of you “in our same boat” and look forward to sharing stories and guidance between all of us.  In the interim, all of you touched by an MPN are in our thoughts and prayers.  Together we can change the face of these diseases!

 

 

A Patient Story: Living 32 Years with an MPN

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By Ron K.

Fortunately, my MPN journey has been a long one. I was first diagnosed 32 years ago and I know have post-Polycythemia Vera Myelofibrosis. Looking back it was almost archaic in nature. Today the progress has been immense on many fronts, not just in treatment, but with treating the patient as a whole. As many of you know, there is no exact recipe book for life with cancer and its treatment journey is unique.  My hope is that sharing some of my experiences may help someone else along the way.

There is a quote by Albert Einstein that reflects my approach to my medical journey

Learn from yesterday, Live for today, Hope for tomorrow. The important part is to not stop questioning.

Learn, Live, Hope – three good words for any cancer patient.

As those with an MPN know this is a chronic neoplasm and unfortunately there is no treatment yet to cure this illness. Some of the latest MPN and MF drugs do improve one’s quality of life and even appear to extend one’s survival, a significant milestone from what was available just a handful of years ago. Finding ways to slow or stop the progression is my only hope until medical knowledge can surpass me with a real solution.

Having a chronic cancer and having it for a long time has enabled and encouraged me to evolve into a healthier lifestyle. One does not have to change everything overnight but just evolve and continue to build healthier ways, one step at a time. While there is no evidence that a healthy lifestyle will cure me, it is something I can do and have control over.

This all started back in 1985 when I went to my family doctor with a cold and I mentioned that my colds seem to last longer and hit me harder than others.  A simple blood test began my journey.  I would not be alive today if I followed my first hematologist’s treatment plan. He wanted to treat me in a traditional manner at that time, with a radio isotope that kills off some of the marrow, they know now that treatment leads to an acute leukemia years down the road. Instead my intuition questioned this approach, since I was only 31 and I thought that I might need that marrow later in life.  I called a major metro medical center and asked for an appointment with their Chief of Hematology. Unknown to me at the time, and not commonly termed in the 1980’s, I was going to get something called a second opinion. I got an appointment and his approach was quite different. He wanted to understand me, my rate of progression, severity, etc as that would lead him to figure out how to best treat me. He even commented that the current radio isotope treatment (my first hematologist’s plan) to kill off marrow was likely going away as he saw it.

Today, I am a patient of Dr. Mesa’s. I found that they could answer all my questions. Answers to questions that my previous hematologists could not answer. They have knowledge that is very leading edge as to direction of MPN treatments as they are part of an elite group of hematologists that are making many of the MPN discoveries, designing the clinical trials and studies with other key hematologists around the world.  So my personal doctor advice is to make sure you find the right doctor and treatment strategy for you. Listen to your intuition and ask questions, seek information and acquire knowledge in your cancer and health. Expect answers or find those professionals that can give them to you. While I did not need a MPN specific doctor early on I do need one now as I am living well beyond the averages.

For me, finding the right doctor has been a key in my cancer treatment journey. Getting a second opinion is also key. What you will likely find is the different doctors will agree on the diagnosis but their treatment strategy will often be different.

I attend conferences, seminars, and special programs such as those that the MPN Advocacy and Education International puts on. I have done online webinars or conferences as well as belong to online MPN listing groups to learn and share information. I find this information to be helpful to ask the right questions to my doctors and understand what may be option in the future.

I believe support makes a difference. It is helpful to have support from your spouse, kids, parents or friends. I also find that support groups can be very helpful as well. As they can fill a support void that is missing from one’s non-cancer family and friends. This is no fault of family, spouses, or friends in that they do listen and they do try to understand and relate and they do support the cancer patient, but I have found that belonging to a cancer support group often helps to fulfill things non-cancer patients cannot quite grasp. I have belonged to both hematology specific support groups and all cancers support groups. You might want to try both and see if one works better than another.

 

As I live my life, I am grateful for every day. Everyday is a great day, just some are even better than others.  I even celebrated the point in my life where I have lived longer with cancer as part of my life than without cancer. That was at about 31 1/2 years and I had a bakery make me a cake to celebrate the occasion. The cake was symbolic of my MPN journey and view of life. I celebrated this occasion with my all cancer support group. So while cancer is a part of my life I run my life with cancer being a part of it and I do not let my cancer rule over me.  I am hopeful that a cure is in our much sunnier MPN journey. May the best be yet to come, and enjoy the day!

Tips for Caregivers

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Suggestions for being an effective caregiver

Caring for a person with cancer may seem complex and like too much to cope with at first. Depending on the person’s needs, you may provide different types of support, such as:

  • Emotional support
  • Help with medical care
  • Assist with financial and insurance issues
  • Serve as the communicator between the patient and the health care team

You may find the following tips can help you become a successful caregiver:

Remember that caregiving is a team effort. A caregiver is a member of an important team of family members, friends, volunteers, and the health care team. Each member of the team offers different skills and strengths to provide effective care.

If you are the main caregiver, help each team member express concerns, opinions, and emotions. Also, make sure that the person with cancer has a central role in all discussions and decisions, if possible. It is very important for the person with cancer to feel like an active member in their care.

CancerCare provides a special website for caregivers called My Cancer Circle.  This website can help caregivers organize the family and friends who want to help. Find other online communities for support.

Create a list of tasks. Caregiving, like any responsibility, involves tasks of varying importance. Start by making a list of all of your caregiving tasks. Then, use it to decide how to divide the tasks between friends, family, professionals, and other volunteers.

Be proactive. Being proactive means taking charge and planning as much as possible to prevent last-minute emergencies. This can also help provide a sense of control and order. Create schedules that list which relative, friend, or other volunteer is available when and for what tasks. Make sure that all of the caregivers involved have some time to be away without feeling guilty or concerned. Long-distance caregiving takes even more planning. Find out more about how to be an effective long-distance caregiver.

 

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A Patient’s Story: My Clinical Trial Experiences

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 At what point in your MPN diagnosis did you join a clinical trial?  What trial (drug) were you in?

I was diagnosed with PV in 2001.  Only on phlebotomy and 81mg aspirin until 2007 when I began hydroxyurea because I turned 60 in 2006 and was now “high risk.”  In 2009 my spleen was enlarging. I had been hearing that Interferon was best taken in the early stage of MF and might reduce myelofibrosis.  My hematologist advised me he would be having a trial with Pegasys (Interferon) and I should wait for that. I actually waited until 2012 when the trial became available.  I was now showing signs through bone marrow biopsies of secondary MF.
Did you feel as though you received accurate information getting into the trial?

Yes, I had been reading about Interferon treatment and knew I wanted to try it.  Perhaps I didn’t know how quickly I could be removed from the trial because of my worsening symptoms.
What didn’t you know going into the trial that would be useful for others to know or questions they might ask?

It would have helped to know at what point you may be pulled from the trial and what happens after you are removed.  Also, I did not know that the FDA can shut a trial down at any point due to adverse reactions to few patients.

How many clinical trials have you participated in?

I am currently on my 3rd clinical trial.  (First trial wasn’t improving my symptoms, second trial was shut down by the FDA and the pharma company decided not to proceed , and the third trial I have begun my 4th year.)

Were you able to get the drugs after the trial(s) if you were doing well?

I can continue with the drug I am currently on as long as I continue to have benefit and as long as there is funding for this drug by the pharma company, and that it doesn’t get shut down prior to FDA approval

What advice would you impart to those who are skeptical about clinical trials who are not doing well on available treatments?

What do you have to lose?  If you are currently not well, you certainly may have good results and feel better.  If you don’t show benefit you will be removed to try something else.  We do not know the future after taking these drugs.  That is a gamble we must take.

Would you participate in other trials knowing what you know now?  

If I was not feeling well and I met the qualifications, I would try again.

Marylin C. has been living with her diagnosis for many years.  She has graciously volunteered for trials not only for her own reasons, but for the sake of MPN patients and their futures.

 

The Ultimate Blood Brothers

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ronanderson

Ron Anderson

Ron Anderson, LA Support Group Coordinator, received a bone marrow transplant eight years ago.  His brother, a perfect match, was his donor.  We asked his brother to share his experience to get a donor’s perspective.

Was there ever a time, once you knew you were a perfect match for your brother, that you thought you would not be his donor?

No, by the time his doctor told him he needed a bone marrow transplant he was seriously ill and probably would not survive for very long without a total transplant.  As it turned out, my brother and I have type A+ blood and (thank God) I turned out to be a very good match for him.  I just felt very fortunate I would be a great donor and could help him.

When I told him I was willing to be his donor I thought I would be going into a hospital operating room and have doctors use needles to remove my marrow from my pelvic bone.  Later, I found out about Peripheral Blood Stem Cells (PBSCs) and a process called apheresis.  My stem cells could be collected by drawing blood out of my veins, filtering them out and the rest of my blood would be given back to me.   I was very pleased to learn about this nonsurgical method.

How has this experience changed you?

For the first time I took a hard look at my entire family’s age/health issues and felt there was a real possibility that I might not have any family members alive in the next 5 to 10 years.  That was not a very comforting thought for me.  I think this experience with Ron not only strengthened my relationship with him but with my entire family.  Since Ron’s transplant in 2009 I have tried not to take my family for granted.  Since 2009 both of my parents have passed away but I am very thankful I still have my two brothers.

What, if any, were the side effects?

The only side effects I can remember was some mild hip and shoulder joint pain issues after taking the drug Neupogen to increase my stem cell production.  It went away within a reasonable time frame (I think about a couple of weeks) after I stopped taking that medication.  The only other issue I experienced was during my hospital blood collection time when I had some tingling around my mouth apparently from decreased calcium blood levels from the filtering process of my stem cells.   That tingling totally stopped after the apheresis when completed.

Can you briefly explain the experience in the hospital?

All the hospital staff were great and they gave a very good explanation of what would be happening during my stay.  They were very caring and made me feel very comfortable during the apheresis process.

In the hospital, I sat in a comfortable lounge chair for about 6 hours a day for 2 days (because I also agreed to give extra cells to stem cell researchers) squeezing a soft ball with my hand during the stem cell collection process.  As my blood calcium levels dropped during the apheresis procedure calcium had to be replaced back into my vein which sometimes caused that vein to fail and infiltrate.  I think the worst part of the hospital stay was the restarting of new I.Vs.  I had about 4 or 5 new I.V. restarts a day and some pretty good bruises on the back of my hands and forearms by the time the apheresis was completed.  At the end of the day, a very small price to pay for helping my brother.

 

Caregiving: What I’ve Learned

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By Stephen W.

My wife was diagnosed with ET (Essential Thrombocythemia) in 2007. Since then, her health issues have varied. For several months, she will do very well with little to no problems, and then an episode that has included an ER visit on occasion, will throw us into action mode. Even our children know what is expected of them. We all becoming a caregiving team.

Caregiving has many layers. It requires endurance, listening skills, humility, open mindedness, flexibility, wisdom, empathy, managerial skills, problem solving skills, healthy choices, rest, outlets, support and in many ways, the needs similar to those we care for, except that we have to be willing to be the strength BEHIND the patient.

Endurance. There will be days when the one you are caring for requires everything you’ve got. It is easy to get burnt out. You may find yourself doing it all and feeling a bit resentful, at times. My suggestion is to get a backup caregiver. So many people offer help and we graciously decline with a thank you and assurance that we are okay. I now say, thank you and how can you help? Getting help doesn’t mean you are shrugging your responsibilities or care less about your loved one. It is a wise decision when times are tough. Sometimes just having someone grocery shop is a great gift.

Humility. Caregiving is not about you. I’ve learned to keep my place and learn from my wife and those that administer her medical care. I don’t have all the answers. My role is vital but there is no room for an ego.

Managerial skills. I never dreamed the managerial skills I learned in my career would come in handy for caregiving. Managing appointments, medical needs, insurance companies, children, household needs, and day to day care for the patient can be overwhelming without a system. When times are tough we run a tight ship with each of us knowing our role and responsibilities. Delegating is a way of life. We’ve learned to adjust quickly and as needed.

Keeping EVERYONE healthy. Parenting and caregiving for an adult are very similar. If we aren’t healthy, everyone suffers. Proper nutrition, exercise, rest, and finding outlets and support are essential. Recognize when you need a break and take it.

The Rewards. I’ve never felt closer to my wife. Our family is stronger and we know we can rely on one another. I’ve learned a lot about ET, but equally about life and love.

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A Veteran’s Story: Gaining Knowledge and Advocating

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I served in the Army during a more recent war than many of the veterans who have been diagnosed with an MPN.  I was diagnosed with Essential Thrombocythemia (ET) in early 2013. My son was only a year old and I had spent two weeks in a VA hospital while hematologists tried to rule out other illnesses. I was put on Hydroxyurea (Hydrea) almost immediately due to the aggressive rise of my platelet count. It was eventually controlled and I was sent off with a permanent Hydrea prescription.

My background in health care and my university education prompted me to research this illness and I learned a lot.  I read about alternative drugs, but the drug that stood out to me the most was peginterferon alfa-2a (Pegasys). It’s what was advised for young females of childbearing age, as it isn’t harmful to a fetus. I also learned that Pegasys is the only known drug that gives a glimmer of hope for remission. That’s when I decided I wanted to be on Pegasys. Hydrea was giving me terrible side effects.

I joined several MPN support groups on Facebook. This is probably the best thing I ever did for my condition. The wealth of information in those groups is astounding. I met many people who were very proactive in finding the correct treatments that alleviated some of their symptoms.

I was fortunate to have the wherewithal to find this out on my own.  I’m sure there are many veterans who do not or cannot advocate for themselves and are probably too tired, too sick or too confident in the VA to research this for themselves. Or maybe many of them had but had been denied, like I was.

At my visit with my VA oncologist, I mentioned Pegasys and my desire to be on it. I was told that Hydrea is the standard drug for ET and that all other patients are on it. I was adamant to get on Pegasys and was told that only Melanoma patients received it. Luckily, I had a receptive and understanding oncologist who said he’d research it first before giving it to me. After doing his own research, he agreed. I think I was the first ET-VA patient in Central Texas to be put on Pegasys. To this day, I believe I’m still the only one.

I was very lucky.  I’m sure this does not happen often with other VA physicians.  My other mission was to be seen by an MPN expert.  Making all these discoveries on my own really showed me how rare MPNs are and how unaware many VA hematologist/oncologists are about the best current available treatments.  This is my life…but not just mine, my son’s too.  I owe it to him to improve my health and extend my life.

My hematologist/oncologist agreed to submit a request to get seen at MD Anderson in Houston. I was placed into the Veteran’s Choice program and repeatedly given appointments with local civilian physician.  After letting the program know time and time again, that I wanted to go to MD Anderson, my oncologist told me it had been rejected because the VA doesn’t approve “second opinions.”

I was disappointed but grateful that, at least, I was on Pegasys. About a year later, I decided to prepare to have another baby. My VA gynecologist advised me to let my oncologist know of this. At my appointment, I told my oncologist my plans and he said he’d put in another request for the VA to cover a visit to see an MPN expert. I didn’t get my hopes up.

Sometime after, I got a call saying I was approved for two visits at MD Anderson. I saw an MPN expert who basically told me I was on the right medication (Pegasys) but that I was taking it too often because my white blood cell count was low and I was very fatigued (among other disturbing symptoms). He decreased the frequency and I felt much better with my white blood cell count being within normal range for the first time in three years. MD Anderson also tested me for mutations that the VA couldn’t perform. I had many questions answered and was finally at peace with how my condition was being handled. I was ready to move forward confidently, I felt closure.

None of this would have happened if I had been a man. The VA only approved my MD Anderson visit after learning about my intention to get pregnant. As a female, I’m a minority at the VA. There are many male vets who aren’t benefiting from a visit with an MPN expert.

If I hadn’t done my own research on ET, I would still be on Hydrea today. The side effects were very trying. Pegasys wasn’t even on their radar. Even if the VA approves prescriptions for Pegasys, Anagrelide, Jakafi or something else, the patients could be suffering from dosage/frequency problems, like I was. An MPN expert can help sort this out, and so much more.

I encourage MPN patients and their oncologists to do their own research. Veterans have the right to know about alternate treatments. Veterans also need to see knowledgeable experts and have access to blood tests that are relevant to their condition.