loading…
I’m Patricia Wagner. I’m 58 years old and live in a retirement community with my husband and two cats. I’m now followed by Dr. Ruben Mesa, a hematologist at the Mayo Clinic in Scottsdale.
I’m writing this blog series to help others by giving you a glimpse into how I have been impacted by myelofibrosis yet still consider myself to be blessed with a very happy and fulfilled life. If you are a fellow patient, perhaps you have learned much of what I have along the way. If you are recently diagnosed, some of the things I’ll relate may be new to you. My hope is to share a few helpful new ideas with you regardless.
For now, let me give you a brief overview of my journey:
The symptoms of Polycythemia Vera (PV) appeared gradually between age 38 and 40. At about age 51, my diagnosis changed to something which often follows Polycythemia, called Myelofibrosis (MF). You could think of PV as the “prolific phase” and MF as the “spent phase” of the same disease process, although sometimes one’s initial diagnosis might be Primary MF with no PV to precede it. There is nothing totally predictable about this disease – everyone’s experience of it is a bit different. Regardless, both PV and MF are in the same family of Myeloproliferative Neoplasms (MPN).
During the time of my initial diagnosis, PV was considered to be an orphan disease. There were no treatments specifically designed to address it, and there was little focus on research of the disease. Partly due to the efforts of a very vocal and organized group of patients who inspired doctors and researchers to help us, some promising insights have now been gained. The JAK2 discovery has already led to new disease-specific drugs and doctors have gained additional understanding of how the disease operates.
So what does this look like from a patient’s perspective? Well, in the entries that will follow I’ll be sharing how it began. Then I’ll give an overview of the diagnosis phase and the treatments I had as the symptoms changed over time. After that, I’ll talk about what‘ve learned about being my own advocate. Lastly, I’ll share the complementary practices which have enhanced my Total Health: Body, Mind, and Spirit.
at which point, phase or stage…did you feel like you had been sucker punched in the stomach (with “the news”)..then dear god how can i be functioning at the level that i am, then of course …the .. i have a good life phase…all that within 4 hours… i am exhausted
Noreen, you are right that within the space constraints of a blog I did not elaborate on that “punch in the gut” feeling which I too had. I was in denial alternating with shock and alarm for a couple years at least. Not “looking sick” contributed to this confusion I felt. You might want to look into the support groups for our disease. Here’s a link that will lead to the MPN Research Foundation’s listing of our support groups: http://www.mpnresearchfoundation.org/mpd_support_groups.asp
I am 68 years old and have PV, have had it for 3 years. I will start Pegasus as soon as I can get ins coverage. Bcbs denied coverage. We are appealing. My platelets: 1,500,000! I am a patient at Mayo. This disease progressed over the last few months. Phlebotomies worked for 2 1/2 years. I just contacted MPN foundation to get information–seems like a very helpful group.
Jeri, My wife was diagnosed in 1993. Her platelet count was 1,450,000. We went to Mayo in Minn. and she was treated with anagrelide 0.5 mg two tabs in the am. When she started she was in a trial program, then it became FDA approved. Her platelete count runs around 400,000. She is suffering from severe fatigue but otherwise doing well. Stay strong.
Hi Patricia,
Feel like I got incredible friend. I was in PV at the same age as you (39)and controlled very well with hydrea. And when as my age turned 51 (last year) I was diagnosed get MF. I was admitted to the hospital 3 times and get tranfusion plenty of time. Now, I got transfusion in every 3 – 5 weeks depend on my hb. If below 8. I take nothing except Exjade to keep control my ferritin. What about you. Can you please share your experience to keep look fresh and younger than your age? Thanks.
hello – I too have PV, was diagnosed year and half ago,,, I am 50 years old…. When I was 26 I was diagnosed with thrombocythemia and was given a medication called “Myleran”, was followed closely by Dr. Peter Wasserman at the Polyclinic in Seattle WA.
My treatment so far since the PV, is just phlebs and baby aspirin. Tomorrow I am scheduled for a phleb….
It is nice to be able to relate to others who share this rare blood disorder.
Theresa
Your history is interesting. Not the first time I’ve heard of an initial diagnosis of thrombocythemia later morphing into polycythemia. And it is strangely comforting to know that you are not entirely alone with this MPN, isn’t it? The link I mentioned in replying to Noreen may also be helpful to you.
hello.. as a cdn, we’er lack the speed of the us. i live near niagara falls and have to travel to ‘to’ and see the best physican. i’ve just started inc424 and it started to work within first month,, but i require transfusions as now i lose hemo cells. i would like to converse with others about the internal feelings .
Hello, Bruce. Thank you for sharing your experience with us. You may want to consider taking a look at our following site, Connect, http://connect.mayoclinic.org/
This site will give you the opportunity to initiate a discussion and perhaps connect with others.
Hi Bruce .. I am cdn too and I know what you mean about the speed of treatment. I have a hematologist right now and I am not pleased with him. But because of the lack of specialists, you really don’t have a choice. When were you diagnosed? I was diagnosed 9 years ago and I’m finding it hard to find people to talk to about it. Tke care and good luck!
I was diagnosed with essential thrombocythemia about 9 years ago and was given hydroxurea to lower mt platelet count. Three years ago at the age of 61, I was diagnosed with myelofibrosis. I’ve been taking hydrox in an attempt to reduce the size of my spleen. I’m finding it so difficult to cope because I have a doctor who won’t answer my questions. I would really like to know what lies ahead but he seems to think the less I know the better (power of the mind). Makes me very angry. I do not have any kind of support system. My husband is very helpful but doesn’t like to “talk about it”. I wish we had a mayo clinic here in Canada. Can anyone give me a reasonable prognosis. By the way we have very few hematologists so changing doctors isn’t an option. Anyone have a good site I can go to? Thanks for reading.
Thank you for contacting us, Sharon. You made find the following YouTube links helpful on essential thrombocythemia. http://youtu.be/mx66GhG6kvA, http://youtu.be/h0vGV6BgBHg,http://youtu.be/-zA8UsRUAdM.
Thank you very much Susan .. very much appreciated
Sharon
i have mylofibroises i had 8 bouts of chimo i’m taking hydrorexea and allopurinol sometimes i do not take my medication my spleen is so enlarged …i feel sorry for myself i live alone my husband passed away my children 3 of them do not believe that i’m so tired i had tia like a stroke on christmas 2012 i live in fear of a stroke constantly.
I am 53 yrs old and was diagosed with MF Dec 09. I take Danazol 3 times a day and prednisone (2ea 10 mg) in the am) and folic acid. My hemo is now 12 but it was 4.9 when I had to have 4 tranfusions. It took them 3 months and several transfusions until they figured out what I had. I would love to have more information and to hear from everyone. I’m not sure what to expect next. Brenda
Do check on the link I provided to Noreen. I realize how incredibly draining your low counts were, and how alarming things have surely been for you. I used Procrit for years and have been there! I’ll be talking in future entries about the need to educate yourself and to be your own best advocate. My best wishes to you – you are not alone.
I cannot help but wonder how we acquired such a rare disease, so rare, new drugs coming along the pike may be designated “orphan status”. I ws born in Great Britain during the war.
DX: ET 1999 when my mother died.
MF. 2008 after radiation treatment for breast cancer.
Can these be coincidences?
Vivian, you’ve raised a subject I and many others within the MPN patient community have wondered about since the online patient communities began. There’s no formal research for MPN patients regarding this, but a remarkable number of us can point to a life crisis preceeding disease onset. Prior to my own MPN onset, I had serious and unresolvable problems which I compartmentalized so as not to think about them. They did not go away. My personal belief is that they sought their outlet in physical illness. I’ll talk later about the mind-body-spirit connection.
Is primary myloefibrosis cancer
I was diagnosed 5 years ago. Phlebotomy was all that was offered. My oncologist got me into clinical trials at MD Anderson in Houston, TX. Using pegalated interferon 2a. Worked miracles. My CBCs dropped to the right “normals”. Been doing the injections for the interferon for 3 1/2 years now.
im not the speller was a constrution worker all my lfe so please bear with me,i a 49 year male with butifull grand children and i have mb, i dont have any eneryey and been dianoggesed for about two years but been ill just about 11 years,i just applied for ss but i dont feel its to go threw will it? sorry i know i type terrible
Craig, Thank you for your comment, but we are not able to tell you about social security.
Hi, my husband was diagnosed in September 2011 with Primary Myelofibrosis. I have been desperate to find someone else with this disease and communicate. We filled out an application (with the Luekemia and Lymphomia Society)to talk to someone with this condition months ago and have had no response. Can’t find many blogs from people with this that are up to date. I read one that is from people in Australia with this illness and it is pretty interesting. I am trying to process all the info we have been give and have seen Dr Jame Foran at the Mayo Clinic here in Jacksonville, FL. Waiting to see if my husband’s brother is a match. Any communication is appreciated. He does’t seem to really understand this illness or is in denial. I read everything I can find as I want to know, rather than not know how other patients are dealing with this, espically their caretakers as I am. Thanks,
Dana Palomo
Dana, here is a link to our Connect site: http://connect.mayoclinic.org/
This site will give you the opportunity to initiate a discussion and perhaps connect with others.
Evening folks. I was diagnosed with pmf in July 2012 following a routine blood test. platelet count was as high as 1565 in June. Experienced night sweats, tiredness, enlarged spleen and pins and needles in my feet which has been treated with hydroxyurea. CBC is back into near normal ranges at this time. Was considered for a stem cell transplant but told that I am not sick enough at this time for the procedure. Currently my energy levels are not bad, but I seem to hit a wall from time to time and am suddenly exhausted. How has your experience been thus far. This has been a shock to both myself and my wife as I have been healthy and active all my life and never thought that something like this would get me. God Bless and hope that this finds you as well as can be expected.
hi i have mylofibroises ask me any questions i live in toronto ontario i see hematologist at st michael hospital let me know if you need more info
Since I have been diagnosed with polycythemia Vera – PV – I can really understand the frustration of finding a Dr that is informed as they should be on the poly problems. The solution is to push the Dr and to do research on your own. Find the clinical trials, research what is working and what is not. All too often the Dr will go along with whatever has been done in the past. Generally with not favorable long term results.
Being in the clinicals at MD Anderson in Houston has produced picture perfect results. However, on 1/6/12, I was told that the drug company will stop providing the pegasys 2a for the clinical trial effective 12/31/13. Insurance companies are very iffy at best in covering the cost. Now the drug company has “run out” of the drug and the hospital has none available for the clinical trials. hopefully it will be available soon.
Bottom line – do not accept the generalities that a Dr may throw at you for treatment. Research on line. Go to the National Institute of Health website and find the trials/results and any other information.
Take charge. At least be informed and don’t quietly go into the sunset.
Descobri recentemente a Trombocitose acompanhada de Mielofibrose, fiz vários exames que confirmaram. Tenho que passar por um processo cirurgico e ainda não sei como vai ser o meu tratamento no furuto, a princípio somente acompanhamento.
Estou esperançosa mas tb um pouco assustada…
I am a 78 year-old female diagnosed a few months ago with Polycythemia — seeing a hematologist in OR who prescribed Phlebotomy (have had 3) and Hydroxyurea tablets twice a day. Anyone else using this prescription medicine?
Betty, I have tried Hydroxyurea and I didn’t tolerate it well (lots of GI issues). I also tried the Pegasys the same thing happen with depression I was crying several times per day for no apparent reason. I now have MF and they have started me on Jakafi this is supposed to decrease my blood counts and decrease the size of my slpeen. I hope you fair better. Good luck.
I would not take the Hydroxy and i was doing the phlebotomy 3X a week for the first 5 weeks and than 1X a week for 4 months and then about 1X a month thereafter. The pegasys 2A was the only thing that works for me. My #s all went to the normal range. Yes pegasys really really messes with your head. Major problem and that is why 20% of the people in the clinical trials I’m in – drop out.
But what is the option? If it were not for the pegasys – I would not be here today. That’s because my #s were really out of control. I take the pegasys every other week by injection. Go to the oncologist every month and have a bone marrow biopsy every year.
Oh well.
Hi Betty .. I was on hydroxurea off and on for 2 years. I had no serious side effects. It reduced my counts but did little to reduce mt spleen.
hi sharon my spleen is big i take hydrorexea for nothing 1500 mlg i do not know what else to do
Im intereting to join this discussion. I had PV for the last 10 years and now it turns to become MF. I got transfusion in every 4 – 5 weeks if my hb drop below 8. I got nothing to take axcept exjade to keep control my iron. Is anybody there can share their experience to get a better life. Thanks.
Hello, I was diagnosed with Myelofibrosia in July 2011. I have had anemia for many years. In 2011 they did the Bone Marrow teset which shows I have the disease. I have not been given any treatment, thus far becasue they said there really is not any good treatment for this disease. Is this true?? In the past 6 months my spleen is really growing, and I am very short of breath. Get full very quickly when I eat, but have not loss weight. I have Petechiae on my arms and Tired– oh my yes. Very tired, I work and sleep. I was happy to find this site, becasue I would love to talk with someone who has this disease. What to do? Who to talk with? What to expect from this point. The Dr. has told me now that my spleen is gorwoing so quickly they are going to start me on a Medicine in Jan. Please anyone who can talk with me I would love to hear from you. Oh and I get all the time “you are tired all the time but you look good”. .They have no idea. Thanks in advance for talking with me. Louise
Thanks for your comments and we suggest that if you would like to consult with one of our hematologists, then please contact the Appointment Office http://www.mayoclinic.org/patientinfo/appointments.html. Also, you may want to join Mayo’s free online health community at http://connect.mayoclinic.org/ to connect with others who have been diagnosed with myelofibrosis.
Hi Louise
I have had polycythemia vera for 14 years and developed myelofibrosis 6/12 I am now on a trial drug related to the Jack2 Gene. This drug has helped eleviate some of the symptoms , my spleen and liver are still very large but stopped getting larger. overtiredness is a problem but can be managed by resting when it hits .I live in Australia c\Cheers Robert
My mother was diagnosed with PV in 1999 … she has been on and off of Hydroxurea since the diagnosis was made. She is a farmer’s wife and is one tough lady. With the exception of major digestive issues and bleeding ulcers a few years ago, she has lived a great life. She seemed to hit a roadblock in early March, and has gone downhill since. Her RBC dropped from around 15 in mid-March to 8 last week … they gave her two units of blood last week, and it’s back to 10.9. She underwent another bone marrow biopsy last week, and we were told yesterday that she has moved into the “Spent” phase … with the development of myelofibrosis. I do not believe that PV is something that her doctor has seen much, and I think with her advanced age (78), he doesn’t really have either a lot of knowledge, or much interest in her case. She is exhausted, has no energy level, no appetite, is dropping weight again, and is winded just waking to the shed (which is not far from the house at all). I’m at a loss as to what to do to help her. Do I ask him for a prognosis? She is of the opinion that less knowledge is better, but I feel that we need to know all we can in order to help her. My mother absolutely NEVER complains about anything. She wants no sympathy at all! She has a very deep faith which comforts her. Please help with any suggestions at all. Thank you all so much.
We are sorry to hear about your mother’s condition, Nancy, and it certainly seems that she is a strong and resilient woman. Unfortunately, we are unable to provide any specific treatment recommendations through our blog site. But we do have a series of excellent videos from our myelofibrosis specialist, Dr. Ruben Mesa, discussing treatments available and suggestions for managing this condition. Here are a few videos that may be helpful to you and your mom. http://youtu.be/Y9pKHy0Pn1E http://youtu.be/GNlRtUZKdRE http://youtu.be/ovF4_1Q4bcE
In 1986 I was diagnosed with MF. I had dry bone marrow and s slightly enlarged spleen. I was monitored every six months and nothing changed until last August, when all of a sudden my spleen grew to the size of my abdomen and blood counts went crazy. I have gone to John Hopkins in Baltimore in November and saw Dr Sivak, and he gave me three treatment options. I started to take the new drug, Jakafi. At first it seemed to be working, but now my local hemotologist/oncologist feels it is not working and took me off of it. I am now experiencing my spleen moving to the center of my abdomen and causing severe pain when I try to bend over, especially to the left. I am now waiting to get another aointment with Dr. Spivak for a re-exam and another course of action. Between joint and abdominal pain, the fatique and the frustration of lack of local specialists this has been a long troubling road. Thank you to you Patricia and everyone who has put their information and personal stories here.