So after getting back from MD Anderson, I saw my hematologist at UC but I have recently switched to another hematologist in my area. I don’t really want to go into detail, but a couple of things happened with my doctor at UC that I just wasn’t happy about. I see a doctor now that is willing to work with Dr. V at MD Anderson and I feel confident with. That is so important. So my recent blood work at the end of July is WBC = 3.6, hemoglobin = 8.4, platelet = 481, hematocrit = 28.4%. I’m so used to my platelets being high and being on medicine that it’s still crazy to me that my platelets are 481,000 with no medication! But that’s this crazy disease. My bone marrow just isn’t working correctly and definitely like it was. Right now I’m taking aspirin twice a day, Danazol and vitamin B12 shots. I see my new local hematologist on September 24th. He wanted an ultrasound of my spleen to see if it is enlarged at all and to get a baseline. I have that done on September 19th. Hopefully it isn’t enlarged at all. I’m still not having any symptoms other than the anemia. The anemia is definitely getting worse. I’m tired a lot and sometimes my body just feels so heavy. But I’m not transfusion dependent yet, so I’m thankful. That pretty much gets everyone up to speed. Thank you so much for reading and I’ll keep everyone up-to-date as I have appointments or things change. Feel free to reach out if anyone has questions. Love to all!
As you would expect, MD Anderson was amazing. For the first time, I really felt like I was talking to doctors and people that knew about what I had. While at MD Anderson on the 28th, I had blood drawn, see a couple of nurses, a social worker, a doctor working with Dr. Verstovsek (sorry don’t remember this name) and Dr. Verstovsek. At this point, WBC were 3.9, hemoglobin 9.1, hematocrit 30.7%, platelets 513,000. MD Anderson did so many other tests but one that stands out is the LDH test. I hadn’t heard of this, but apparently this is a test that is high if you have myelofibrosis. They watch this and went it gets very high, this is one of the signs that it’s time for the transplant. My LDH was 550 and the normal range is 135-214. Dr. Verstovsek confirmed that I had myelofibrosis and would need a stem cell transplant. He explained that because of the high risk of stem cell transplant and the nature of myelofibrosis, they will be very careful in the timing of the transplant. At this visit, I still was not having any symptoms except mild anemia symptoms. Dr. V as most people refer to him, said there are things to look for that will let us know when it’s getting close to transplant time. They are transfusion dependent, enlarged spleen, high LDH, and symptoms such as low grade fever, night sweats, bone pain. I’m not transfusion dependent yet but am anemic. Dr. V did suggest a drug called Danazol that helps some of his MF patients with their anemia. So I started on Danazol. Dr. V said that the vitamins B12 shots are not going to help but won’t hurt so I can continue those. Dr. V really took his time and explained Mf and the MPNs to me. As I said earlier, It really felt like I was at a place where they actually knew about MPNs and that felt great. Dr. V said that he would work with my local hematologist. I asked Dr. V how important it was where I had the stem cell transplant done at. He said it was very important and that I need to have it done at MD Anderson. Apparently MF is a little harder to transplant because of the bone marrow scarring. As I said in an earlier post, I live close to Cincinnati. Houston is a pretty long way from Cincinnati and my family and friends. I know I need to go to the best place available but I also feel I need my family for a smooth recovery. This is definitely something I need to think and pray about.
We only had to be at MD Anderson one day so I’m so glad we drove. Tom and I started home the next day. Overall it was a good trip. I learned a lot and things were confirmed. This is still hard to accept but I felt like I had even more answers and were at the place I needed to be.
So I continued seeing my hematologist and felt like things were under control. I continued on the hydroxyurea and aspirin with no phlebotomies and I felt good. I live close to Cincinnati and did switch my hematology care to the University of Cincinnati in January of 2014. Life is funny… I worked in cancer research for about 10 years. I’m not clinical at all. I have a business degree and worked in the office but the brilliant researchers I worked with always said that if you have something serious, get to a teaching level hospital. I also worked across the street from UC so I decided to switch my care there. I wish at this point, I would have gone to an MPN specialist, but since I didn’t have any symptoms, I just didn’t do it! My first appointment at UC, my WBC was 3.5, hemoglobin 12.2, platelets 929,000, hematocrit 36.7%. I stayed on the Hydroxyurea for awhile but my platelets wouldn’t come down so I was switched to Anagrelide. I then stayed on Anagrelide for a while but it made my heart race. UC checked out my heart and it was fine and this drug was helping my platelets so I stayed on it, but not for too long. In the spring of 2014, my WBC plummeted to 1.4 and my neutrophils went dangerously low to 440. I had horrible mouth sores because of this. I was instructed to wear a mask when I went out in public to protect myself from getting sick. My platelets went into the normal range which had never happened before! They took me off of all medications at this time. After a couple of weeks my platelets were 615,000 and increasing.
I was put back on Hydroxyurea and this seemed to keep my platelets in the 500,000 to 600,000 range and white count and neutrophils were low normal. My doctor adjusted my dose constantly based on my counts and even tried the Anagrelide again.
On June 18, 2018, I started on Jakafi. My doctor felt that I wasn’t getting the results we needed anymore from the Hydroxyurea or Anagrelide. At this point my WBC were 2.6, platelets 916,000, hemoglobin 10.1 and hematocrit 29.7%. I started on a low dose of Jakafi and the dose was changed quite often. My white cells would start dropping and my doctor would change the dose or stop the Jakafi for awhile. The Jakafi caused me to become very anemic. At one point my hemoglobin was 7.2. They were considering a transfusion but just took me off of the Jakafi and my hemoglobin came up some. They tried Jakafi a few more times but my hemoglobin would always go too low.
Finally on April 22, 2019 I had a bone marrow biopsy. The doctor said he didn’t think he’d find anything but wanted to do a check since it had been so long since I had my last BMB – 30 years!!!
My family and I went back on May 6, 2019 to get the results of my bmb. Funny story! The doctor walked in and said, “just as I expected, we didn’t find anything new.” He then decided to look at his computer and pulled up my chart. Guess what! I have stage 2 Myelofibrosis!! How does that happen? I’m told nothing new and then told oops! You have MF and need a stem cell transplant. I’ve heard people describe an out of body experience and I can’t say that I’ve ever experience this until that moment. I remember sitting there watching the doctor’s mouth move but it sounded as if he was talking in slow motion and I was watching all of this from afar. Is he really talking about me???
Yes! He was talking about me! At this point my WBC were 4.3, platelets were 560,000, hemoglobin 9.1, and hematocrit 29.1%. I was taken off all medication expect for aspirin but they added vitamins B12 shots to see if that would help with the anemia. It didn’t but I continue to take the shots once a month. After that appointment I decided it was time to see an MPN specialist. I know, I know! I can hear you saying, “Finally!” I called MD Anderson and set up an appointment to see Dr. Srdan Verstovsek on May 28th. Tom and I made the drive to Houston for Memorial Day. Most people think I’m crazy, but I wanted to drive instead of fly. When you go to MD Anderson for the first appointment they tell you that you may be there 1-5 days. Tom and I love road trips and I just didn’t want to be confined by the airline. As soon as I could, I knew I would want to come home. As much as I wanted to think of this as a vacation, it just wasn’t. So we drove. We saw some beautiful scenery and had the best time we could.
So I was lucky enough to live a normal, healthy life for many years. I continued to see my hematologist for awhile and take only aspirin. Then he moved and I was monitored by my primary care physician. This probably wasn’t one of my better choices, but honestly I felt good. I think the only real symptom I had for years was more fatigue than other people my age. I really never had any other symptom of ET or PV other than the high platelet count.
Fast forward to May, 2011. I broke any ankle (Very funny story I’ll share some time ) and ended up two weeks later with a blood clot. I went 22 years without really any symptoms and now this at age 44. Looking back, this is when I should have sought out an MPN specialist but I didn’t. I started seeing a local hematologist. The hematologist started me on Lovenox for two weeks and nine months of Coumadin because of the clot. At this point I tried to stop taking the baby aspirin, but had horrible migraines so I continue to this day on a baby aspirin daily.
A week later I went back to my hematologist and my CBC showed a white count of 9800, hemoglobin of 18.1, hematocrit of 56.5 and platelet count was so high the machine couldn’t read it. They phlebotomized 500 ml of blood, started me on 500 mg of Hydrea and drew blood to test for the Jak2 mutation. I continued seeing the hemotologist weekly and eventually they increased the Hydrea to 1000 mg. So now we have a Polycythemia Vera diagnosis.
By the end of July, my white count was down to 5900, hemoglobin 12.3, hematocrit 40.3 and platelets 748,000. No more phlebotomies! Whew! I continued to be watched by my hematologist with decent blood counts and no phlebotomies. In December of 2012, I had to have foot surgery for severe arthritis. I had a bone spur that was hitting a nerve and it was very painful. This was waking me up at night with shooting pains. I was so concerned about a blood clot again since I would be immobilized for two weeks. I was told when I came off the Coumadin previously that if I had another blood clot, I would probably be on the Coumadin for the rest of my life. Ugh! Thankfully the surgery went well. I was put on Lovenox again for two weeks only immediately after surgery. No blood clots!! On to Myelofibrosis.
After Alex was born I continued seeing my hematologist. I stayed on aspirin only at this time. It was very important to me that Alex had a sibling so I talked to my hematologist about getting pregnant again. He felt since the first pregnancy went so well, it was fine to do it again. He also felt that the younger I was the better. This time wasn’t as scary. Everything turned out fine again and a perfect, beautiful baby girl was born on August 25, 1991. What a perfect, little family!
Well it all began in 1989. I was pregnant with my first child and we were so excited. The first grandchild on both sides of the family. I went to my first ob/gyn appointment and they drew blood just like they do for all their new patients. They thought everything looked fine and I went on my merry way. A couple of days later when I got home from work, I checked our answering machine – definitely 1989! I had a message from the doctor’s office asking if I could come back in and get blood work done again. They thought their machine messed something up as my platelet count came back over 1 million. I remember the nurse on my machine actually said, “we think it’s just a fluke with the machine.” Well it was no fluke. I went back and again my platelets were over 1 million. I was immediately sent to a hematologist who did a bone marrow biopsy. Not fun at anytime, let alone pregnant. They all thought I had some type of leukemia. No leukemia, thank goodness! The bone marrow biopsy revealed I had Essential Thrombocythemia.
Let the craziness begin!!! At that time they couldn’t find but only a couple of cases of anyone pregnant with essential thrombocythemia. In those couple of cases, the outcome of the baby was not good. So the doctors immediately started preparing us for the worst. They figured I would have a miscarriage – I didn’t. Then they thought the baby would die because my placenta would be full of blood clots and wouldn’t be able to nourish the baby – nope, didn’t happen. Then they thought the baby would be premature – three days early! I actually felt great throughout my pregnancy, but felt like I practically lived at the doctor’s office. I was even given the direct line to the nurses! They were doing ultrasounds and stress tests constantly along with monitoring my blood. I was taking a baby aspirin at this point only. It was a very stressful situation for all of us as you can imagine.
Our beautiful, perfect baby boy, Alex, was born on November 5, 1989!
Taking out the scare factor, I had a very normal pregnancy and delivery. Everything was absolutely fine. Thank you, God! I continued to follow with my hematologist who actually put me on iron as my iron was slightly low. Not by much, but he seemed to think that if he could get my iron up, my platelets may go down. Of course, that never happened.
I’ve recently been diagnosed with post polycythemia vera myelofibrosis and will need a stem cell transplant. Even as I write it, I still don’t think it has really sunk in. Nevertheless, my stem cell transplant journey has begun.
I’ve been searching the web looking for someone that has the same diagnosis and has recently gone through a stem cell transplant but can’t seem to find what I’m looking for. I wanted to see their journey so I would know what to expect. Sure, there are some 20 nothings on You Tube who have vlogs and are going through stem cell transplant after a leukemia diagnosis. I’ve watched those and prayed they are now fine. But I would love to hear from someone in their 50s, like me, with a similar diagnosis. I guess it’s our generation, very few of us blog or vlog. I did find a couple short articles from people with this horrible diagnosis, but not a step-by-step journey showing what they’ve went through. So I decided to create my own. Well, I’m a mediocre writer at best, but here goes!
So why am I writing this blog?
- For others diagnosed with an MPN. So they can see what I am going through and know what to expect. That’s why you’ll see my blood counts and a decent amount of detail.
- To create a place of support for other people with MPNs.
- To keep family and friends updated along my journey.
- To document my fight.