Hope everyone had a great Christmas Holiday! Mine was a little off but I still feel blessed. 93 yr old mom got sick, husband got sick and now today I woke up with massive headache, sore throat an upset stomach, oh my right.
Have something to share with everyone, went to see a very known MPN expert and speaks at many conferences throughout at John Hopkins Hospital waiting two months to get an appointment and thrilled he agreed to see me! Even though visit went well and I really liked him walked away soooo confused at what to do now. He is an advocate of watch and wait if no other problems and age does not factor into it, unless there are other problems. He also is totally against HU, especially if you have had any other previous cancers. He states that HU causes skin cancer and even though its a small number of people that research showed that long term use of it caused leukemia we are a small group to begin with. He looked at all my other blood work, say my red blood cells are enlarged a little and that is because of the HU, I did notice that only since I started taking HU, he examined me, asked me lots of questions looked at all my past xrays tests and BMB included and said so what, you have high platelets, barring no other problems he does not treat until it gets over 150,000 million. He also states there is 0 evidence suggesting high platelets cause strokes it more worrying of a bleed unless you have other symptoms and problems. He states people with low platelets and normal platelets have strokes. Which I know that is true. When he treats he uses angrylide or pegasy only. They did lots of blood work and he showed me my blood what it looked like. He also looked at MY bone marrow biopsy and in particular the alle burden which was 10%, he said there is no possible way they can tell if your positive or negative with that small burden. He also told me his brother in law has it and is not on medicine.
So in short his recommendation is Watch and Wait and he sending to my Doctor his recommendations. Now my GP had agreed with this all along, however my Hemo/oncologist Dr does not, my local one, he is not an MPN expert but I do like him, but I don't get answers like I did with the expert. I'm on HU one a day for two months, getting tons of side effects, fatigue, indigestion, headaches, skin sensation, burning feet, dry skin, some mouth sores come and go, thinning of hair to name a few. Platelets have only gone down to 630 from 743. When I ask my Local Hemo Dr questions he hands me a paper from the Mayo clinic, says here are my risk factors, Jak 2 positive, over 60 and ruled out everything else. That's it, when asked about the leukemia things he says don't worry that's 20 years down the road, also seems pre-occupied and says cannot understand why I am getting all the side effect from a small dose oh and I forgot to mention something else I have gained 10 lbs since being on this medicine and do not eat any different and I'm constipated all the time.
OK so I'm still taking HU because I think I'm more scared of a stroke! But I am a cancer survivor and the thought of HU causing me to get another tumor is not good either or possibly skin cancer or leukemia.
Just would like people's thoughts on this that's all, not suggesting anything because there are so many different's of opinions from these MPN experts, You have Dr Silva who also does not like HU and then you have Dr Harrison and Dr Messa who advocate HU. It's enough to boggle your mind when the experts disagree, LOL.
Anyway hope everyone is doing well, saying prayers that 2016 will be find better meds and cures for all of us and feeling blessed for the forum!!!! Mickey