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Hesitant on starting Hydrea for ET Jak 2
Blood Cancers & Disorders | Last Active: 10 hours ago | Replies (12)Comment receiving replies
i don't find much help, i don't like being dismissed because i have other medical problems and that doesn't leave me with much but HU which isn't working for me and side effect of leather like skin, a pimple like breaks open and clean and blood they don't heal very well... I have 1 million count still after 2 months on Hu not really anything else for me, maybe jakifi i have no medication coverage, doctor said if you miss a dose you get very ill, i can't handle being ill, never have been this blood cancer stuff is all overwhelming for me and i'm think of just not doing anything.. i'm tired of bad doctor you can't even call and get back to. I have medical ptsd from have a sever reation of MH CRISIS in a minor surgery where i should of gone home the same day, but had to be put in a life saving coma, because of their error, my body temp went up my muscles went ridge, heart went crazy.. when i finally woke up they told me i was a miracle i don't feel that way. i want nothing to do with the medical system and her i am trying to find some compassion and understanding and they just go by the ridge rules of medication to reduce my platelet and let me with gout like sysptoms where i gave up my 5 month puppy as i thought i was cripped for life, NWMS in Puyallup, Wa is like an assembly line... Talked with Fred hutch they really didn't have a lot to offer either but the doctor was human, i had never been sick or ill in 40 years no primary care doctor, and am trapped in larger medical system if i change from nwms, and it's close to home and suppose to be good.. i'm very depressed. my puppy was my saving grace and because they didn't answer question about the gout like stuff, i thought it was best for ms daisy to go else were, i tried to get her back and the rescue will not... they were very mean, she was an expensive dog but that isn't the point, i love her and still miss her a month later. she calmed me, i take care of a 96 yr old and care for my home and 2.5 acres that need to me mowed, but i have no medication coverage and i'm or was a young 76 still doing my own oil changes on my truck and corvette. i hate this blood stuff, more blood taken in a month than my entire life. i just really don't believe in doctors, but it seems i have no choice, or do i..
Replies to "i don't find much help, i don't like being dismissed because i have other medical problems..."
Hi @ladyplumber7 ,
I feel for you. The doctors who are supposed to be experts and care for us as their patients really do not in many cases. I have been similarly frustrated with my experience after being told I have blood cancer 1/2025 from a routine blood test that showed high platelets 12/2024. I also have had four basal cell carcinomas removed in the past and just did not care to even take Hydrea and never have. I asked and read about other FDA approved med options but they come with side effects too. Some are just a lot more expensive and really are not a cure according to a medical doc I actually trust, a bone marrow transplant surgeon, who told me that. So I just take low dose aspirin most days. What really was and is my chief complaint is my very now deformed right ring finger and I am getting a further run around on that with no answers since this began in 2023. No doc or specialist seems to know what it is! I have even been sent to an Infectious Disease doc who seemed much more concerned and interested in my case, helping me, and thought a biopsy would be needed to run special tests for uncommon organisms. She sent me to a fifth hand surgeon who blew me off yesterday and said it was psoriatic arthritis. I saw a rheumatologist right after my platelets were found to be high who said she did not know what I had and sent me for ultrasound guided needle biopsy of my finger joint that was not approved by the insurance. The rheumatologist never diagnosed me with psoriatic arthritis! I actually would not want that fifth doc as my hand surgeon as I am not sure of his skill level for my situation. He said I should go back to the rheumatologist for treatment of psoriatic arthritis which I do not even have! I am just being “ping ponged “ back and forth between specialists at this point. I liked the fourth hand surgeon who sent me to Infectious Disease but he is just a local older hand surgeon not dealing with the infectious disease component of my case. So, although I am complaining, I count my blessing as I have no pain and full range of motion as well as have not been cut up by one of them just doing something and causing me a worse outcome like not being able to write at all. So my visits to supposed specialists were pretty useless including a MPN specialist as she did not even read my chart and thought I had JAK2 mutation which I do not. Perhaps she is an expert in JAK2, but I have CALR mutation and she seemed to not be up on latest information on what I have. She also thought my finger had gout and it does not! In the meantime after a year and a half of being told I have blood cancer I still feel exactly the same as I always have with no symptoms and like you consider myself a very healthy person at age 66 and will keep it that way myself, God willing.
I am so sorry to hear that you did not feel well enough to keep your special puppy. I do hope you can get Daisy back at some point. I know our house cat here is very helpful and calmly for me. We got her from a rescue.
Anyway, thank you for listening and know you are not alone in your frustration with the medical system in current times.
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@ladyplumber7
I'm so sorry for what you're going through.
When we're sick and the doctors don't seem to have any answers, it's really discouraging.
Thank you for all you do. May you find some strength and joy today.