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Essential Thrombocythemia: Looking for information and support
Blood Cancers & Disorders | Last Active: Jan 15 7:36am | Replies (600)Comment receiving replies
I am a breast cancer survivor and a fighter who is not afraid to say the word cancer. My oncologist for the breast cancer was also the hematologist who told me, when I called the JAK-2 diagnosis my second bout with cancer, that this form of ET was a blood disorder--NOT cancer. (Her emphasis on NOT.) We all have different risk factors and varying ideas on quality of life. I respect your treatment decisions as the right choice for you and your situation.
I wish to maintain an active mind and lifestyle for as long as I am able. Brain fog while on hydroxyurea made me wonder about dementia, and lethargy and lack of energy kept me from hiking, a passion that has me on the trail year round even less than a week after double mastectomy. These side effects cleared soon after stopping hydroxyurea while continuing low dose aspirin.
My only risk factor is age (71). My platelets have so far stayed below 700,000. Except for mild osteoarthritis of knees and shoulders, I have no other health issues. Stopping treatment and continuing to monitor platelet levels is the right option for me at this time. I've explained my decision to family and friends, including a hiking partner who's gone on 1-3-week-long wilderness backpacking treks with me every summer for the past ten years. Carpe diem!
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Kudos to you for being active! ET does not work the same in everyone, of course. I was in the 5-600s for many years. Did what I wanted. Just took aspirin.
When the platelets started to rise toward 1,000, I got really tired, started forgetting things, cut my teaching load, and had to retire at 63.
The HU helped restore some energy and stabilize platelets in 400s with only one or two jumps into the low 500s in the past 5 years. Mentally, I am much more with it.
Diet and mild exercise/stress reduction also helped.
I'm 70. I helped my husband trim branches and haul them to the street from a fallen tree in our yard yesterday. I paced myself, and I will need to take a couple days to recuperate.
But, see how I fell into the trap of bragging about how I'm powering through my ET? How I let you set the standard with your three weeks of wilderness camping and I felt like I had to counter with something tough I did so people didn't think I was a malingering and self-indulgent wussy?
Sure, my problem entirely for falling into that trap, but the "we gotta be fighters and win our cancer battle" language encourages it. And it's tough for MPN patients because our cancers are chronic and none if us are going to "win" or ring the bell when treatment ends.
I also believe people have every right to treat their ET with raw honey, coconut oil, and dry vodka martinis if they want. But I don't believe that all the treatments people talk about on cancer sites are equally effective or should be viewed as equally good choices.
I dunno. ET support groups always seem to take this turn: Somebody says they have a doctor who says ET is not cancer and the rest of us start googling to see if we've been duped. Or that HU is going to give you skin cancer and rot your guts out, so we start googling side effects, even if we've felt better on the drug. Or that we can't venture a scientifically informed opinion about alternative treatments because it's not supportive.
Just hoping this expresses some common frustrations and concerns of other ET patients.