Essential Thrombocythemia: Looking for information and support

hello. I was diagnosed with ET over 25 years ago, while young and in the Service (Navy), at the age of 27-28. I'd like to share my experience living with this. Tho I am not JAK2, I have other mutations. This happened in 1998, when I was carrying my first child and they found high platelets, randomly, on all my monthly blood testing. The Navy hematologists found it and said something about 7 months in. I went on , not only to raise my beautfiul daughter, but again, having a son while on treatment!!! (just 11 years ago). Then, my E.T., just last year, after 25 or so years, mutated in Myelofibrosis. Looking back, I wished I would have tried to live an even fuller life with it, while young because the Navy wanted me to do two sea tours and i opted to get out. If it werent for the mild to mid neuropathies I suffered from throughout that whole time, i would have never known what I had. But I lived a great life anyways, and being that I couldnt run anymore (was a big youth runner), I spent alot of time riding horses and even goat herding (the last 15 years).
After having my daughter, they put me on Anagrelide. And, by the way, no doctor ever, in this entire time, told me this was cancer, rather just a disorder of the blood. Same with PMF, its like a malfunction of the bone marrow, but not like Leukemia. My platelets actually got up to one million, two hundred thousand. And the anagralide brought the numbers down pretty nicely, except it caused migraines and sever anemia. One VA hematologist gave me Procrit shots, and i swear, it was like i had my life back again! At the worse time, my daughter was only 2 to 3 years old and my husband worked out of town alot. And the Anemia was sooooo bad, i couldnt get out of bed to take care of her!!!! I turned blue. And a friend came along and told me that my coloring was off....so I changed doctors again, until someone helped me. In fact, that was quite a constant theme of the 25 years with ET.

1. Thank you for your service. I, too, was in the Navy a long time ago!

2. Appreciate reading all your journey these past 25 years. It's good for us to have your history when we are so new to all this - I only learned six months ago and still learning to deal with it all.

3. Yes, my heme doc said the same thing: not all ET = cancer. I'm Jak2 and it's a blood disorder. Period. Sure, it can mutate in time - or not. Better to look on the positive side!

Living? Absolutely! Any of us could get smashed by a big truck on the highway on any given day. ET is just a bump in the road. Blessings for your healing and dealing!

"Just a bump in the road"?

Hmm. How about the fatal coronary or pulmonary emboli, the amputations, the DVTs, the acquired von Willibrand's, the point where the meds stop working or the dosages get so high they makes you sick? Or how about the enlarged spleen, eating and bowel problems, and fibrosis pain? Or even just the fatigue and chronic migraines that some patients get?

You can have a good quality of life for many years if you are willing to make adjustments and take care of yourself.

But calling ET a "bump in the road" is dismissive of people's suffering and not very supportive.

Thank-you I second that, absolutely agree, everyone of us has their journey. ET is a blood cancer there are mutations in our blood and any mutation comes under the CANCER umbrella and is not something to shy away from. I am not afraid to say the word CANCER. My story is long and I won't bore you I'm a survivor having had a few major events, lucky and thankful to be alive. I am a fighter and will fight this and live with it.

Not all mutations are cancer, though some cancers are caused by detectable mutations. The reason the WHO reclassified ET as a chronic cancers was because of the proliferation of platelets in the bone marrow.

Some doctors disagree with the reclassification. It's above my pay grade to argue either way.

I get that we all want to be as positive as possible and not waste today in what-iffing about tomorrow. Most of us can live a normal lifespan. Many of us will not die from ET-related complications.

Part of taking care of ourselves requires accepting that we have a chronic, incurable disease that needs lifelong monitoring and maintenance.

Honestly, you should feel free to tell us about your ET if you want. My guess is that most of us don't talk about it to family or friends. Most of us don't look sick, and we push ourselves to act normal. This is the one place we shouldn't have to be brave and noble and pretend it's just a scratch.

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!

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.

Hi Ginger,

I am 79 diagnosed with ET JAK2. My hematologist gave me an information sheet from Chemocare.com on Hydroxyurea. Under care tips it said “to help/prevent mouth sores, use a soft toothbrush and rinse three times a day with 1/2 to 1 tsp of baking soda and/or 1/2 to 1 tsp of salt mixed with 8 ounces of water.” I only do this if I feel my mouth is getting sore. You can print this information yourself.

I do not even touch the capsule. I tilt it out to an another small lid. I swirl water around my mouth and lips before taking HU with a full glass of water.

My hematologist has tried different dosages for me because of headaches. I am presently taking 500 mg on Monday/Wednesday/Friday. I just had a lab and it went down from 528 to 509. I do take a blood thinner for AFib.

Best wishes, Eileen

Thank you for sharing your history. I will keep you experience with ET and HU in mind should my platelets go above the 600s in the future, especially if I experience brain fog and lethargy. Right now, two weeks off HU, I'm feeling bright and strong--I too spent yesterday trimming and hauling winter-killed branches to the street.

Actually, I was only diagnosed with ET this year, so my post is not bragging about powering through my ET. I was using the backpacking as an example of the level of activity I wish to maintain with a clear head. Being unable to do this was the reason I stopped the HU. I was trying to say this was the right decision for me in consultation with my hematologist. Having learned in veterinary school to search for and assess medical information in the cyber age, I take anything shared from Dr. Google with enough skepticism to do my own research.

Thanks for clarifying. I hope you continue to feel well. I didn't expect to feel better on HU, but some people do If doctors start out on lower doses and work up gradually.

If you have good insurance, Pegasys works for a lot of people, though older people seem to have more adverse side effects. They may have a better dosing strategy. Some see a reduction in the number of abnormal platelets on Peg and achieve remission. But the cost was something like $6k a month last I checked, and it' s off-label for ET. So it's beyond affordability for many people in the States.