Essential Thrombocytosis General Questions

Posted by sdcgcarroll @sdcgcarroll, Mar 29 8:28am

Is there any one place or Website that lists the full known (or experienced) symptoms of ET?

How about a complete listing of possible medications (both pharmaceutical and natural)? And their side effects?

Also is there absolutely anything you can do to help the debilitating fatigue besides meds, hydrating, diet and exercise? I’ve been told HU can also cause fatigue and I personally do not need more of that.

I see so many different things on so many sites but nothing all in one space. Can we please put it here for myself and others?

I feel like there needs to be an updated and complete resource for current knowledge and experiences on this type of cancer. It would bring some peace I think.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

janemc | @janemc | Mar 31 7:52pm

In reply to @kapow "@janemc I take 1000 mg 5 days a week and 500mg on sat &sun. So I..." + (show)

@kapow

You had way too close a call! What an ordeal.

It's helpful to hear that you too take a substantial dose of HU.

ET's not the boss of us!

vickieannb57 | @vickieannb57 | Apr 1 10:24am

I am 72 had AFIB for 7 hours admitted to the hospital. So I take Eliquis 2 daily instead of baby aspirin. Never had AFIB before and this happened exactly 1 month after starting HU and have not had it any more. I am now on HU 3 x a week not as tired as before. will go next week for blood check to see how plates are.

sdcgcarroll | @sdcgcarroll | Apr 2 8:15am

In reply to @nohrt4me "@sdcgcarroll Sadly, you will not find a comprehensive list of symptoms and side effects because they..." + (show)

@nohrt4me

@sdcgcarroll Sadly, you will not find a comprehensive list of symptoms and side effects because they vary widely from person to person. The most serious are clots or, in cases with platelets over 1,000, bleeding. Sometimes enlarged spleen. Meds are given to ward these off.

I'd say about half the people here have no symptoms or mild fatigue. The rest have intermittent headaches, bone pain, more severe fatigue, erythromelalgia, dizziness, or tingles in extremities. Among others.

ET is very poorly understood and understudied by research. Imo, brain fog and depression and kidney disease associated with blood cancers needs to be studied more in ET patients.

Symptoms sometimes come on with starting hydroxyurea. The meds get blamed, but it may be that the HU is being given because platelets are going up and it's ultimately the higher platelets that cause the symptoms. But no one knows.

HU alleviates symptoms for some. In others it causes diarrhea or constipation. It can also cause hair thinning and black stripes in nails. Too much causes bone pain. You'll hear lots of other complaints about it, too, and the FDA has a list of side effects a mile long.

I suspect there are psychological factors involved in HU resistance; nobody likes the idea of taking a chemo pill for life or of having an incurable blood disease. But I'm not a shrink.

Meds for ET:
--Aspirin to thin blood
--HU or anagrelide to reduce platelets
--Besremi or Pegasys injections if you can afford them and are under 40 or 50 reduce platelets and MAY lead to remission
--Jakafi is expensive and is used infrequently

ET gets far less attention than other ailments that hematology oncologists see. Most of us are middle-aged or elderly, ambulatory, we don't look or act sick, and our disease is advancing so slowly that probably something else will kill us. When a busy doc has to triage his time between us and the teenager down the hall with acute leukemia, guess who's going to get the most attention?

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@nohrt4me thank you for all the great information!!!

sdcgcarroll | @sdcgcarroll | Apr 2 8:21am

So question. Just for reference, I’m ET with jak2. My platelets are currently in the mid 500s, Taking a baby aspirin a day. No HU (it honestly scares me)
My fatigue however is seriously becoming life altering. It’s a full body weakness type fatigue. Is there ANYTHING I can do for myself to help alleviate it? I get monthly vitamin IV infusions as I’m a 20 years out bariatric patient so I don’t absorb supplements well. Any help or suggestions you have would be very helpful. I’m generally a very active person and just going to turn 60. This fatigue is really weighing on me. 😞

nohrt4me (Jean) | @nohrt4me | Apr 2 9:15am

In reply to @sdcgcarroll "So question. Just for reference, I’m ET with jak2. My platelets are currently in the mid..." + (show)

@sdcgcarroll Patient Power offers tips, but a lot of their articles like this one just rehash common sense stuff like moderate exercise, prioritizing, decent sleep, stress reduction, and diet:
https://www.patientpower.info/myeloproliferative-neoplasms/living-with-myeloloproliferative-neoplasms/im-exhausted-10-tips-for-coping-with-mpn-fatigue
HU helped my fatigue, but if you've taken that off the table, you might talk to your GP. A few younger ET patients I talked to some years back found Adderall helpful for fatigue.

sdcgcarroll | @sdcgcarroll | Apr 2 8:50pm

In reply to @nohrt4me "@sdcgcarroll Patient Power offers tips, but a lot of their articles like this one just rehash..." + (show)

@nohrt4me thank you for your response. I honestly haven’t taken HU off the table (even tho it does scare me) but I’m told my platelets aren’t to the point that they want to put me on it yet. He said he’d like to hold off as long as possible. Doctors here don’t know much about ET so I feel like they are learning with me.

nohrt4me (Jean) | @nohrt4me | Apr 3 8:58am

In reply to @sdcgcarroll "@nohrt4me thank you for your response. I honestly haven’t taken HU off the table (even tho..." + (show)

@sdcgcarroll My feeling is that you are better off with a doc who is conservative about when to start HU as long as he's factored in all clot risks (age, mutation type, prior clot history, etc). Hoping you can find ways to fight your fatigue. It is life-altering, but because it can't be seen, palpated, heard with a stethoscope, or measured in a lab, doctors tend to ignore it.

1995victoria | @1995victoria | Apr 3 9:12am

I found the BloodCancerUnited (formerly Leukemia/Lymphoma Society) a good source of information on ET http://www.LLS,org for facts and figures on MPNs. I think this Mayo Connect provides a space for the personal experiences of people going thru the process. I've had ET with Jak2 for 5 years now, on HU and baby aspirin. I haven't discovered any solution to the fatigue, but just started tramadol for the bone pain, so far so good. Tylenol does nothing for me, and can't take NSAIDS. BCU(LLS.org) has some good booklets and CancerSupportCommunity gave me a good booklet to keep track of meds and symptons and blood test results.

sdcgcarroll | @sdcgcarroll | Apr 3 10:07am

In reply to @nohrt4me "@sdcgcarroll My feeling is that you are better off with a doc who is conservative about..." + (show)

@nohrt4me right? Because after all… we look fine😞

drbart86 | @drbart86 | Apr 3 11:35am

Lots of good comments here. Just remember that everyone had a slightly different journey. I see where some people have very little intervention (such as only low dose aspirin), moderate (varying levels of HU for many years, and others that move to more potent medications (Jakafi, Besremi, etc).
I was diagnosed 8 years ago and did fairly well on HU for about 3 years, no real symptom load typically associated with ET. I did end up on a high dose of HU to control platelets. Then I became intolerant to HU - lost 30 lbs in less than a month; and ever since have had symptom load gradually increasing - especially fatigue. Have been on Jakafi ever since starting with 5 mg 2X/d and now on 15 mg 2X/d. Increasing as my platelets slowly increase.
I was going to a really great hemeotologist. 4 years ago attended a LLS (now Blood Cancer United) conference and asked about specialists in MPNs. Fortunately, one was located in the metro area I live. Went to see him for a 2nd opinion (by the way never feel guilty to do this). What I liked was he is involved in clinical trials, so I let him know my interest in participating, while remaining with my current doc. Applied to a trial and have been with him ever since. Ended up not qualifying for that trial but am now currently on a different one (unfortunately on the standard of care arm not the test drug).

Just remember that you in control of your health. Not all hemeotologists are as aware of MPN so consider finding one the few true specialists (west of the Mississippi, there are probably less than 10) to get 2nd opinion. You may have to travel but it is well worth it and the 2 I have visited with (the second only because I am thinking to move to that area) are willing to work with your current doc. Educate yourself, good resources are from Blood Cancer United, MPN Research Foundation, Voices of MPN, among others. All have literature and some offer counseling, financial support, etc.
Know that you are not alone, but trust your doc, be careful about random advice from other sources as started this post - only you will be the true expert for you.
Best to all.

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