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.

drbart86 | @drbart86 | Apr 3 11:38am

In reply to @sdcgcarroll "@nohrt4me right? Because after all… we look fine😞" + (show)

@sdcgcarroll so true. And it gets old constantly adjusting to "my new normal".

sdduan | @sdduan | Apr 3 11:52am

hi all, just wanted to give an update on my treatment. I am triple negative so there is no common gene mutation. I was on HU for 1000mg per day and platelet counts still in mid 700000s. RBC and WBC was down a lot. Fatigue was getting me. Starting 2 months ago, I switched to Besremi 200mcg every two weeks. It seems very effective. The count is now below 400000. Just need time to increase and stabilize WBC/RBC. Besremi treatment is said to have enduring effectiveness. Just wanted to share this option with those who are not responding to HU well.

drbart86 | @drbart86 | Apr 3 1:36pm

In reply to @drbart86 "Lots of good comments here. Just remember that everyone had a slightly different journey. I see..." + (show)

@drbart86

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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@drbart86
For those looking for a specialist see this website
https://mpncancerconnection.org/mpn-experts/

nohrt4me (Jean) | @nohrt4me | Apr 4 7:54am

Yes, we are all different, and it would be great if researchers had some answers for why some cases of ET do not respond well to HU or other drugs. Some people respond within a few months. It took 18 months of gradually increasing HU to get my platelets to budge out of 600 to 800s, but once they got to 400s, they've stayed there x 8 years (knock wood). I know this could change at any time, but after 18 years with ET, I feel lucky not to have had a clot or progression. I am glad there alternatives now in case it stops working.

janeto1357 | @janeto1357 | Apr 4 11:19am

I was on HU for one full year and could not handle it no matter how many times a week or different adjusted dosages. I spent most of my time exhausted and napping constantly, my Dr could care less and was very abrupt and inconsiderate and heartless at every visit. I would beg him or suggest. Something new I read and he would say he was the doctor! I went to my PCP and he suggested I try someone else I have been seeing a new DR for over a year now and really like him. I explained HU was unbearable for me but I have always been on a baby aspirin for years just because. He checked my labs and they were normal and have continued to be normal to this day, just two days ago they were 390. I have not on HU just taking a baby aspirin daily and on my own from reading everything I could about ET I have been doing some added dietary things. I drink green tea every morning, drink a 1/4 glass of 100 percent grape juice every morning or in the evening have a glass of cranberry juice mixed with sparkling water every so often and always have a bar of 72 percent or higher of dark chocolate in my house and just take a small square. I mentioned to my Dr about some of this especially the green tea and he said there has been some reports studied that green tea can lower platelets. It may be helping my platelets or just maybe a coincidence but I figure it is a small price to pay and can't hurt so I keep doing it. The one thing I have developed from HU is neuropathy of the feet which is unbearable and I was only on it a year. As far as figured now I still have it but I also have stage four CKD so it can be from that plus getting old!!!???? Which we all know sucks. I hope you feel better and decide what will be good for you. Take care and have a great day. Janet

drbart86 | @drbart86 | Apr 4 1:29pm

In reply to @1995victoria "I found the BloodCancerUnited (formerly Leukemia/Lymphoma Society) a good source of information on ET www.LLS,org for..." + (show)

@1995victoria
To second the use of BCU, they are a tremendous resource. One program to consider is their First Connections where they will pair you with another patient with your condition. Not for medical advice but just to help with general visits and places to find help. I think with ET (or other MPN) we often find visiting with others quite helpful and supportive especially when recently diagnosed.
https://bloodcancerunited.org/resources/patients/peer-to-peer-support

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