Essential Thrombocythemia: Looking for information and support

Hello all,
I’ve also had type 2 diabetes for 12 years.
I’ve lost so much weights in the last 2 years because tried to eat less for my diabetes, used more energy than I had as I did not know I had ET. Now I ate more to gain some weights and even that I only could gain 2 pounds in the last 2 months, that was it ( I bet ET caused it and planned to take hydrea when I meet with my specialist next time), and my glucose level went up, it is frustrated.

More to add, I am female, 61 years old, ET intermediate risk.
Any advices, thoughts, ideas to share how to deal with both diabetes and ET are appreciated.
Have a good day!
Rose

I am 65 years old and seem to be a rare male here. Not surprising since Essential Thrombocythemia affects twice as many females than males. Also I guess most males are not big on 'sharing'. 


I was diagnosed with ET JAK2 in June following routine blood tests. 
I have already been taking 100mg of aspirin daily for a couple of years due to my family history of cardiac issues.
I have not had a bone marrow biopsy as my haematologist said it would not change the current treatment though I may have to have one down the track depending on my blood results.

Looking back, I have had intermittent headaches for no apparent reason and assume now they were ET related. Who knows?


I am grateful to you all for your openness and honesty and appreciate your comments and suggestions.

Hi Gary. You’re right, statistically women do appear to outnumber men with ET cases. So, welcome to Mayo Connect where you can add the male perspective to this blood condition of having elevated platelets. 😉

It looks as though you did have positive results with a defect in the JAK2 gene, which can cause myeloproliferative conditions like ET. Often the first line of treatment, to avoid potential side effects of too many platelets, is a daily aspirin. Fortunately you were ahead of that game with your aspirin regimen already in place.
Now that you’ve been diagnosed, how often will your doctor want followup blood work?

Thanks for your welcome Lori!

Following the first appointment with my haematologist, I had more blood tests including some for a research program run by my haematologist (he is also a research scientist).
He told me that some results would be available when we meet next in September, others (DNA tests) may take up to six months. He said we would meet every three months for the time being but I don't know how often follow up blood work will be done. I assume it partly depends on the initial test results.

20+ years ago my platelets were 1800.....out of the blue. No symptoms, annual checkup.Given Anagrelide (Agrylin then), 5 mg twice daily, did the job. Went from monthly, to quarterly to annual visits. Ten years later a new hemotologist (mine retired) did a very poor bone marrow biopsy (five painful attempts), switched me to HD, which threw all my blood off so I was seeing him weekly, had all kinds of other symptoms. Took me 8 weeks to get a DIFFERENT referral (oncology institue hematologist) who put me BACK on Anagrelide stating if it works why switch? So, if the aspirin is working, why switch? Doc likes my platelets to be below 450 so I try to make certain I'm taking meds as prescribed BEFORE blood work. Sometimes I forget in the evening and have mis-judged what I needed while traveling, didn't get back in rhythm before appointment. Oh, my. YES ET has not limited my life, thank God!

Thank you, I agree!!! Aging isn't for the young and inexperienced.

That's great that your doc sees you every three months at this beginning phase. Gives you lots of time to get questions answered.

Bone marrow biopsies might be done less frequently now because the blood tests are definitive. Just 10 years ago when I was referred to the hemo, I tested neg for Jak2 mutation, but the false neg rate was high. A year later, they started doing the CALR test and, bingo!, I was a rarity within a rare disease. Why I can't I get those kinds of odds playing Lotto?

Ask the doc about this, but I can think of a couple of possible reasons:

1. You have the CALR mutation, and CALRs are less likely to clot. Docs sometimes let CALR patients run up to 700 or 800 before they want to give HU.

2. You are under 60 with no history of clots and are considered low risk.

Could be a combo of those things.

The old rule of thumb was that HU was good for 20 years and then it might begin to cause more serious side effects. It may be that newer studies on long-term effects of HU show that it's safe to take for longer periods, especially if doctors are giving the lowest effective dose. That might also be something to discuss with yr doctor.

Hardly know where to begin! Diagnosis ET at 87ish…put on hydrox immediately with platelets # checked every two months. Number varies anywhere between high 400s and as high as 750-800 depending on amount of hydrox involved! The more hydrox the lower platelets BUT higher hydrox very much results in lower red blood = big time lack of energy! What to do? Yes, I’ll be 91 Sept! All I want to do is rest…. Now on only 500mg daily hydrox effort to raise red blood to acceptable level. Had been on 1500md daily.

If you have a primary care doc, could you discuss quality of life issues with him or her? PC doc might not want to fiddle with your HU doses, but can give you ideas for how to talk to your hematologist about balancing platelet control with general well-being. Hematologist sometimes just treat the numbers instead of the patient.