1. < Blood Cancers & Disorders

Essential Thrombocythemia: Looking for information and support

Posted by shenriq @shenriq, Jun 4, 2018

I was recently diagnosed with Essential Thrombocythemia, a rare incurable blood cancer. Platelet count aside, I am asymptotic. This current condition morphed from (constitutional) thrombcytosis, something I’ve lived with for 25+ years. While the new diagnosis was the result of a bone marrow aspiration and biopsy, my age was an additional factor, which was completely disarming, having been walking around unwittingly for the past 8 years! While at the low end of risk for clots, heart-attacks and stroke, nothing has truly changed - except the “C” word. No chemo yet, but active discussion about hydroxyurea. Uncertainty about ET is anxiety provoking and swoethatl, but I’m feeling betrayed by my blood. I’m looking for all information about ET, the chemo and support.
Thanks!

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

janemc | @janemc | Aug 5 8:04am
In reply to @nohrt4me "Pill organizer helps, but be careful handling HU. I put dry kidney beans in my organizer..." + (show)
@nohrt4me

Pill organizer helps, but be careful handling HU. I put dry kidney beans in my organizer as place holders for the HU (one on Sat Sun Tues Thur and two on Mon Wed Fri). Then I slip the HU into a paper pill cup so I'm not touching it.

Jump to this post

Brilliant!!

REPLY
1 reply
nohrt4me | @nohrt4me | Aug 5 7:26am
In reply to @janemc "Kudos for rising above ET AND what I'd call the incompetence of your doctors . ...." + (show)
@janemc

Kudos for rising above ET AND what I'd call the incompetence of your doctors . . .

Recently I began to use a weekly pill organizer. Now I never miss a dose of HU or aspirin.

Jump to this post

Pill organizer helps, but be careful handling HU. I put dry kidney beans in my organizer as place holders for the HU (one on Sat Sun Tues Thur and two on Mon Wed Fri). Then I slip the HU into a paper pill cup so I'm not touching it.

REPLY
1 reply
janemc | @janemc | Aug 5 7:10am
In reply to @garyintlv "I am 65 years old and seem to be a rare male here. Not surprising since..." + (show)
@garyintlv

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.

Jump to this post

Gary, for muscle pain (headaches too), I get relief from lidocaine. Whether delivered via spray, ointment or patch, lidocaine absorbs into the skin. It creates a cool, tingling sensation that occupies the nerves, muffling pain.

Spraying the back of my neck helps with headaches. A patch gives hours of relief when my back is acting up.

An oncology nurse assured me that lidocaine doesn't interfere with aspirin. Hope you'll hear the same from your doctor!

REPLY
janemc | @janemc | Aug 4 7:36pm
In reply to @wisner "Hardly know where to begin! Diagnosis ET at 87ish…put on hydrox immediately with platelets # checked..." + (show)
@wisner

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.

Jump to this post

You are dealing with so much, Merle. You need the HU . . . but not too much HU! Frustrating!

Sometimes all we can do is take it easy.

REPLY
janemc | @janemc | Aug 4 7:32pm
In reply to @docoltun "20+ years ago my platelets were 1800.....out of the blue. No symptoms, annual checkup.Given Anagrelide (Agrylin..." + (show)
@docoltun

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!

Jump to this post

Kudos for rising above ET AND what I'd call the incompetence of your doctors . . .

Recently I began to use a weekly pill organizer. Now I never miss a dose of HU or aspirin.

REPLY
1 reply
janemc | @janemc | Aug 4 7:28pm
In reply to @roseneu "Hello all, I’ve also had type 2 diabetes for 12 years. I’ve lost so much weights..." + (show)
@roseneu

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

Jump to this post

I am so sorry for all you are going through, Rose.

Hope someone with both ET and diabetes will chime in with some useful suggestions for you.

OXOXOXOXOXO

REPLY
1 reply
janemc | @janemc | Aug 4 7:26pm
In reply to @garyintlv "I am 65 years old and seem to be a rare male here. Not surprising since..." + (show)
@garyintlv

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.

Jump to this post

Welcome, Gary -- we're glad you're here.

My amateur guess is that it's our platelet-heavy ET blood that causes the frequent headaches. I'm have fewer headaches now that HU's brought my count down into the 500s. Headaches are the second-most reported problem with ET (fatigue is the first).

Somehow it's good to know we're not going through all this alone!

REPLY
nohrt4me | @nohrt4me | Aug 4 9:14am
In reply to @wisner "Hardly know where to begin! Diagnosis ET at 87ish…put on hydrox immediately with platelets # checked..." + (show)
@wisner

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.

Jump to this post

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.

REPLY
Merle Richman | @wisner | Aug 3 6:28pm

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.

REPLY
2 replies
nohrt4me | @nohrt4me | Aug 3 3:47pm
In reply to @winmil99 "I was diagnosed with ET jak2 mutation a yr ago june..My plts range between 450 and..." + (show)
@winmil99

I was diagnosed with ET jak2 mutation a yr ago june..My plts range between 450 and 680 ..My hematologist has me on 2 baby aspirin a day and doesn't want me to start HD until they hit 1000 ..thoughts?

Jump to this post

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.

REPLY
View MoreView Less
Please sign in or register to post a reply.