1. < Blood Cancers & Disorders

Needing help understanding ET and how it affects my life

Posted by ashleygm @ashleygm, Oct 18, 2023

I’m 28 and have not been formally diagnosed with Essential Thrombocythemia, but my platelet counts have been consistently high since I was at least 16 (and by “high” I mean 800,000 to 900,000). I found out donating blood, and now I’m a deferred donor because of this blood issue. I had a doctors appointment around the same time and the doctor ordered my blood work to be redone because they thought they had mishandled it because the readings were high. All of my other blood work is fine. The doctor told my dad to take me to the children’s hospital in Dallas, but he never did. I haven’t been able to afford health insurance, so I wasn’t able to get my platelets checked again until about three years ago. I got yet another referral to a cancer center, but because I didn’t have insurance at that time either they refused to make me an appointment. I finally got insurance through my job and tried again this year, but the cancer center doesn’t take my insurance and I can’t afford to pay $500 per visit not including testing. I highly expect to need a bone marrow biopsy. Over the past couple years I’ve noticed I’m getting sicker. It takes longer for me to recover than everyone around me. My spleen gets uncomfortable sometimes, but conveniently not when I actually have an appointment. I don’t know what to do. I’m so anxious about living with this disorder and not being able to afford to even properly get diagnosed let alone manage it. I’m worried if I somehow get the money to get a diagnosis that it will be harder to get on insurance because it’s a type of cancer. Does anyone have any advice for managing this without being able to see a doctor? Or any advice on resources I could possibly use to help me be able to see the specialist I need to? I’m in Texas if that helps.

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Rhonda Gregory | @rjgregory440 | Oct 20, 2023

MD Anderson will likely be too far a commute for you...I'm going to suggest you get an appointment with an internal medicine physician that accepts your insurance, tell them what the doctors told your dad, then ask for a referral to a hematologist (you probably won't have to ask). You are very young to have this problem and you should get medical attention as soonas you can. Where in Texas are you? I have a lot of family and can source them for medical reccomendations.

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1 reply
nohrt4me | @nohrt4me | Oct 20, 2023

People with ET do not necessarily need to go to a state-of-the-art cancer center. I can't afford that either. My area hematology oncologist is plugged into the Mayo Clinic for MPN updates, so I get good care.

A good internist with an interest in hematology should be able to help.

If you have a primary care doc, tell him your situation and ask if his office can help you find a specialist within your insurance coverage.

Good luck. I have been in your situation, and the fact that a working young person is denied care is an absolute stain on our nation.

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1 reply
1995victoria | @1995victoria | Oct 20, 2023

I agree about your remark about anxiety. I sat for about a month emotionally paralyzed, until I spoke to a friend, who gave me a kick in the butt I needed to get moving. Luckily I live in NYC and have MemorialSloanKettering a short bus ride away. It was sort of a second opinion appointment, but when I met the Dr and NP, I knew I wanted them to take care of me, and they never failed. Maybe if you have to travel to an good cancer facility, they can start you off, and then a local Dr can monitor your blood locally. best wishes.....v

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2 replies
ashleygm | @ashleygm | Oct 20, 2023
In reply to @laurasugargrove "I don't have any suggestions relative to the cost associated with medical care (sorry). But I..." + (show)
@laurasugargrove

I don't have any suggestions relative to the cost associated with medical care (sorry). But I do think it is important for you to find care - and the right care. There are thousands of hematologists out there, but MPNs (of which ET is one) is so rare that many hematologists just are not knowledgeable in this field. And if you are going to get to the bottom of your diagnosis and get on the right course of treatment, I would urge you to start with a known expert. The following website has some good information and a list of proven doctors.
https://mpncancerconnection.org/2017/12/what-is-an-mpn-specialist/
Also, you mention that you are in TX, and it is my understanding that MD Anderson has extensive expertise in MPNs. A link to their website:
https://www.mdanderson.org/cancer-types/myeloproliferative-neoplasm.html
And here is one more website with some helpful questions to ask your doctor.
https://www.mpnresearchfoundation.org/find-a-hematologist/
Certainly worth it to visit with a specialist and get initial bloodwork and genetic testing. A BMB can be pricey, but may be able to be deferred (I didn't have one for several years after diagnosis myself). As others have pointed out, some of the treatment is low cost. The risk of not doing so can be life threatening (e.g., clot, stroke).

The good news is that if you do get a confirmed diagnosis of ET, it can be easily manageable. Many people live for years/decades with few or no symptoms. Best of luck to you. Hugs

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Thank you for all the resources. I will definitely be having a look when I get home!

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ashleygm | @ashleygm | Oct 20, 2023
In reply to @1995victoria "I agree about your remark about anxiety. I sat for about a month emotionally paralyzed, until..." + (show)
@1995victoria

I agree about your remark about anxiety. I sat for about a month emotionally paralyzed, until I spoke to a friend, who gave me a kick in the butt I needed to get moving. Luckily I live in NYC and have MemorialSloanKettering a short bus ride away. It was sort of a second opinion appointment, but when I met the Dr and NP, I knew I wanted them to take care of me, and they never failed. Maybe if you have to travel to an good cancer facility, they can start you off, and then a local Dr can monitor your blood locally. best wishes.....v

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That would be nice. I just keep getting referred to the same center and my family wasn’t one for keeping up with doctor or dentist appointments so navigating everything medically is really confusing. I don’t know what I’m allowed to do or ask for or what’s even possible. This thread has been very helpful.

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ashleygm | @ashleygm | Oct 20, 2023
In reply to @nohrt4me "People with ET do not necessarily need to go to a state-of-the-art cancer center. I can't..." + (show)
@nohrt4me

People with ET do not necessarily need to go to a state-of-the-art cancer center. I can't afford that either. My area hematology oncologist is plugged into the Mayo Clinic for MPN updates, so I get good care.

A good internist with an interest in hematology should be able to help.

If you have a primary care doc, tell him your situation and ask if his office can help you find a specialist within your insurance coverage.

Good luck. I have been in your situation, and the fact that a working young person is denied care is an absolute stain on our nation.

Jump to this post

I figured I just needed a hematologist, but my insurance isn’t the best. It’s been a difficult search. That information is helpful though. Thank you!

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ashleygm | @ashleygm | Oct 20, 2023
In reply to @rjgregory440 "MD Anderson will likely be too far a commute for you...I'm going to suggest you get..." + (show)
@rjgregory440

MD Anderson will likely be too far a commute for you...I'm going to suggest you get an appointment with an internal medicine physician that accepts your insurance, tell them what the doctors told your dad, then ask for a referral to a hematologist (you probably won't have to ask). You are very young to have this problem and you should get medical attention as soonas you can. Where in Texas are you? I have a lot of family and can source them for medical reccomendations.

Jump to this post

I’m in Northeast Texas, close to the state border. Dallas isn’t too far of a drive. Neither is Tyler. I have a nice primary doctor. It all just comes back to money unfortunately for me to move forward with this. But I’m going to dig into it further.

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1 reply
ashleygm | @ashleygm | Oct 20, 2023
In reply to @pherbag "For 10 yrs my platelets ranged 950-1200. I was diagnosed with ET at age 41 back..." + (show)
@pherbag

For 10 yrs my platelets ranged 950-1200. I was diagnosed with ET at age 41 back in 2013. I rarely ever get sick, maybe once every 3 yrs. I stated taking Hydroxyurea a year ago and it has cut them to 400-750 range. I think the anxiety we all get will cause more side affects than the ET.

Jump to this post

Everyone’s experience is different. I wish I was asymptomatic, but you’re right about anxiety causing more side effects than this. Between mental health issues (depression, anxiety) and this it’s been difficult to see hope and not constantly worry I’m going to have a stroke randomly. Meanwhile, my dad wants to say “if it was serious something would have happened by now” :/

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nohrt4me | @nohrt4me | Oct 20, 2023
In reply to @1995victoria "I agree about your remark about anxiety. I sat for about a month emotionally paralyzed, until..." + (show)
@1995victoria

I agree about your remark about anxiety. I sat for about a month emotionally paralyzed, until I spoke to a friend, who gave me a kick in the butt I needed to get moving. Luckily I live in NYC and have MemorialSloanKettering a short bus ride away. It was sort of a second opinion appointment, but when I met the Dr and NP, I knew I wanted them to take care of me, and they never failed. Maybe if you have to travel to an good cancer facility, they can start you off, and then a local Dr can monitor your blood locally. best wishes.....v

Jump to this post

I have heard that that can happen--specialist provides care protocols/parameters for local docs to follow through on. It would be worthwhile asking the GP if that can be arranged.

In the UK, care is set up that way routinely. Talked to a guy in a remote Welsh village whose local doc consulted with Claire Harrison, the big name in MPNs in London, and her office provided a care plan for him. Patient was elderly and never had to leave home.

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1 reply
Rhonda Gregory | @rjgregory440 | Oct 20, 2023
In reply to @ashleygm "I’m in Northeast Texas, close to the state border. Dallas isn’t too far of a drive...." + (show)
@ashleygm

I’m in Northeast Texas, close to the state border. Dallas isn’t too far of a drive. Neither is Tyler. I have a nice primary doctor. It all just comes back to money unfortunately for me to move forward with this. But I’m going to dig into it further.

Jump to this post

Then I would make an appointment with your primary care and they can refer you to a hematologist. Likely they would do blood work to check for gene mutations, but for sure they will get you on hydrea to get your platelets down to a lower level. You are VERY young to have this problem and needto geta handle on it before you do start having the really bad symptoms (stroke/heart attack).

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