ET and chemical pre-cautions?

Posted by mlmk0601 @mlmk0601, Oct 11, 2023

Im 64 got diagnosed with ET about 2 years ago based on blood work (Jak2). My hematologist says I’m textbook ET My count is at 713K and on 2 81mg aspirins a day so far. My doctor asking told me to stay away from chemicals like pesticides and Benzene. Has anyone else had any other mentions on what to stay clear off when having these blood disorders?

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@loribmt

Hi @preacherswife1977, Considering that you have already tried HU and Anagralide and both medications were not tolerated well, this may be a situation where your insurance may pay for the interferon treatments.
You can try contacting the insurance company yourself or have your oncologist office write a narrative to justify the treatment.
Here is an article from Cancer.org regarding getting preauthorization for medications and writing appeals if treatment is denied.
https://www.cancer.org/cancer/financial-insurance-matters/managing-health-insurance/getting-medical-pre-approval-or-prior-authorization.html
One of my chemo meds was over $22,000 per 3 week dosage. At the time of the prescription my oncologist informed me there might be potential grants for funding this medication, often from the manufacturer. A representative from Speciality Pharmacy called me to set up the med order and to see if I qualified for the discount or grant. I didn’t qualify, but after my doctor talked with a case manager from my insurance company, I was finally approved for the med. I only had to co-pay the first month, after that it was paid for.

You will learn more Wednesday at your appointment. Make sure you talk to the doctor about the insurance denial. This won’t be the first time they’ve seen a denial for a treatment. So your doctor will be your best advocate for getting this approved.
You may also want to call the doctor’s office tomorrow to let them know your insurance is denying the prescription. That may be the better approach than waiting until Wednesday.
Good luck! Let me know what you find out, ok?

There are also potential grants whic

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Thank you for the information

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I got my medication this past Friday and also received a grant to cover it. I could not believe how expensive it was. Got my first injection yesterday and so far also good. I get another one in two weeks. So far so good!!!

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@loribmt

Hi @preacherswife1977, Considering that you have already tried HU and Anagralide and both medications were not tolerated well, this may be a situation where your insurance may pay for the interferon treatments.
You can try contacting the insurance company yourself or have your oncologist office write a narrative to justify the treatment.
Here is an article from Cancer.org regarding getting preauthorization for medications and writing appeals if treatment is denied.
https://www.cancer.org/cancer/financial-insurance-matters/managing-health-insurance/getting-medical-pre-approval-or-prior-authorization.html
One of my chemo meds was over $22,000 per 3 week dosage. At the time of the prescription my oncologist informed me there might be potential grants for funding this medication, often from the manufacturer. A representative from Speciality Pharmacy called me to set up the med order and to see if I qualified for the discount or grant. I didn’t qualify, but after my doctor talked with a case manager from my insurance company, I was finally approved for the med. I only had to co-pay the first month, after that it was paid for.

You will learn more Wednesday at your appointment. Make sure you talk to the doctor about the insurance denial. This won’t be the first time they’ve seen a denial for a treatment. So your doctor will be your best advocate for getting this approved.
You may also want to call the doctor’s office tomorrow to let them know your insurance is denying the prescription. That may be the better approach than waiting until Wednesday.
Good luck! Let me know what you find out, ok?

There are also potential grants whic

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I got my mediation Friday and got my first injection Monday. Thankful I received a grant to cover it. This is going to be $63,000 for one year. This is unbelievable. I could not believe it and still can't. This is ridiculous

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what injection for which diagnosis? Been taking anagrelide with baby asprin for 20+ years to manage platelets (ET)...no side effects or strokes so far at 73!

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Hi! I haven't been told to stay away from anything like benzine. Are you taking hydroxyurea? It dropped my platelets from 650 to 373 in 4 months. It steadily dropped each month since I started taking in March 2024. Hopefully next blood test will show platelets continue to drop. I may be able to reduce the amount of hydroxyurea I'm taking.
My doctor says it's critical that I get & keep my platelets under 450.

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@magicgirl

Hi! I haven't been told to stay away from anything like benzine. Are you taking hydroxyurea? It dropped my platelets from 650 to 373 in 4 months. It steadily dropped each month since I started taking in March 2024. Hopefully next blood test will show platelets continue to drop. I may be able to reduce the amount of hydroxyurea I'm taking.
My doctor says it's critical that I get & keep my platelets under 450.

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Started taking Hydroxyurea every day in mid March my platelets went down from ~788K to 486K in two months but my reds are low a bit out of range so my hematologist switch me to every other day and I re-test at the end of August. I feel less weak so I’m thinking my reds are up. Hopefully my platelets will drop a bit more and not go up. Fingers crossed

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@mlmk0601

Started taking Hydroxyurea every day in mid March my platelets went down from ~788K to 486K in two months but my reds are low a bit out of range so my hematologist switch me to every other day and I re-test at the end of August. I feel less weak so I’m thinking my reds are up. Hopefully my platelets will drop a bit more and not go up. Fingers crossed

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Good luck. My red blood count went below range for a while too. But then they went up to acceptable range. I test again in September. Keeping my fingers crossed for you too!

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@mlmk0601

Started taking Hydroxyurea every day in mid March my platelets went down from ~788K to 486K in two months but my reds are low a bit out of range so my hematologist switch me to every other day and I re-test at the end of August. I feel less weak so I’m thinking my reds are up. Hopefully my platelets will drop a bit more and not go up. Fingers crossed

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yep…my reds fell below acceptable level and with the drop any energy I had disappeared! But when hyd was boosted again my energy came back to acceptable level(not super) and I knew it without seeing reds numbes! Of course I’m also trying to factor in decision I made to stop baby aspirin after maybe 25+\~ years. I’m 91, been on hydrox 3+|~ years…. my stable of docs split on baby aspirin issue! Decision to drop aspirin reached after reading lengthy Mayo article which was posted here by another person. But I can’t seem to relocate article (Help anybody?)! My age and other health issues were big factors in decision! the article did not take sides but pointed to many factors to be weighed! Well worth reading…if it can be relocated!

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@wisner

yep…my reds fell below acceptable level and with the drop any energy I had disappeared! But when hyd was boosted again my energy came back to acceptable level(not super) and I knew it without seeing reds numbes! Of course I’m also trying to factor in decision I made to stop baby aspirin after maybe 25+\~ years. I’m 91, been on hydrox 3+|~ years…. my stable of docs split on baby aspirin issue! Decision to drop aspirin reached after reading lengthy Mayo article which was posted here by another person. But I can’t seem to relocate article (Help anybody?)! My age and other health issues were big factors in decision! the article did not take sides but pointed to many factors to be weighed! Well worth reading…if it can be relocated!

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Hi Merle, do you remember some of the key points about the baby aspirin article you read here? I can try to help you find it.

Things that might help me find it: What was it about the article that led you to decide not to take the baby aspirin any longer? What triggered your concern?

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@loribmt

Hi Merle, do you remember some of the key points about the baby aspirin article you read here? I can try to help you find it.

Things that might help me find it: What was it about the article that led you to decide not to take the baby aspirin any longer? What triggered your concern?

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concern no#1 for me was bleeding should I fall etc. I have probably been lucky not to have fallen etc at 91 but I am ultra careful…but accidents happen! It is a gamble in my opinion! I really don’t want to try and interpret article…it was/is very long! Think it is very worth reading anyone with ET!!

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