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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I was diagnosed with ET and Jak 2 I am taking hydrea . I doctor never mentioned staying away from those chemicals.

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@remo1110

I was diagnosed with ET and Jak 2 I am taking hydrea . I doctor never mentioned staying away from those chemicals.

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Same

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Hi @mlmk0601 Whether you have ET or not, pesticides and products containing Benzene should be avoided because of their links to cancer. If your doctor brought this up specifically, maybe they feel there’s a correlation between your disease and activities or exposures that may have caused your condition? Examples: If you’re a farmer, using pesticides or herbicides your entire career this can potentially be detrimental to your health. If you worked in the auto industry using spray paints, solvents, etc.

Here is an excerpt from CDC on the effects of Benzene. I’ve put links to the full article below:

“Stay away from cigarette smoke. If you are person who smokes, try to quit. It’s also important to avoid secondhand smoke. Cigarette smoke is a major source of benzene exposure.

Pump gas carefully and use gas stations with vapor recovery systems that capture the fumes. Avoid skin contact with gasoline.

When possible, limit the time you spend near idling car engines. This can help lower your exposure to exhaust fumes, which contain benzene (as well as other potentially harmful chemicals).

Use common sense around any chemicals that might contain benzene. Limit or avoid exposure to fumes from solvents, paints, and art supplies, especially in unventilated spaces.”

https://www.cancer.org/cancer/risk-prevention/chemicals/benzene.html

https://emergency.cdc.gov/agent/benzene/basics/facts.asp
~~~
A little more reading for you. Articles regarding ET and the JAK2 mutation. and another about the dangers of pesticides.
https://www.verywellhealth.com/things-that-elevate-your-platelet-count-401336

https://www.verywellhealth.com/jak2-mutation-5217909https://www.epa.gov/pesticide-science-and-assessing-pesticide-risks/human-health-issues-related-pesticides

With your ET, your doctor is treating you with baby aspirin to keep the platelets from forming clots. Are you taking any other medications?

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Yes, my Heme and PCP have both encouraged me to stay away from as many chemicals as possible and practical. Now I read labels and buy foods as clean as possible.

But it’s not just foods! I clean my home (kitchen and bath) using diluted vinegar instead of premixed products. Saves $ too!

Cosmetics? I stopped wearing much of what is found in drug stores and use products that are “leaping bunny” certified. (You can look these up online.)

Microfiber clothes and water are just as good -if not better- than wipes for removing make-up. Bar soap doesn’t have SLS like liquid soap, costs less and lasts longer.

Once you start looking, you’ll find choices everywhere.
Good luck!
Sherry

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@loribmt

Hi @mlmk0601 Whether you have ET or not, pesticides and products containing Benzene should be avoided because of their links to cancer. If your doctor brought this up specifically, maybe they feel there’s a correlation between your disease and activities or exposures that may have caused your condition? Examples: If you’re a farmer, using pesticides or herbicides your entire career this can potentially be detrimental to your health. If you worked in the auto industry using spray paints, solvents, etc.

Here is an excerpt from CDC on the effects of Benzene. I’ve put links to the full article below:

“Stay away from cigarette smoke. If you are person who smokes, try to quit. It’s also important to avoid secondhand smoke. Cigarette smoke is a major source of benzene exposure.

Pump gas carefully and use gas stations with vapor recovery systems that capture the fumes. Avoid skin contact with gasoline.

When possible, limit the time you spend near idling car engines. This can help lower your exposure to exhaust fumes, which contain benzene (as well as other potentially harmful chemicals).

Use common sense around any chemicals that might contain benzene. Limit or avoid exposure to fumes from solvents, paints, and art supplies, especially in unventilated spaces.”

https://www.cancer.org/cancer/risk-prevention/chemicals/benzene.html

https://emergency.cdc.gov/agent/benzene/basics/facts.asp
~~~
A little more reading for you. Articles regarding ET and the JAK2 mutation. and another about the dangers of pesticides.
https://www.verywellhealth.com/things-that-elevate-your-platelet-count-401336

https://www.verywellhealth.com/jak2-mutation-5217909https://www.epa.gov/pesticide-science-and-assessing-pesticide-risks/human-health-issues-related-pesticides

With your ET, your doctor is treating you with baby aspirin to keep the platelets from forming clots. Are you taking any other medications?

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I only take 2 81 mg aspirin and Levothyroxine 137 mcg (My Thyroid was removed about 10 years ago due to A thyroid storm)

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Nope...and I've been on anagrelide for 20+ years. No symptoms I'm aware of, platelets under control unless I forget about taking medication regularly!

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When I was a toddler I was outside playing and the plane came over to spray the crops,...well.... I also got sprayed. My mom immediately took me inside and gave me a bath. I am wondering if that is where my problem began. I am extremely sensitive to meds. I could not take the Hydrea or Anagralide.

I went to the Mayo Clinic yesterday for a consult. The dr I saw was great!!! Her suggestion for next treatment would be interferon injections weekly or Eliquis (blood thinner). I see my hematologist tomorrow and we will discuss a treatment plan. Yesterday was the highest my platelets had ever been 825. She called me today and didn't want me to be alarmed because of my numbers.

She says I'm ok until I get to a million my hematologist doesn't want me to get to a million. Different opinions. Different suggestions, Will see what I am told tomorrow.

The guessing game continues!!!

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@preacherswife1977

When I was a toddler I was outside playing and the plane came over to spray the crops,...well.... I also got sprayed. My mom immediately took me inside and gave me a bath. I am wondering if that is where my problem began. I am extremely sensitive to meds. I could not take the Hydrea or Anagralide.

I went to the Mayo Clinic yesterday for a consult. The dr I saw was great!!! Her suggestion for next treatment would be interferon injections weekly or Eliquis (blood thinner). I see my hematologist tomorrow and we will discuss a treatment plan. Yesterday was the highest my platelets had ever been 825. She called me today and didn't want me to be alarmed because of my numbers.

She says I'm ok until I get to a million my hematologist doesn't want me to get to a million. Different opinions. Different suggestions, Will see what I am told tomorrow.

The guessing game continues!!!

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The most likely interferon is Pegasys. Since I was already on Eliquis, a blood thinner, for AFib I do not have to take low dose aspirin while taking Hydroxyurea,
Best wishes, Eileen

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