ET and chemical pre-cautions?

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

Same

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-5217909
https://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?

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

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

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!

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!!!

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

I saw my hematologist today. My platelets are over a million. He said we had to do something to get them down. He suggested interferon. I go back Wednesday for education on this. I called my insurance company and they do not cover this. I do not know what the next step with be but I cannot afford to pay out of pocket for injections each week. Seem like this hole gets deeper and darker.

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