I have ET a blood Cancer and I need advice.. Terry

@terese7, you've received many helpful and reassuring replies from members. I agree that hearing the words cancer and chemo is scary. It sounds like you need to learn more about the treatment to feel good with your decision. When talking to your doctor, you might start with these questions:
- Why do you recommend hydroxyurea as the best treatment for me?
- What are the benefits and risks (possible side effects) of this treatment?
- Are there alternatives?
- How does this treatment help?
- What happens if I decide to not take hydroxyurea?
- Can I get a referral to an integrative medicine doctor to discuss options for managing treatment?

More and more cancer centers and oncology specialists are open to discussing and integrating complementary medicine in programs called Integrative Medicine or Integrative Oncology. Integrative medicince is offered at many cancer centers of excellence, including Mayo Clinic.

Here's a link to more information about Mayo Clinic's Integrative Medicine programs
– Integrative Medicine and Health https://www.mayoclinic.org/departments-centers/integrative-medicine-health/sections/overview/ovc-20464567

Integrative options can help with managing proven effective treatments and might be something to look into.

This is the type of information I have been seeking for quite some time. It seems that patients are treated in a "standard" way unless questions arise. We all have individual needs and having options can help make our journey less stressful and perhaps provide a better outcome. Thank you for your input and the abundance of information this support group provides to all of us. Thank you Mayo Clinic!

Personally, I was more scared of stroke or heart attack than the words cancer/chemo when I got ET Jak2 diagnosis. I've been on HU for 3 1/2 years now, so far so good.

I am so grateful for all the information I have received from the members of this Mayo Clinic group.
I have researched Hydroxyurea and found it is an extremely toxic drug. However, if you are over 60 and have the JAK2 mutation, you are deemed "high risk" by your oncologists and are told that Hydroxyurea is the only answer.
With my fear of Hydroxyourea I am thrilled that there may be an alternative treatment. I plan to look into Mayo Clinic's Integrative Medicine programs.
Thank you, Colleen, for suggesting these programs. I will weigh my options.
'Terry

Hi Terry,
I am also looking into alternatives. Two things I came across, resveratrol and quinine. Supposedly, both might lower platelets, not enough data so far.

I found quinine as well. I also found cinnamon. Unfortunately, it is difficult to get additional information on the form or amount to take. If I find any more information, I'll be in touch. If you are successful in your quest, please let me know!

Please, do. Thank you. I shall do the same. I am researching the subject.
Good luck.

Hi Terry,
When considering complementary or alternative treatments, be open-minded yet skeptical. Learn about the potential benefits and risks.

Keep in mind that natural substances can also have toxicities, adverse side effects and treatment interactions. Supplements are not regulated and can be marketed without rigorous clinical testing.

I encourage you to ask questions and to not dismiss hydroxyurea. It may be the right option for you along with integrative medicine. Integrative medicine can include proven standard of care medications that are life saving. In this Mayo Clinic Q & A Podcast. Dr. D'Andre talks about how integrative oncology can be incorporated into conventional cancer care at Mayo Clinic.

Deb, may I ask what your HU dosage is (what you started with & what it is now)? I started daily HU (1 pill) in December & my platelet count dropped sharply in the first month, with no side effects, but has been rising slowly since.

How high is your platelet count, may I ask?