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For About 8 Months I've Been Eating Spinach And Broccoli Every Day.

A myMPNteam Member asked a question 💭
Wilkes Barre, PA

Turned out to be a bad move seeing I have hi platelets.
They have risen dramatically after staying steady. I was in the 480 range before the diet change. Too much vitamin K and other platelet producers. I'm trying to go in reverse with a steady diet of quinine and ginger and grape juice added in high quantities. We'll see I'm at 619 as of today, and only on aspirin cause I'm resisting hydrea.

December 29, 2024 (edited)
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A myMPNteam Member

Mark, you could be putting your health in danger by trying to be your own doctor, to put it bluntly. With your present routine, the first thing that comes to my mind are bleeding issues, kidney damage, abnormal heartbeat, or even severe allergic reactions after the cumulative effects take their toll. Of course, people have consumed quinine water as a tonic for generations, but there is a minuscule amount of quinine in one glass, actually. It is the fact that you are experimenting with things when you have a serious disease is worrisome. Will you please check out these things with your provider. We want to see you around here for a long time. Happy New Year, Mark.

December 29, 2024
A myMPNteam Member

My thoughts are to check with your physician before making drastic changes in anything. My question is do you feel secure with what your doctor says if not then maybe you should look for a new physician.

December 29, 2024
A myMPNteam Member

To all, I just had an appointment with my hematologist/bone morrow specialist on Friday. He is well aware of my situation and circumstances. He wishes me to start hydroxyurea and is understanding about my reluctance to do so. I realize it's probably inevitable I will start it. I made an agreement with him if my platelets continue to rise at this current faster rate I would finally bite the bullet and start the hydrea. But I also had a conversation about other meds instead of the hydrea, as I don't like what I'm hearing about its side effects........can anyone understand this!

December 29, 2024
A myMPNteam Member

I doubt that the dietary changes will have much impact on the thrombocytosis. My own experience is that diet can be effective on systemic inflammation, however.

I would suggest consulting with an Integrative or Functional Medicine doctor if you wish to pursue complementary health approaches. It is best to get expert consultation in this area,.

As you are aware, there are other options should you need cytoreduction. Hydroxyurea is only one of the choices. The interferons are also recognized by the NCCN as a preferred treatment option. I found Pegasys (and later Besremi) to be more effective and much easier to tolerate than HU. There are also drugs in clinical trials.

It is also worth noting that not all MPN expert doctors follow the age-based protocol for starting cytoreduction. We do not all age the same. Providing you understand the risks, you do not have to choose cytoreduction.based on age-alone. The decision is based on your treatment goals and risk tolerance.

Wishing you all the best.

December 29, 2024
A myMPNteam Member

Mark, I have been taking Hydraea for 2 years and I am still taking it. I have not had any significant side effects and my platelets are under control. Doctors have more knowledge than we do and based on your analysis they recommend what has been proven to be the best up to this point.

December 30, 2024

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