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Wed, Mar 13 10:09pm · High platelet count in Blood Cancers & Disorders

I had genetic testing at GW University's Cancer Center. Last summer, I worked with Memorial Sloan Kettering Cancer Center (MSKCC) and an additional panel of advanced genetic tests — 400, were performed, to uncover gene mutations.

Wed, Mar 13 2:23pm · High platelet count in Blood Cancers & Disorders

Hi again,
To add to my post from 3/1 and address the concerns you posted today, there are 3 significant concerns for those with elevated platelets: blood clots, stroke and heart attack.
Like your son, I am being monitored and taking 1 81mg aspirin daily. This is a great place to be, all things considered. During the course of being monitored and my platelets begin to elevate to a significantly higher rate, then I'd need to begin taking Hydroxeurea, lower my count. Provided HU is effective, it will need to be continued forever, so not needing it is a wonderful thing.

Fri, Mar 1 1:32pm · High platelet count in Blood Cancers & Disorders

There are a series of genetic tests that can be performed to help determine mutations, as well abone marrow biopsy and aspiration. Depending on the findings, his Hemotologist-Oncologist will likely have him followed, schedule periodic CBCs to track his platelet counts and might also put him on a daily 81mg aspirin. Unsure if he’s had any “episodes,” (clots, strokes or heart attacks), elevated platelets is ofen a wait and watch situation. Many people are a symptomatic, which can be a good thing, but also disarming. A couple years ago, while treating a breast issue, I was formally diagnosed by my Oncologist Hemotologist with Essential Thrombocythemia and fortunately have had no “episodes.” I opted to get additional input from MDs at Sloan Kettering, to mostly get their views on treatment and prognosis. That act was good for my emotional wellness, because blood shows all. There is a ton of information to read, but the condition is rare and not well understood, I keep researching, have joined many ET groups, but have had to remain as calm as possible and take comfort in knowing that I’ve done everything that I can do, so as to not make myself mentally ill behind this hughly uncrertain health challenge.

Wed, Jan 9 11:03am · Essential Thrombocythemia in Blood Cancers & Disorders

Susan, can you please clarify why your daughter was taken off Hydroxyurea and instead put on Interferon? I've worked with 2 hemotologist-oncologists, who made the recommendation of taking Hydroxyurea. Not sure if your daughter wasn't responding to Hydroxyurea? Did she switch to Interferon because Hydroxyurea is a lifetime commitment and Interferon isn't? I would appreciate knowing, understanding that while both drugs directly affect platelets, the Hydroxyurea is known for being well-tolerated, unlike the Intefeuron.
Whatever your daughter's situation, I am hopeful that she can be managed for the long-term.

Dec 11, 2018 · Tests for blood cancer ...the bills!! in Blood Cancers & Disorders

A recent patient of Memorial Sloan Kettering, I had a series of advanced genetic tests. $17k and my co-pay was $1,600. I'm already sick, but this took me to the edge! Very disturbed….
A friend of mine has an incurable form of chronic leukemia. His meds are $13k/mo.
Our political "leaders" are more busy fundraising and not dealing with big pharma and killing us all.

Oct 25, 2018 · Breast Cancer and Neuropathy in Breast Cancer

The plan post surgery was to take AIs for 5 years. It took 3 months before the side effects really hit me: joint pain and weakness in my hands, fingers and wrists, numbness & tingling, in addition to general fatigue, which persisted. After 6 months, I transitioned to the second AI, hoping for . some improvement. No change, so after being on it for 6 months and continuing to be miserable, I took the last AI, recognizing that everyone’s experience is different. I continued treatment for another 6 months and quit. I am now contending with elevated platelets and a recent diagnosis of Essential Thrombocythemia, which makes me ineligible to take Tamoxifen, because of the elevated risk of clots & strokes. I am now looking at the prospect of taking a Hydroxyurea, which is supposed to be well tolerated. We’ll see.

Oct 25, 2018 · Concerned about the side effects of anastrozole in Breast Cancer

After three months, I began to experience terrible joint pain and numbness in my fingers, hands & wrists, and fatigue set in — my greatest challenges. No hair loss.
Wishing you good health!

Oct 2, 2018 · Concerned about the side effects of anastrozole in Breast Cancer

Each of the aromatase inhibiters bring terrible joint problems and fatigue. There's no getting away from the significant symptoms while taking them.When conferring with your oncologist, ask them to describe how the physical and emotional symptoms different from one another.