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Posts (45)

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.

Oct 1, 2018 · Concerned about the side effects of anastrozole in Breast Cancer

Trigger fingers come about because of the shortening of tendons in ones fingers, impacting the flexibility of the joints and fingers get stuck and pop vs free movement. They exacerbate the joint pain side-effect that I experienced as a side-effect from AIs (Aromatase Inhibiters). There's a knot that presents at the tendon, below the joint of the affected finger and are very painful. I had my orthopedist "treat" it, which reduced the inflammation and also did some massage therapy on my own.

Aug 1, 2018 · abdomianl pain, loss of apettie, weight loss, repeated infections in Blood Cancers & Disorders

I am very disappointed by your difficult journey. After all you’ve done, I would gat a copy of every test and go to a different physician.

Jul 21, 2018 · Essential Thrombocythemia in Blood Cancers & Disorders

Hi Misty45,
Given your report out on Hydrea & the fact that you’ve been talking it for 20 years, do you take it daily? Do you anticipate take my it for the rest of your life? While managing it for 2 decades, have you had any “episodes” (stroke, clot or heart attack)? Of course I hope not. I am asking to get a sense of the drug’s efficency?
Deeply grateful that you’re forthcoming and willing to share details of your personal experience. Thank you always.