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    Wall_raise-act-would-help-caregivers

    Calling all Caregivers! The RAISE act - (Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers - is geared to help us, but it needs your support to pass. Read the article, then contact your congressmen and senators, telling them to support RAISE and Family Caregivers!
    http://www.aarp.org/politics-society/advocacy/info-2015/rally-congress-for-caregivers-raise-act.html

    1 Comment
    • BoiseB's Avatar
      BoiseB

      Is there a petition that I can sign.

      over 3 years ago
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    kashubian asked a questionStomach Cancer

    Ibrance (palbociclib), approved Feb 2015, anyone using this?

    • jenniferd's Avatar
      jenniferd

      Hi, I have been taking Ibrance for 3 months.. I've actually felt ok so far..a Little tired sometimes, also my white cells were a little low, but I haven't gotten sick.. I have 4 children and I thought it was gonna be a problem, but so far I've been pretty lucky.. Good luck..

      about 3 years ago
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    kashubian shared an experience

    Celebration (His mutation matches an approved targeted treatment!): While he did not match a treatment in the MATCH trial, we now know more about his cancer. It is now well differentiated, rather than moderately differentiated. It is also exhibiting a CDK 4 amplification. There was a breast cancer drug fast tracked to approval only this last February, the CDK 4 amplification and the targeted therapy have been seen in gastric cancers at the EG (esophageal/gastric) junction and used to treat it. The drug, Ibrance, is very expensive, $118,200-annually-expensive. We are fortunate to have done the application to the trial, which gave us the genetic mutation of his cancer, which gave us a report with which to attemp to get approved for treatment with Medicare...or we will have to seek other means such as approaching the manufacturer directly. We're taking this as being an even better answer than the one we were praying for; not an experimental treatment, but an approved one!

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    kashubian shared an experience

    Drug or Chemo Therapy (Chemotherapy): Ibrance (Palbociclib) is the treatment that matches his mutation, a CDK 4 amplification. Newly approved just months ago (Feb 2015), it is very expensive. We are currently waiting to see if Medicare will pay (he had to go on Medicare after 2 years on disability), hoping the MD Anderson genome report will bolster our case for why we want this expensive treatment. If Medicare won't cover this therapy, we have a few other avenues to explore. Praying.

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    kashubian shared an experience

    Clinical Trial (applied for the MATCH trial - Molecular Analysis for Treatment CHoice solid tumor trial): Cleared initial screening step. Difficulty finding doctor willing to biopsy, tumor around aorta and pancreas (all things are not where they were prior to gastric pull-up). Accomplished biopsy via EUS (oesphageal ultrasound). Biopsy sent to MD Anderson in Houston, TX for genome sequencing. This is the largest trial of its type, and is historic. 10 arms, more to be added as targeted therapies are developed, 22 targeted therapies, 140+ genetic mutations plus their variants. This trial is presently expected to be ongoing. Visit the NCI for more information, it's both freghtening and exciting to be on the cutting edge of what oncology will look like in the future. Then comes the wait while his tumor is analyzed. The waiting is the hardest part. When the report came back, his cancer did not match a treatment in the trial.