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agness · 02-27-2016, 07:36 AM

I was so shocked by what occurred that I didn't post an update.

After passing the WA State Senate Health committee unanimously the Right to Try legislation was blocked by Senator Andy Hill (R) who wouldn't even let it get heard on the Senate floor to be voted on. Senator Hill believes evidently that by giving terminal patients access to developing meds that a) no one will participate in clinical trials, and b) no one will take the chance in a trial of getting the placebo.

The WA medical association, the hospital association, the biotech industry and even a major health insurer in our state all tried to lobby in FAVOR or getting Right to Try in Washington. Senator Hill has clearly demonstrated a lack of leadership and getting caught up in a personal agenda over the needs of the people.

Senator Hill was able to participate in a clinical trial for inoperable lung cancer and was cured. I have checked with four HER2 specialists and with my leptomeningeal diagnosis I am ineligible, it is a stated exclusionary criteria for almost ALL trials. The only trials I might participate in are IT Herceptin which I am already receiving off-label, or through FDA Compassionate Use which several oncologists have dismissed as too lengthy and complicated paperwork-wise.

Right to Try legislation is dead for 2016 in Washnington and cannot be heard again until 2017. Ours was based on Colorado's laws with some modifications. Gov Briwn if California objected to their approved legislation but it was entirely different and was not restricted to terminal patients.

02-27-2016, 07:36 AM	#5
agness Senior Member Join Date: Aug 2014 Location: Seattle, WA Posts: 285	Re: Right to Try Laws I was so shocked by what occurred that I didn't post an update. After passing the WA State Senate Health committee unanimously the Right to Try legislation was blocked by Senator Andy Hill (R) who wouldn't even let it get heard on the Senate floor to be voted on. Senator Hill believes evidently that by giving terminal patients access to developing meds that a) no one will participate in clinical trials, and b) no one will take the chance in a trial of getting the placebo. The WA medical association, the hospital association, the biotech industry and even a major health insurer in our state all tried to lobby in FAVOR or getting Right to Try in Washington. Senator Hill has clearly demonstrated a lack of leadership and getting caught up in a personal agenda over the needs of the people. Senator Hill was able to participate in a clinical trial for inoperable lung cancer and was cured. I have checked with four HER2 specialists and with my leptomeningeal diagnosis I am ineligible, it is a stated exclusionary criteria for almost ALL trials. The only trials I might participate in are IT Herceptin which I am already receiving off-label, or through FDA Compassionate Use which several oncologists have dismissed as too lengthy and complicated paperwork-wise. Right to Try legislation is dead for 2016 in Washnington and cannot be heard again until 2017. Ours was based on Colorado's laws with some modifications. Gov Briwn if California objected to their approved legislation but it was entirely different and was not restricted to terminal patients. __________________ Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall. Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy. 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED. 10/27/15 atypical uptake in right cerebellum - inflammation? 12/1/15 Leptomeningeal dx. Starting IT Herceptin. 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly 3/2016 - stable scan 5/2016 stable scan 7/2016 pseudoprogression? 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT 11/2016 Cyberknife to temporal lobe, HBOT just prior 12/2016 - lesions starting to show shrinkage 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone. Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing. Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.