triciab
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Marion,
Thank you for your warm wishes. I consider myself very lucky right now to be doing so well.
I am enrolled in the phase II trial of Agios AG-120. Here is a link to the trial:
https://clinicaltrials.gov/ct2/show/NCT02073994
Regarding the transportation discount, I had heard about it through friends.
Hi Joe,
I am also live in NJ and I now receive my care from MSK. My oncologist is Dr. Maeve Lowery and I can’t say enough good things about her and her team. I also had experience with Dr. Jarnagin. Dr. Jarnagin implanted a pump that supplied high doses of FUDR chemotherapy directly to my liver. This was done after the standard of care of gemcitibine and cisplatin stopped being effective. Dr. Jarnagin’s surgical team and the care at MSK has been amazing. ( The liver pump therapy worked for 7 months until the cancer spread beyond the liver.)
As you are learning about this rare cancer, I would recommend that you have your mom’s tumor genetically sequenced. We chose MSK and Dr. Lowery specifically because she is involved in trials for my mutation, IDH1.
I am now on an IDH1 trial medication and I am happy to say, 2 years from my diagnosis, that I am feeling great.
PS – I commute to NYC via the Seastreak ferry. The American Cancer Society was able to get me a discount card for 1/2 price fares for me and a companion while under treatment. They may also offer discounts for other types of transportation.
