New to Site

[catjack61]

Hello, I was recently 2 months ago diagnosed with a rare lung cancer, getting palative care with radiation and possible immunotherapy drug. Been in the hospital for over 2 months now, cant wait to get out. Came here to learn what I can, see how others are doing and see if there are other forms of treatment out there.

[Denzie Moderator Volunteer]

Welcome to the Lung Cancer Support Boards. Can you tell us more about your cancer? What type is it and what is the rare mutation? What treatment have you had?

There are several different groups of patients with rare mutations that have private webpages. Perhaps we can put you in touch with one of them. They can put you in touch with others with the same mutation.

This webpage sponsoris the Bonnie Addario Lung Cancer Foundation. They fund research with a couple different rare cancers like ROS1and they are helping patients who have had progression on standard TKI treatments find new paths of research.

Patient education is an important touchstone of their foundation as well. You might want to watch a couple of their Lung Cancer Livingrooms on YouTube. Or learn more about them at lungcancerfoundation.org.

Two months is an awfully long time to be stuck in the hospital. I’m sending hope that you’re out of there soon. I look forward to reading more from you.

[ElmerFudd314]

Can't believe hospitalization for 2 months. I would follow up on anything Denzie has to say. My prognosis was rather dire. (Age 69 dude exposed to agent orange.). Diagnosed with nsclc in December 2017. Didn't have any of the "good" mutations where a person could be put on one of the new wonder drugs like Keytruda . Nevertheless standard treatment every 3 weeks with chemo drugs Pemetrexed and carboplatin have produced improvement on PET scans. My oncologist dropped the full 2 drug chemo after 6 cycles and now I'm just on the pemetrexed, for "maintenance" chemo. Also had radiation to the head as a first step, 5 straight days and some of it targeted "cyber knife". Lost my hair with the radiation after 2 weeks but it has grown back. I don't consider my condition as "dire" anymore and am in an exercise class. Also shopping for a lake cabin. Good luck on your treatment !

[KimGO2 Partner]

Hi catjack61. I am with the Bonnie Addario Lung Cancer Foundation. Please give me a call at 650-779-8286 or email at [e-mail] . We can go into detail of your specific type of lung cancer and discuss options. Sending you hugs! Kim