Roz Posted January 19, 2019 Share Posted January 19, 2019 Hi Tomm, Sounds like you are doing great with your treatments up to this point. Keep it up! I don't have a new treatment plan at this point but I do have a new medical oncologist and I have a lot of confidence in her. She wants me to have CT's every two months. So far, that's the plan. We are hoping that the research from some of the Phase I clinical trials will start to become available soon. She also said that new clinical trials for KRAS in NSCLC will be coming out in the summer. Hope you continue to make great progress!! Ro Link to comment Share on other sites More sharing options...
Rower Michelle Posted February 5, 2019 Share Posted February 5, 2019 Hi Tomm Just checking in to see how you are doing? Let us know when you are able. Michelle Link to comment Share on other sites More sharing options...
Tomm Posted February 6, 2019 Author Share Posted February 6, 2019 Hi Michelle, I'm doing well after 20 radiations and 4 chemos. The radiation is next to my throat but the Manuka Honey helped stop swelling. Weight staying the same, blood work all in normal range. I can eat anything & a salad. Drinking lots of Coconut water,Natural coconut water contains five key electrolytes: sodium,potassium, calcium, magnesium, and phosphorus. I bought a small indoor trampoline . Only side effect is some fatigue. Ten more treatment days and then I look into Durvalumab. Anyone in remission taking this drug? I hope things go well for all... Tomm Link to comment Share on other sites More sharing options...
Rower Michelle Posted February 6, 2019 Share Posted February 6, 2019 Hi Tomm, Wow, that's great news! I'm so glad your treatment plan is going well for you. It's a good sign when you're able to maintain weight during radiation. I love your spirit and determination! That's a big key to the path of remission in my opinion (plus your hippie protocol!). I've got a spinal MRI today (cervical and thoracic) to evaluate progress of Alectinib on the small bone mets. Next chest CT scan is 2-18. Overall I'm feeling pretty well. I've had excessive stress in the last three weeks with my position being eliminated and transitioning from short term disability to long term disability. The mail just keeps on coming. I keep telling myself this is all short term and in a few more weeks the paperwork pile (which is close to 6 inches high) will dwindle down with slow progress. There is a fabulous thread on Durvalumab in the Immunotherapy postings-some of them are pretty humorous. All the best-stay strong! Michelle Link to comment Share on other sites More sharing options...
Tomm Posted February 20, 2019 Author Share Posted February 20, 2019 Hi Michelle, hope you got good results from you MRI and CT yesterday, Please post the results as many are watching your progress and plans.The thing I use for stress is CBD oil in a tincture and it helps me to sleep . Today was my last day of chemo and radiation. I will wait about 6 weeks to get a CT and see if I'm back in remission. If in remission I'll start Durvalumab and take it every two weeks for a year. Didn't loose any weight, keep most of my hair so far except on my neck where I got radiation. No neuropathy , CBD oil stopped that. All my blood work is in the normal range and was told I can mingle in public... Fatigue light compared to 2 years ago when I got radiation to 4 tumors deep in my lungs and this time just one close to the my skin by my neck...ouch. .When this started I could see and feel the lump... now nothing to see or feel. good health to all... Link to comment Share on other sites More sharing options...
Rower Michelle Posted February 20, 2019 Share Posted February 20, 2019 Hi Tom Thanks for checking in! I’m sitting in the airport now watching planes get de-iced at KCI. Heading to FLA to forget about cancer. Our first trip since my diagnosis. Beach instead of acupuncture! I get the CT results next week- taking a page out of Bob’s book: no news is same/good news. Glad to hear your treatment has gone well so far. I saw an article posted on another forum that CBD was contraindicated with immunotherapy. 2017 published study. Can’t find the link on my phone but thought you might want to potentially explore. The AirPark Express Bus Driver this morning name was Ned! Hoping it’s a sign!! 😂 Praying for another great outcome for you! Let the hippie protocol roll! Michelle Link to comment Share on other sites More sharing options...
LaurenH Posted February 20, 2019 Share Posted February 20, 2019 Tomm, we're glad to hear that you finished chemo and radiation! We hope you get great results on your upcoming CT! And we hope you have a wonderful trip, Michelle! Safe travels! Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
Tomm Posted April 3, 2019 Author Share Posted April 3, 2019 Remission again!!! NED.. I had SBRT radiation 30 times with a total 6360 grays. I had 5 rounds of chemo but missed the last one as my liver numbers were not good. I ate 3 grams of pot oil a day. Blood work all back in normal range. I have a gene mutations of the PDL-1 with 95%> positive. I start Durvalumab on April 18th for a year. I'm on my way to the Durvalumab link to join the other explorers of this new med. Best of luck to my fellow travelers Link to comment Share on other sites More sharing options...
LexieCat Posted April 3, 2019 Share Posted April 3, 2019 Awesome news--keep it up! Link to comment Share on other sites More sharing options...
PaulaC Posted April 3, 2019 Share Posted April 3, 2019 That’s great news Tomm! Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 3, 2019 Share Posted April 3, 2019 That’s so awesome! Thanks for sharing such wonderful news with us! You’ll love the Durva Twins (aka the Bob & Kleo show). Are you still taking the Mistletoe injections too? Congrats on the hard work! Michelle Link to comment Share on other sites More sharing options...
BridgetO Posted April 3, 2019 Share Posted April 3, 2019 Yay for your NED! Link to comment Share on other sites More sharing options...
Tom Galli Posted April 4, 2019 Share Posted April 4, 2019 NED is INDEED good news. Stay the course. Tom Link to comment Share on other sites More sharing options...
Tomm Posted April 4, 2019 Author Share Posted April 4, 2019 thanks for all the good wishes ..this forum is a big help to me and I know to others too Rower Michelle... I did find the article that says CBD was contraindicated with Immunotherapy, it said RR was half with cbd but it did not effect OS of PFS .. maybe I skip CBD on the week of infusion, still looking into it, thanks for that info. I hope you enjoyed the beach and got a good CT.. world peas Link to comment Share on other sites More sharing options...
Steff Posted April 4, 2019 Share Posted April 4, 2019 Congrats Tomm! Link to comment Share on other sites More sharing options...
St Michael Posted January 11, 2020 Share Posted January 11, 2020 Hi Tomm. Just checking in. How are you doing? Link to comment Share on other sites More sharing options...
Tomm Posted January 11, 2020 Author Share Posted January 11, 2020 Hi St Michael, I'm doing well. After chemo radiation for the lymph node in my neck I became NED again. I started durvalumab last April and will finish this April. I'm still NED and get another CT next tuesday. When I 1st got cancer over 3 years ago there was no Durvalumab. I hope you mom is NED but if not please know that there are lots of new treatments for lung cancer that were not here 3 years ago. we don't live in the past or the future... Be here now Link to comment Share on other sites More sharing options...
St Michael Posted January 11, 2020 Share Posted January 11, 2020 Thank you for the quick response and encouraging words. I wish you the best results on your next scan. God speed. Link to comment Share on other sites More sharing options...
Recommended Posts
Archived
This topic is now archived and is closed to further replies.