Living with lung cancer - Introduce yourself & come say hi

Yes when I discovered i immediately e-mailed Maggie the oncologist/clinical study nurse she consulted regular oncologist and he felt this would still provide good information. and she said I told them that as well, but I think they thought the axillary node would be safer to biopsy.

We just assumed since it was the supraclavicular neck lymph node that was not responding that would be the one again biopsied - its been the one biopsied the last 2 times one done in April 2018 after the 12 weeks of chemo and the other done within the last 6 months - they done the LT Axilla Lymph node in Oct/Nov 2017 when they found the cancer involved the lymph nodes of the chest and when examining after the PET found it and the supraclavicular neck lymph node swollen (which is now more visible than back then) they done the LT Axilla Lymph node first and said if it came back positive they would not move up to the supraclavicular neck lymph node that day -

To me I think it would of been the supraclavicular neck lymph node since from what was discussed about the Genomic testing about mapping out the tumor characteristic and why it was not responding and if there is any treatment/chemo that is available but what do I know I am only a common lay person... there is follow up after the test results are in

Yes there is a lot of medical terminology... but not new to it mother was a nurse, I took the EMT course for my home town in fall of 1984-Jan 1985; done non-paid volunteer training was the top of my class and and was told I got the highest scores of anyone of the service on the state exam Maybe it will help me to understand the DNA test i took for my family genealogy of which with all goign on I have not had time to study but its out there of others to contact me in my family research which is slow at this moment too.

cindylb- Oh not again! Just incredible. I can only imagine the frustration you are both feeling. But there is good news. How is he feeling physically?

Many of you know her as @merpreb or Merry, Volunteer Mentor. To survive lung cancer (twice) is one thing, but to live through it, to share your experience and support others, is another. Read about Merry’s journey with multifocal adenocarcinoma of the lung, on Mayo Clinic’s Social Media Network (MCSMN) blog, "Experts by Experience."

– Stopped in My Tracks – Experts by Experience https://socialmedia.mayoclinic.org/2019/04/19/stopped-in-my-tracks-experts-by-experience/

@kanaazpereira- Thank you.

Hello Merry!
On we go I guess. It's good news, so he's a little less depressed and that's great. Physically he has some new symptoms but they don't attribute them to the cancer (although the fatigue certainly may be). I'm off to pick up antibiotics for the chest pain (he does have COPD as well) and a stronger heartburn medication. They had thought it could be cancer of the esophagus at one point but have ruled that out, so it's GERD or similar. He doesn't exhibit any symptoms of lung cancer in particular. Weirdest cancer ever. I'm hoping it will just go away (who doesn't hope that with cancer?) Hugs to you........

@lizdorn - Good morning. I haven't heard from you in quite a while and am wondering how you are doing. You were also weaning off of Zanax if my memory serves me, how is that going? We have some great discussions going with new lung cancer patients and if you are feeling up to it please join us. How are you feeling?

@gazza- Good morning. I know that you turned down traditional treatments I would like to know how you are feeling. Have you needed to have any more tests done since February?

@margot69– Good morning Margot. How is chemo going? I just wanted to tough base to see how you are feeling.

Hi Merry,
Nice of you to think of me. Admittedly, have only scanned the Boards as little information was being addressed regarding LCNELC. Unfortunately, there are few, good Oncologists hete but I did go to see Dr. Wakelee at Stanford and made an appt to see her again this Monday. She is, technically, not my treating physician, but has been great answering some of my questions. I just finished my 4th round of Chemo (Carbo/Etroposide), followed by 5 days of Granix shots. Treatments seem to be a bit rougher each time. After the first 2 rounds, a PET scan was done which shiwed some shrinkage and no new spots. I have a repeat PET on 4/27. I have been told this Chemo will only help for so long and I started them in January. The Onc here is not good about discussing things so I want to go back to Stanford. Myself, friends and family cannot find many options for treatment. I was told, because she feels I have an underlying immune problem, immunotherapy might be risky for me. Add my age, and I might not qualify for any trials. Truthfully, trying those drugs scares the hell out of me as my body does not to,erate drugs well. Between Chemo treatments, dealing with low WBC and RBC, feeling sick, I think I have maybe one week a month I can try to function. We seldom go anywhere. Just a bit down lately. My cough is wirse and fatigue is catching up with me. Just hoping this Chemo is still holding things at bay. After 3 different diagnosis, I hope they got it right. Thanks again and hope you are doing well!!

Get the port. It will save you from having to have a vein accessed for each infusion. 10 years ago I had one put in for breast cancer chemo, then had it removed a year later. It was such an easy procedure. Then had it replaced last year for lung cancer. It is an easy operation, never even think of it still being there. Am keeping it this time around & having it flushed every 6-8 weeks to keep it in good working order. That way the nurses can draw the blood tests from the port with no problems. So easy & totally painless.