Living with lung cancer - Introduce yourself & come say hi

@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?

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........

@kanaazpereira- Thank you.

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/

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?

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.

As you say at first glance it is good, but I can see how you would feel unsettled and frustrated. Hope morel night comes to help you and your husband know what is going on. It must be difficult not to KNOW. Praying for you both and hoping you get more clarification between now and the next three months.

Hello all,
Well.............results are in from my husband's latest PET scan for his 'possible lung, we don't really know what kind of cancer it is' test. Over a year of tests and they still don't have any more information on the cancer type, there is no visible point of origin or type, the tumor in my husband's lung has gotten smaller (only slightly) and the activity in his lymph node and cancer activity in his blood is up (only slightly). The doctors assessment, "Well, we thought when we first diagnosed this that you would be dead now, but the cancer, as of today is 'stable' and we'll see you again in three months".
It's good news at first glance but it is still a mystery, very unsettling and frustrating, as there is still no path forward, no treatment plan and no answers. Oddest thing ever. Hugs to all.

@reibur1951- Good morning. It's incredible the new terms and treatments that have shown up for lung cancer just in the past few years. You are a medical dictionary now! Did you ask why they did the biopsy on the nodule that was showing success?

Update friend had his radiation consultation on Monday to be 10 days from what said Monday - Friday with Saturday & Sunday off - called today while gone
for the appointment for the for the mask & simulation set up for this coming Wednesday. there could be up to 12 days all total with the set-up and follow up after the radiation treatments.

Back from the Genomics and Biospy (https://iuhealth.org/find-medical-services/precision-genomics the skinny guy in the blue suit is the one we met with Dr. Schneider) and hoping the ultrasound lab did not screw up - they done the LT Axilla Lymph node (this one that has shrunk & responding to treatment and not growing) was under the impression that they were to do the supraclavicular neck lymph node which is the one is growing and not responding to chemo & prembo This took well over an hour longer than before Guess they thought it would be safer to the the LT Axilla Lymph node than the supraclavicular neck lymph node it is very noticeable in size.

The literature we got the testing is GPS Cancer molecular profiling and Liquid GPS The Genomics Dr. looked mainly at the supraclavicular this was to find out if there is any other chemo/treatment to get it under control Right now i don't see in my mid how testing etc the wrong lymph node will provide the data they want but what do I know....

Shall be a tiring couple of weeks with the radation trips...