Adenocarcinoma NSC Lung Cancer Stage 3. Advice? Success stories?

Posted by detroitmom23 @detroitmom23, Feb 7, 2023

I recently found out that I have stage 3 adenocarcinoma NSCLC with mass in lung and spread to lymph nodes in neck, they want to do four rounds of chemo and if shrunk enough possibly radiation afterwards. I have asked them not to give me a prognosis because my fragile mind can’t handle it.
My first chemo treatment is tomorrow and I’m a nervous wreck. Any advice on getting through it?
Any success stories would be SO welcome right now.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

Agree with Lisa. I’ve had/have Same type of cancer but stage 4. March 5, 2019. Took chemo treatment 7 months and keytruda another 24 months
Chemo was really tough but cancer is dormant and I’m thankful for all the prayers that got me this far.

Colleen’s

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@rockpine

Thank you Lisa! After reading the lined posts with @nonobaddog's personal experience on side effects of immunotherapy, it has really sunk in that we really need to take into consideration the downsides of immunotherapy.

My mom was doing relatively well in the first 3 month after starting Dabrafenib and Trametinib in end of March 2023. She has a couple days of >98 degree fever and was brought to urgent care and went through chest CT and echocardiogram besides blood tests. Nothing really stood out and her fever was gone after taking some Tylenol. But her ALT started to creep up over time. She was getting more and more tired as time went by and she lost quite a bit of appetite. She was down 3 lbs after 5 months. In early Sep, right before the start of proton beam therapy with concurrent chemotherapy, her ALT and AST were both above 100. We were really concerned about her liver function because of that. But she was instructed to stop the targeted drugs before the proton beam therapy. She had weekly blood test while doing proton, and the ALT and AST numbers continued to drop each week and went back to normal at the 4th week.

We are about to resume Dabrafenib and Trametinib for her because one of her oncologist is adamantly against adjuvant immunotherapy (after proton beam therapy) because of mom's autoimmune related mild ILD. We will have to monitor her liver function very closely this time though.

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All of the treatments come with their own side effects, finding one that does more help than harm is difficult especially when there are other conditions in the mix. Cancer is tough, and the treatments need to be tougher, but they need to allow us to live too.
Wishing for the best for you and your mom.

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@lls8000

Hi @rockpine, Your poor mother has really put through some obstacles. I hope she is feeling as well as can be expected.
Here are a few comments, from @nonobaddog about Durvalumab that you may or may not have seen. It looks like they did experience a thyroid issue.
https://connect.mayoclinic.org/comment/810515/
https://connect.mayoclinic.org/comment/860477/
All of our treatments come with their own set of side effects. How is she tolerating the targeted therapy?

Jump to this post

Thank you Lisa! After reading the lined posts with @nonobaddog's personal experience on side effects of immunotherapy, it has really sunk in that we really need to take into consideration the downsides of immunotherapy.

My mom was doing relatively well in the first 3 month after starting Dabrafenib and Trametinib in end of March 2023. She has a couple days of >98 degree fever and was brought to urgent care and went through chest CT and echocardiogram besides blood tests. Nothing really stood out and her fever was gone after taking some Tylenol. But her ALT started to creep up over time. She was getting more and more tired as time went by and she lost quite a bit of appetite. She was down 3 lbs after 5 months. In early Sep, right before the start of proton beam therapy with concurrent chemotherapy, her ALT and AST were both above 100. We were really concerned about her liver function because of that. But she was instructed to stop the targeted drugs before the proton beam therapy. She had weekly blood test while doing proton, and the ALT and AST numbers continued to drop each week and went back to normal at the 4th week.

We are about to resume Dabrafenib and Trametinib for her because one of her oncologist is adamantly against adjuvant immunotherapy (after proton beam therapy) because of mom's autoimmune related mild ILD. We will have to monitor her liver function very closely this time though.

REPLY
@rockpine

Hi @nonobaddog My mom was diagnosed with stage 3B (possibly 3C) NSCLC in Feb. She had a tumor of 7cm in her lower left lobe and mets to mediastinum lymph nodes. She did 5 months of targeted therapy with Dabrafenib and Trametinib, since she has the BRAF 600E mutation. That shrank the tumor to 3cm in Aug. She just finished 30 sessions of proton beam therapy plus 6 weeks concurrent Carboplatin and Paclitaxel a week ago. That's the same treatment as you! My mom has Sjogren's Syndrome, so her oncologist is concerned that she might get peumonitis and don't recommend doing immunotherapy next. Instead, continuing with targeted therapy of Dabrafenib and Trametinib was recommended. I am really curious if you have any adverse side effect with the immunotherapy of Durvalumab. Could you comment?

Jump to this post

Hi @rockpine, Your poor mother has really put through some obstacles. I hope she is feeling as well as can be expected.
Here are a few comments, from @nonobaddog about Durvalumab that you may or may not have seen. It looks like they did experience a thyroid issue.
https://connect.mayoclinic.org/comment/810515/
https://connect.mayoclinic.org/comment/860477/
All of our treatments come with their own set of side effects. How is she tolerating the targeted therapy?

REPLY

I don't think the doctor assumed anything. He pulled up on his computer research papers that had been peer reviewed showing THC lowered the effectiveness of immunotherapy.

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@mrnootz

The day I started Chemo & Immunotherapy, I asked the doctor if he was going to give me a script for pot. I told him that I had always heard that people on Chemo were given pot to help with the sick feelings from the treatment. The doctor said NO, that was only for people with stage 4 cancer. He said they were going to fill me with poison and cure my cancer, so no THC or CBD in any form during treatment and for a year after treatment because Immunotherapy keeps on working that long.

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Interesting, assume he thought you wouldn’t need it.

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@spikeb1

Why no THC or CBD? Assume you are including gummies?

Jump to this post

The day I started Chemo & Immunotherapy, I asked the doctor if he was going to give me a script for pot. I told him that I had always heard that people on Chemo were given pot to help with the sick feelings from the treatment. The doctor said NO, that was only for people with stage 4 cancer. He said they were going to fill me with poison and cure my cancer, so no THC or CBD in any form during treatment and for a year after treatment because Immunotherapy keeps on working that long.

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@mrnootz

My stage 3a lung cancer was cured using Ablation and Immunotherapy by the doctors at the Mayo Clinic in Rochester this summer. The whole thing was almost outpatient, however, no THC or CBD during and for a year after treatment.

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Why no THC or CBD? Assume you are including gummies?

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My stage 3a lung cancer was cured using Ablation and Immunotherapy by the doctors at the Mayo Clinic in Rochester this summer. The whole thing was almost outpatient, however, no THC or CBD during and for a year after treatment.

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@nonobaddog

I have posted about my lung cancer before but here is a quick smmary and update. I was diagnosed with Stage 3B NSCLC in February 2022. I had 6 weeks of chemo, Paclitaxel and Carboplatin once a week. I also had Proton radiation therapy over those same 6 weeks, 5 days a week for a total of 30 sessions. Then I had 12 months of immunotherapy using Durvalumab every 4 weeks for 13 sessions.
The update is that the immunotherapy ended in April and I just had a CT scan checkup and it is NED (No Evidence of Disease). That is as good as it gets and of course that makes me feel very good. We will continue with the periodic scans but as of now Mayo Clinic has sure done a great job in treating my cancer. The outstanding result speaks for itself but I want to say how much I appreciate my entire oncology team and everybody that treated me. They really know how to deal with patients and were so wonderfully nice and they kept me feeling positive during this entire trying time.

Jump to this post

Hi @nonobaddog My mom was diagnosed with stage 3B (possibly 3C) NSCLC in Feb. She had a tumor of 7cm in her lower left lobe and mets to mediastinum lymph nodes. She did 5 months of targeted therapy with Dabrafenib and Trametinib, since she has the BRAF 600E mutation. That shrank the tumor to 3cm in Aug. She just finished 30 sessions of proton beam therapy plus 6 weeks concurrent Carboplatin and Paclitaxel a week ago. That's the same treatment as you! My mom has Sjogren's Syndrome, so her oncologist is concerned that she might get peumonitis and don't recommend doing immunotherapy next. Instead, continuing with targeted therapy of Dabrafenib and Trametinib was recommended. I am really curious if you have any adverse side effect with the immunotherapy of Durvalumab. Could you comment?

REPLY
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