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New diagnosis NSCLC Stage 3B

Hi, all,
After beating stage 4 Renal Cell Carcinoma for 5 years, I was presented with this new diagnosis of Stage 3B NSCLC adenocarcinoma in Jan 2022. I have 2 lymph node involvements, one in my hilar lymph node, and one in my paratracheal lymph node. The disease has been staged 3B, pT1, pN2, cM0.

I have started chemo & targeted therapy with Carboplatin, Pemetrexed (Alimta) and Bevacizumab (Avastin). I am having 6 treatments, ending in May 2022.

Of particular concern is that I have been deemed to not be a good candidate for checkpoint inhibitor immunotherapy, due to the risk of pneumonitis from my existing lung diseases (COPD and idiopathic pulmonary fibrosis). Also, I'm not a candidate for radiotherapy due to the risk of damage to the already diseased lung tissue. So, I guess that my options are kind of limited. My results have been negative for all the genetic testing, as well as STAMP testing for MSH6.

I only have one more chemo treatment remaining. I'm tolerating it fairly well, except for the side effects of the Bevacizumab, which has been nose bleeds and flu-like symptoms. I also have severe constipation and severe fatigue.

Additionally, my wife has stage 4 breast cancer! She has had her first round of chemo and is responding well. She's now on chemo maintenance oral drugs, and is doing pretty well. As you can imagine, this makes our situation even more stressful and uncertain.

Our lives and our retirement plans have been completely upset by this cancer stuff. I am devastated.

  1. I am so sorry to hear of your (and your wife's) diagnosis. Wishing you all the best with your chemo treatments, and great only one left. I was diagnosed 22 years ago with Stage 3b, I had a lobectomy and six chemo treatments. That cancer never came back. I had a new primary last year that was Stage 1, thankfully surgery took care of it and so far I don't need more treatment, but I will know more after my scans the end of May. I know the roller coaster and mine and my family's life have been turned upside down also. But we keep one foot in front of the other. Thankfully there are more treatment options now than before. When will your post-treatment scan be? Please feel free to update us, we are in this together and here for each other! Warmly, Alisa, LungCancer Team

    1. Hi, Alisa. Thanks for the reply. Wow, 22 years! I didn't know that was even possible with stage 3B. Good for you! I'm so happy for you. Were the 6 chemo treatments all by IV? Wow, I'm having so many side effects from my chemo, I don't see how anyone could ever stand having 6 treatments. My post treatment PET/CT scan will be at end of May. Let's hope for a positive response!

    2. Hi , Yes, all my chemo treatments were by IV. I had carboplatin and taxol, as there weren't many other options back in 2000. I only had minor side effects, I was very lucky. But I was also 22 years younger, don't know how it would be now, but we do what we must ... Wishing you all the best with your upcoming scan, I have my post surgery follow up scan the end of May also, wishing a good report for us both! ~ Alisa

  2. Sorry to hear of everything that is happening. The fact that the beast of cancer has dipped into your retirement fund is so unfortunate. As Alisa mentioned luckily there are more possible options to review than before, and finding the right fit seems like another battle in processing. I wish you and your wife the very best while taking one day at a time on this new course that life is now taking you both.
    Best!

    1. Thanks for the reply Yolanda. Our cancer diagnoses are affecting our retirement plans to the extent that we've had to forego our plans of selling our house and moving to a rural area of CA where we could have more land. Now we need to stay close to our cancer treatment center, which is Stanford. I certainly hope that there are more options for my treatment, but as I said, my team has told me that radiotherapy and immunotherapy is not advised for me due to my severe lung disease (COPD and pulmonary fibrosis). But maybe chemo alone will work well? IDK. Thank you for all the positive wishes, and I also wish you all the best.

    2. There has been such an advancement with this disease with newer treatment options, perhaps consider having a discussion with your team on what clinical trials would be suitable for your situation.


      Here's an article that may help with those conversations as well. Best
      https://lungcancer.net/treatment


  3. Hi . First, let me echo Alisa and Yolanda in saying sorry to hear about both your and your wife's diagnoses. I want to let you know that we have a sister-site for advanced breast cancer at https://advancedbreastcancer.net/. There your wife can find the same level of information and support for that condition as you find here for lung cancer. Wishing both of you the best. Richard (LungCancer.net Team)

    1. Thanks Richard! I'll forward that information to my wife. I appreciate it.

    2. You are very welcome . I hope she finds it helpful. Best, Richard (LungCancer.net Team)

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