Anyone out there living with stage 4 lung cancer?

Posted by nursed2075 @nursed2075, Mar 10, 2020

Is anyone living with stg4 lung cancer? How are they doing?

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

Profile picture for Merry, Alumni Mentor @merpreb

@nursed2075- Welcome to Mayo Connect. Yes, we have a lung cancer group. I am the mentor for lung cancer and health. I do have stage 4 lung cancer. Many people in the lung cancer group do. I'm horrible on my cell phone otherwise I'd put the link here. You can access it the same way you found this group.
Why are you interested in stage 4 lung cancer patients? Have you been diagnosed with it?

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Yes, I also have stage 4 lung cancer. I am about to engage a series of radiation therapy, the palliative kind, to reduce the pain in my chest, mainly. I am not afraid of dying; to me this is a transfer of my essence, my spirit/soul, into the realm of eternal life with my Messiah. However, I do want to live on this earth as long as possible, so I will be fighting this disease as much as I can. I am engaging in visioning various elements attacking the cancer cells and eating them, one by one. I would be interested in knowing about other strategies for fighting this cancer.

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Thanks for sharing your story. had no symptoms from my lung cancer. It was found accidentally with a CT scan for kidney stones. I have been on the Tagrisso for two weeks and so far so good. Since my breast cancer is triple negative and as of the sonogram not in my lymph nodes. I will probably opt for a mastectomy. I meet with doctors next Wednesday and figure out the plan andwill get the BRCA test.

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Profile picture for marydel @marydel

Thanks. I realize this is group is for lung cancer but since I have both like you can you share the treatment you had for your breast? Unfortunately mine is triple negative and not responsive to ER and as of few weeks ago had not spread to lymph nodes. The lung oncologist and breast surgeon met yesterday afternoon to discuss a plan of action.

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Hi @marydel, My breast cancer is invasive lobular carcinoma, completely separate from the lung cancer which is an adenocarcinoma. Mine is strongly estrogen and progestogen positive (90+%), HER2 negative. I don't have the BRCA genes. I did have a single mastectomy in November '24, without reconstruction, and the removal of 5 lymph nodes. Considering the lung cancer diagnosis and my fierce independent streak, I wanted the simplest surgical option so I could get back to living my fairly active life. I understand that everyone has their own reasons for making the decisions that they do, it's a very personal choice. My post-surgical pathology showed a 3 cm tumor, with a low chance for recurrence, and two lymph nodes with micro-metastases. I started zoladex injections and one of the aromatase inhibitors (AI, exemestane) to remove the estrogen from my body. I'm fairly new with the AI, and I continue to work through some of the side effects. Hoping that some of those calm down soon.
I'm glad your lung onc and breast surgeon are communicating and developing a plan. It's important to have input from both sides. I'll be interested to see what they think. Were you noticing any side effects from the lung? If yes, has the Tagrisso helped? When do you have your next follow up appointment?

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Profile picture for Lisa, Volunteer Mentor @lls8000

Hi @marydel , Welcome to Mayo Connect. I'm sorry that you are having to face both cancers at the same time. I'm sure it's a lot to take in and process.
Each of our cancers are different, and the statistics are helpful, but they aren't YOU. There are certainly people that have long term success with only Tagrisso, longer than the median number of months shown in the studies.
Tagrisso alone was the original plan when the med was developed, but the FLAURA2 study looked at adding chemo to Tagrisso, with encouraging results. In just 2024 the FDA approved the combination of Tagrisso and chemo for advanced NSCLC. Because that was fairly recent there are fewer stories from people on the combination.
One of our valued members, Matthew @flusshund, has been taking Tagrisso for nearly five years. You can read some of his story here: https://connect.mayoclinic.org/comment/1303814/.

The second cancer certainly makes things complicated. I have stage 4 lung cancer and had surgery for 1B breast cancer late last year. The breast cancer treatment may help make your decision about the chemo. Do you have an oncologist that will help to coordinate the treatments for both cancers?

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Thanks. I realize this is group is for lung cancer but since I have both like you can you share the treatment you had for your breast? Unfortunately mine is triple negative and not responsive to ER and as of few weeks ago had not spread to lymph nodes. The lung oncologist and breast surgeon met yesterday afternoon to discuss a plan of action.

REPLY
Profile picture for marydel @marydel

I have recently been diagnosed with Stage 4 non small cell lung cancer with EGRF AND AXON 19. It’s stage 4 because it has spread just outside the right lung. I also have a lump in my breast which is separate. Yes 2 separate cancers. As I wait for a treatment decision on my breast.. I have just started Tagrisso. Chemo is also recommended for my lung.
My questions are: has anyone had long term success on Tagrisso without chemo? Or is the chemo necessary? I will probably have to decide by mid June
Thanks

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Hi @marydel , Welcome to Mayo Connect. I'm sorry that you are having to face both cancers at the same time. I'm sure it's a lot to take in and process.
Each of our cancers are different, and the statistics are helpful, but they aren't YOU. There are certainly people that have long term success with only Tagrisso, longer than the median number of months shown in the studies.
Tagrisso alone was the original plan when the med was developed, but the FLAURA2 study looked at adding chemo to Tagrisso, with encouraging results. In just 2024 the FDA approved the combination of Tagrisso and chemo for advanced NSCLC. Because that was fairly recent there are fewer stories from people on the combination.
One of our valued members, Matthew @flusshund, has been taking Tagrisso for nearly five years. You can read some of his story here: https://connect.mayoclinic.org/comment/1303814/.

The second cancer certainly makes things complicated. I have stage 4 lung cancer and had surgery for 1B breast cancer late last year. The breast cancer treatment may help make your decision about the chemo. Do you have an oncologist that will help to coordinate the treatments for both cancers?

REPLY
Profile picture for marydel @marydel

For breast cancer my doctor is meeting with the hospital “tumor board” on Tuesday since the breast impacted is on the same side as lung. Will know late next week.

My oncologist said there have been studies that Tagrisso plus chemo have better outcomes.

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I hope it works well for you.

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Profile picture for denzie @denzie

Tagrisso is usually a singular treatment for lung cancer. Chemo is given when there is some progression but Tagrisso is still working on most of the lesions.

How will they be treating the breast cancer?

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For breast cancer my doctor is meeting with the hospital “tumor board” on Tuesday since the breast impacted is on the same side as lung. Will know late next week.

My oncologist said there have been studies that Tagrisso plus chemo have better outcomes.

REPLY

Tagrisso is usually a singular treatment for lung cancer. Chemo is given when there is some progression but Tagrisso is still working on most of the lesions.

How will they be treating the breast cancer?

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I have recently been diagnosed with Stage 4 non small cell lung cancer with EGRF AND AXON 19. It’s stage 4 because it has spread just outside the right lung. I also have a lump in my breast which is separate. Yes 2 separate cancers. As I wait for a treatment decision on my breast.. I have just started Tagrisso. Chemo is also recommended for my lung.
My questions are: has anyone had long term success on Tagrisso without chemo? Or is the chemo necessary? I will probably have to decide by mid June
Thanks

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Profile picture for richcolleen @richcolleen

I to had no appetite for 10 days after chemo but gradually ate to get strength back. Ate foods with lots of protein. Helped me get thru the 10 days recovery and than would go back for more. Did that for 7 months and said no more as that was not living. Was put on Keytruda for 2 years. Only thing I have trouble eating is leafy greens.🥲

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I drank high calorie protien shakes just keep trying to keep your calories up. Best of luck

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