Stage 3B on Tagrisso?

[gem]

I would like to request for help and support for my father who’s just been recently diagnosed with Non-small Cell Lung Cancer. We’ve been told we are at Stage 3B and has been prescribed with Tagrisso. We’re already one month in with this treatment and we are scheduled to have another PET scan on Jan 7, 2021 and meet with our medical oncologist on Jan 11, 2021.

I have tried to read and absorb as much as I can regarding my father’s disease and found that given that my father is at stage 3b, I was wondering if we should have pursued surgery or a more aggressive treatment like chemo or radiation for him. I am also trying to understand because on his first PET scan besides his main tumor on right lung and some lymph node involvement, it also indicated the following:

“Stable nodular right pleural thickening with hypermetabolic activity, suggestive of metastasis.”

He does not have mets anywhere else besides what is in his right lung, lymph nodes and this pleural thickening. I have read and read a lot and most with pleural involvement say it’s Stage 4. But we’ve seen 2 oncologists and both did say Stage 3B.

I guess what I think now is if we’re really stage 3B, we should be more aggressive with treatments if we can tolerate those. But I’m not really sure if we are staged “correctly”. I was advised to seek 3rd opinion from US (we’re based in the Philippines), I would love to do that but I’ve seen costs for remote consultation in Dana Farber and it’s USD 2000 - that’s equivalent to 1 month of Tagrisso here. It may seem much less than 16k cost of Tagrisso in US but taking into account our currency value, 2K USD is already a lot of money. So, I’m not sure if 3rd opinion from US can be an option for us. I’ve also read some studies wherein those on Tagrisso also receive local therapy. I’m not sure if this is an option we can pursue given that we’ve already started Tagrisso. 

I am just so overwhelmed and all I really want so badly now is to get the best treatment option for my father so we’ll have him for a long long time or better, he gets the best chance for remission or even cure. 

I’m not really sure what my question here is but if you have the same experience, and can give us much needed advice on next steps, or what to ask our oncologist next week with our 2nd PET scan results, that would be great. 

Thank you so much!

 

[GaryG]

Hi Gem: Welcome! I was diagnosed with IIIB  stage NLCS and was told that surgery and Radiology are not a possibility.  I am treated with Chemo and immunotherapy while your dad is treated with Tagrisso because he probably has a mutations  in a gene called EGFR. 

There are few posts here written on Tagrisso you might want to read. Not all cancer patients qualify for surgery or radiation because that depends on the size and location of the cancer. Many of the drugs given today are quite effective and 57% of Tagrisso of treated patients experienced a response. My lung cancer become small enough to be treated with radiation but my oncologist prefers to continue with Chemo/Immunotherapy because they are working.

I would rather have "Effective" treatment that gives results rather than "aggressive"  treatment that doesn't.  It seems like your health providers are on the right track for detecting the mutation and choosing the right medication. So I will not be concerned with staging at this time and concentrate instead on the results of the scans. Should the cancer metastasis outside the lung, then the oncologists will pursue a path to deal with it.  Many people survive stage 4 also.

As cancer patients the first thing we learn is to be patient. We have to overcome our fears, anxiety and replace them with hope and anticipation. It takes support to chart that course and remain on it for a while. Thus we visit here often, look for help, ask questions and share our experiences so please join us often and talk about your father's progress. 

I also suggest you stay away from Google. Most of what you read there is outdated and inadequate. You might instead join Lungevity face book page.

I wish you the best

GaryG.

   

[gem]

Hello Gary! You are right, my dad tested positive for EGFR, hence, he is taking TKI. The tumor is in his right lung 6.7cm. The oncologist said surgery may not be an option because of pleural involvement. Thank you so much for your words of encouragement. It’s true that we need effective treatment, thanks for reminding me that. I guess I am truly overwhelmed with all this new information and I am known not to be a patient person. I have joined several Facebook pages related to Lungevity Org, EGFR Resisters and Tagrisso  patients. The wealth of information is astounding, I still need time to process everything and I am very fearful recently. I’m so glad to have reached out here and receive support such as yours. 

How are you doing now with chemo and immunotherapy and when were you diagnosed? 

Again, thank you for your reply, it has alleviated some of my fears and concerns.

[GaryG]

Hi Gem: I was diagnosed in May/2020  and my cancer was even larger than you dad's. My oncologist is very encouraged by the results so far and I am grateful. It is very normal to be overwhelmed but you seem to be on the right track so give it time. Visit here often because you keep abreast with the latest and you hear what really matters directly from cancer patients. Good luck and keep up the good work.