Immunotherapy: How many lung cancer patients are 5 yrs post diagnosis?

Welcome to Mayo Connect @sjohnson60. Congrats on nearly 5 years since your initial diagnosis! I'm sure it hasn't been easy. Any change in treatment is scary. I'm hoping that the Keytruda has been effective for you. Monitoring you with follow ups and scans is a great plan. Did you experience on going side effects from the treatment? If you do have growth in the future, can you be placed back on Keytruda after this break?

I was diagnosed in August of 2019, had a bi-lobectomy in 2020, recurred in 2020 4 months later, did immunochemistry test for PD-L1 pos for 85%. so was put on Keytruda late 2020 have been on it ever since. No recurrence yet but may be stopping treatment due to they do not know if I am getting any benefit from it still. So, I guess one way to find out is to discontinue for a while and follow up every 6 weeks and CT scan or PET/CT every 3 months. I am scared but I have lived this long, thankfully.

I have also joined the lung cancer n egfr resisters group. N am so glad to see stage 4 cancer survivors of 10 years plus many people on tagrisso are carrying on 5 6 or 7 years with Tagrisso. So glad. God bless you all.

also, do astrazeneca website enroll international patients because they ask
for citizenship of USA when i saw that website.

Yes they have... platinum therapy using Pemetrexed combined with cisplatin
after surgery. my 5 weeks of surgery are done and they are starting coming
thursday 4 cycles.

Sanyogita15,
Regarding financial assistance to defray the cost of Tagrisso you can go to the AstraZeneca Tagrisso website and explore the link they have for patient reimbursement plans….hopefully you will qualify.

Regarding your upcoming chemo treatments have they informed you which drugs you will be receiving?

Hi @lls8000 I went to the primary doc yesterday n he suggested chemo 4 cycyles and as i have EGFR L858 mutation to go on tagrisso post that for 3 years citing the Flaura results. Yes, its very expensive in India. I am looking for financial assistance as my insurance can cover it or not i need to know n if so also it would be not more than 7 to 8 months. If there is any international assistance program on tagrisso you know of then please let me know. Thanks a lot for your feedback n the useful links you shared. I am going ahead with chemo as the flaura results were also based on combination therapy where chemo after surgery was given followed by tagrisso. It feels really goid to talk to peers as in India very few lung cancer support groups are there.

Hi @sanyogita15, in the US, treatment plans differ based on the stage of the cancer, I am stage IV, so I went straight to the targeted therapy, and did not have chemo or radiation. I’ll have to take the meds forever, as there is no cure at this stage.
The targeted therapy medications are very expensive. I’m fortunate to have insurance that pays for almost the full cost.
Many people here have been through chemo. Here are links to a couple of past posts that may be helpful:

https://connect.mayoclinic.org/discussion/chemo-before-tagrisso-or-not-need-info-but-where-do-i-start/
And: https://connect.mayoclinic.org/discussion/chemo-experiences/

Hi@lls8000 : So happy to hear that you are in the process of conquering
cancer for last 4 years. More power to you. I had consulted a doc who said
chemo not required and you can go for tagrisso targeted therapy as you have
the EGFR mutation. But in India tagrisso is very expensive and not quite
affordable. But the primary doctor where we did the surgery has suggested
chemo first and later on targeted therapy. We still need to meet him and
talk about targeted this week. The chemo would start only after 1 month of
surgery. So, by last week of this month my chemo will start. Can you throw
some light on your chemo experience? What to expect and how to prepare for
it.

@sanyogita15, I'm glad to hear that your NGS testing came back, and that result can now help to guide your care. I'm not an expert or a medical professional. Combining targeted therapies with chemo and/or radiation seems to be more common now, especially for early stage cancers. There is a risk that the targeted therapy won't be a good match for your specific EGFR mutation, in that case you would likely be having chemo. Be sure to get all of your questions answered from the doctors. It's a difficult decision when they are suggesting such different treatment plans.
Also, remember that the prognosis statistics are not your specific story. Many of us are outliving our initial prognosis. I have the ALK mutation (stage 4), and I just celebrated 4 years.