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Good news/Not so good news


KarenR

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Hello all,

I have adenocarcinoma, stage III b NSCLC lung cancer, inoperable.

On 7/29, I completed radiation therapy (IMTR) 5 days a week for 6 weeks and chemo treatments once every 3 weeks(3 rounds) of Carboplatin and Pemetrexed.

I had a follow-up CT scan yesterday and the good news is that the radiation substantially shrunk the tumor and the lymph nodes are essentially clear!
The not so good news is they found a new small pleural effusion and a slight increase in lymphangitic carcinomatosis. The radiation oncologist said that it could be more cancer or it could be inflammation. They don’t know for sure.

I am meeting with chemo doc tomorrow and he will either be recommending Imfinzi or Tagrisso. 
I am disappointed/ nervous that there is potentially new growth. 
Has anyone had a similar circumstance?

Best,

Karen


 

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Hi Karen,

You are correct in that Stage IIIb is a challenge to develop a treatment plan for because it’s a fairly rare finding.  While inflammation is very common post radiation anything is possible so it’s important to think about what’s next rather than what if.

If you have the EGFR mutation than in my opinion the only way to go forward is with Tagrisso.  Imfinzi won’t do anything to help. It’s well known now that for lung cancer mutations targeted therapy is far more effective than immunotherapy.  In fact immunotherapy can do more harm than good with mutations.  
 

Try not to be disappointed as this is all part of the process of obtaining an accurate diagnosis and effective treatment plan.  Almost everyone with the EGFR mutation ends up on Tagrisso which is the best path for progression free survival.   

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Michelle is correct. I am also Stage IIIB EGFR/Exon 19 deletion (also inoperable) and had chemo and radiation before starting Tagrisso in March 2020. It took until April 2021 for me to be in remission (NED). I also had a pleural effusion for quite some time. Chest radiation causes all kinds of inflammation that takes months to heal and can be hard to read on a CT scan. 

So if you are EGFR+, Tagrisso is the right targeted therapy for you. Immunotherapy does not work on this mutation, as Michelle notes. Your biomarker test results are essential to plan for your next steps. Let us know what your oncologist says. 

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My bio marker testing came back with EGFR, I believe Exon 19. I was told that I could go either the Imfinzi route or the Tagrisso route. 
Not sure why

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41 minutes ago, Rower Michelle said:

Wow. That really doesn’t make any sense to me at all.  Hopefully you’re treated at one of the cancer centers that specializes in mutations like MGH…

I am at Dana Farber. I’ll ask more questions when I meet with the medical oncologist tomorrow, but that’s what he said before my last chemo treatment and also what the radiation oncologist said today.

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You know, during chemo my oncologist was talking about Imfinzi too. (This was before I became educated.) He may have been thinking of another patient, who knows. Maybe that's your case too. 

Tagrisso is wildly expensive but your oncologist's office can help with an application to Astra Zeneca for financial assistance if your insurance doesn't cover it. 

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  • 2 weeks later...

Hello all,

Thank you all for the information that you provided.  I started the Tagrisso last night. I’m praying that I can tolerate it and that it continues to shrink the tumor.

With many thanks!

Best,

Karen

 

 

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Karen, I can't remember if I told you about the closed LUNGevity Facebook groups you might be interested in:

Tagrisso (osimertinib) Patients & Caregivers Group 

LUNGevity EGFR Group

LUNGevity Targeted Therapies Group 

EGFR Resisters Lung Cancer Patient Group

The members discuss symptoms, side effects, concerns and everything else about our treatment. Lots of tips to manage side effects, and you can search for a particular question. My own advice is to moisturize regularly. For me, side effects are very manageable, especially compared to chemo and radiation. 

Good luck! 

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Hi Karen, 

I hope the Tagrisso works well for you.   Although this might sound like crazy advice, you might want to find an experienced nail technician for pedicures, many of our group members have had ingrown toenails from Tagrisso.   Sometimes pedis can be expensive but it you explain the situation, often times salons would be willing to give you a very nice discount to support lung cancer awareness.    You might also want to line up a dermatologist who has experience with Tagrisso because rashes are also pretty common.    Those were the two main issues of concern from my support group friends.  Other than that, they're living pretty normal lives these days.   Carry on. 

Michelle 

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  • 2 weeks later...

Some of the members on here who opted for early chemo have had amazing results. Some have continued working throughout and not many have had horrendous side effects. Presumably if you started chemo and found it too tough you could call a halt. Perhaps worth checking with the specialist. You can always use one of the cancer apps like Ankr (ankr.us) or chemoweave (chemowave.com) to get information.

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Chinvi's post suggests two websites as sources for information and advice about cancer. In looking them over there is a free component, but that is designed to provide just enough insight to draw you into the information for pay portions of the suggested website. Forum members should know that Lungevity.org provides information tailored for lung cancer survivors that vetted by physician and scientists, and that is free for all. 

Stay the course.

Tom

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