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mam12198

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I don’t ask what other med is an option for me. Mainly because I know they are harder to tolerate. Since Kadcyla is working I’ve been told to “ride the wave” and not worry. My doc always has something else to try

Good luck with radiation 

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  • 1 month later...

Update. My targetKadcyla has stopped working after 6 months  I am breathless coughing tired achy. So another biopsy to see if something has changed. Pulmonologist to check me out. Pet scan soon   All the good stuff!  So not a lot of options for me. I refuse Doxetaxol cuz it will make me miserable and there is no end to treatment. So maybe a trial?  or a different chemo. Depends on biopsy

How are you doing?  I hope better than me!  My goal is to make it to summer and the other side of covid so I can see friends and family

Only so much misery I can take!  Pretty unfunctional now

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Lin I’m so sorry to hear this. I was in the hospital because of keytruda. I should stop being miserable about my sciatica, they think it’s an old swollen lymph node pressing against the nerve so they want to radiate the node. It’s making walking hard.

set your goal higher!! Look for a clinical trial as my friend is in one and it’s shrinking her tumors.

 I’m thinking of you and will keep you in my prayers.

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After all my tests my oncologist will decide next steps. There is a trial that focuses on HER2 but if biopsy shows less expression of HER2 now after targeted treatment then I would not be a candidate.   I am in a holding pattern until all results are in

Maybe??? they will find something else to target. Wait and see. 

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LIn- I am so sorry to hear about your setback.  As a planner, I hate the waiting part - waiting for results, waiting for treatment recommendations.  Not sure what will come next.  Holding patterns do not bode well with me to say the least!  I hope you are hanging in there!

We are dealing with missing family right now too, like others, I'm sure.  Not being able to be around our loved ones makes our situations 1000 times harder.  Right now, my mom just wants her family to surround her, but she can't even see her husband who is in an adult family home.  It's tough times, to say the least.  Do know that we understand what you are going through and can empathize.

Take Care,

Steff

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Hi

  Just wanted to stop by and wish you well!  I had my second opinions at Dana Farber and was fortunate that they came up with the same treatment plan as my local center so I was able to have treatment close to home.

  I do hope you'll find a treatment that is very effect for you! 

 Best Wishes!  

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My oncologist decided PET first cuz she’s not sure which tumor would be best to target. Based on that she’ll set up biopsy 

I always liked this group best since there is a lot of positive results and good info. Long time survivors. However I have such a rare driver I always knew my prognosis wasn’t good. I read “the devastating diagnosis” of HER2 amplification had a poor prognosis I think I have one more option then it’s the end of the line. Since there is really no “light at the end of tunnel” I’m making peace with it. I have been living for 18 months with treatment but have NEVER felt good. Just want to be able to see my family!

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On 8/14/2020 at 9:22 AM, Lin wilki said:

Mam.   Ct scan good. Tumors are dying. So I asked my oncologist why am I the only person on all these forums with HER2 amplification?  She just said I’m a unicorn! Anyway she said Kadcyla is working for me so be happy. I’m trying not to think about what’s next - cuz I know it will stop working at some point

My side effects are fatigue , muscle aches and mostly dry mouth. It changed the taste of everything I eat or drink. I find it difficult to live with. Oh well at least I am LIVING!  Right?

I'm sorry for all you are going through.  My marker is Her2 also.  I had Carboplatin, Alimta and Keytruda, after four rounds they took me off the Carboplatin and I had a 50% reduction in main tumor size.  I am a non smoker diagnosed in April this year with  stage IV lung cancer that metastasized to both lungs with miliary nodules in both lungs and my lymph nodes near the main tumor are involved as well.  I am on maintenance of Alimta and Keytruda for now, round 8 is Wednesday.   Scans again soon.  I'm guessing bassed on you having death with this longer you have been though this part and have moved on to a new treatment.  I went to duke to look at one study they suggested but it had horrific side affects.  We have also looked at Enhertu but because I am currently responding I don't think I qualify.  My doctor ain't mentioned the Kadcyla.  Do you have that every 21 days?  

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Yes. Started with immunotherapy and radiation trial. Much progression at 6 months. That’s when I was told I have HER2 amplification Now also I asked about Exon 20. Nope. I found out HER2 is not just one kind! I did Carboplatin Alimta 4 months. Still growth. Then Kadcyla 6 months/here we are more growth. Not that this will be you- depends on what kind of HER2.  I know someone on a HER2 FB that has been on Kadcyla for over 2 years with no problems. I asked about Enhurtu- I think you need Exon 20. Basically I’m very low on options. 
I wish you luck!!   Dig in and fight!

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Lin, my Dr told me yesterday that this last treatment of keytruda/Gemzar was my last option for treatment. I am having a petscan done 11/13 and if that looks bad, then no more but if it looks good they need to scramble and find something.

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Mam. How’s Gemzar. I refused docetaxol so doc said Gemzar less toxic?  Would you say it was any easier?  Just that alone no immunotherapy cuz it doesn’t work for me

Couple of weeks- decision time. My chemo nurse said if they give you an option - take it

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I remember Docetaxel getting harder each treatment. I did 7 treatments with Cyramza a target therapy. Gemzar or Keytruda caused my problems so I can’t tell you. My body handled Docetaxel for a while but not the first treatment of keytruda/Gemzar. I’m guessing Docetaxel is the harder of the two.

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