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Anyone have cancer with unknown primary?

Cancer | Last Active: Nov 9 1:19pm | Replies (155)

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@elliwiemers

Hello,
I feel great! I have never had symptoms of my cancer. I workout up to 5 times weekly, pushing myself to remain strong. I eat a healthy diet including 3 fruited and 3 vegetables per day, and limit my sugar intake.
I started with carboplatin, Etoposide, and Atezomizalab for 4 months. genetic testing showed my cancer positive for the HERS2 receptor- apparently a first in large cell poorly differentiated NET. So I started Enhertu. This drug cleared my body and bones in 4 cycles! I remained on it another 6 cycles, then developed lung inflammation. Doctors took me off the drug, I missed a treatment cycle, then resumed with Traztuzamab for a short time. Scans revealed progression again. I underwent radiation of a few areas, then whole brain radiation therapy in May 2022. I began Traztuzamab/carboplatin/Capecitabine, had to drop back to a lower dose due to hand and foot syndrome and GI distress. Not fun! My hands are still recovering from the Capecitabine. When this treatment also failed, I had more radiation and started IpiNivo (Ipilumimab/Nivolumab) in October 22. In January this year doctors decided to rechallenge with Enhertu at a lower dose, which provided some regression but still progression in other areas. A new genetic test and a look back at my first test showed the presence of EGFR, so I started Tagrisso May 19. My next scan is the end of June.
In April I had a PET CT to see if my cancer may have somatistatins, and I do - another miracle in this mixed up cancer. This means Lutathera is an option for me.
I have learned that I must persevere through each of these. I take one therapy as long as I can knowing that gifted scientists and docs develop new treatments all along.
I have hard days, no doubt. 8 treatments in 27 months has been hard to reconcile. So I surrender to my faith.
I offer encouragement to everyone! Elli

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Replies to "Hello, I feel great! I have never had symptoms of my cancer. I workout up to..."

I appreciate your post, @elliwiemers. I do admire your persistence and healthy lifestyle as you have dealt with some difficult health issues. Like you, I have had three surgeries for NETs, but have never had any symptoms. That seems to be true for many of us with NETs.

As you have not mentioned PRRT, I'm guessing that was not a recommended treatment for your type of NETs?

Thanks for sharing your experiences. After all this it is great to hear that you still have your faith.