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Stage 4 diagnosis to N.E.D

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Stage 4 diagnosis to N.E.D

Posted By
linpark
5/11/2020 2:04pm
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Replies: 5

Hello.

My mom diagnosed stage 4 in November 2015 at the age of 50.

She recognized some lumps in her lymphatic glands one day while massaging her neck.

At first, she thought it must be thyroid cancer, but it was melanoma with unknown location of primary focus.

(She got rid of a big pimple in the back of her head ten years ago. The doctors assumed that the pimple was the primary focus)

Now she has been having N.E.D since April 2016. Below is the course of treatment she went through.

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Nov 2015 | She recognized the lumps and diagnosed stage 4. Her first otolaryngologist said it is operable.
He seemed rude and untrustable. (He said literally, "you will die if the operation fails") So my mom moved to another hospital for the second opinion.

Dec 2015 | Her new otolaryngologist said it is inoperable because the tumors are too large and too close to the lungs. She was PD-L1 positive and sent to the hemato-oncology department to try Keytruda.

Dec 2015 | First Keytruda treatment along with Tomotherapy. She felt the lumps became smaller and no more pain in a few days.

Feb 2016 | When her second keytruda treatment and 20 times of Tomotherapy were done, the hematologist-oncologist said "after the third Keytruda, you can opt for surgery". 

Mar 2016 | After the third one, She was sent back to the otolaryngologist.
But he wanted my mom to try Zelboraf for another 4 weeks. Because the operation could be too risky as the tumors are still too close to the lungs.

Apr 2016 | Zelboraf did not work much but she underwent the surgery.
The surgery was successful. When they opened her neck, the tumors were already all dead. What they saw in the scan turned out to be the remains of the dead cancer cells.
Anyway, they removed it all.

Apr-May 2016 | She suffered from chylothorax for 1 month after the surgery. She got lymph node dissection and recovered.

Apr 2016 - May 2020(now) | No evidence of disease.

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I am sorry that my writing is not refined. English is not my native language.

I wanted to share this story here because I was helped and encouraged a lot by stories shared in this forum back in 2015.

Melanoma is not a common type of cancer in South Korea so I reached here for information.

I hope this helps you in some way. Stay safe and healthy.

That is wonderful news!! I am so happy for you and your mom. Thanks for sharing!!! celeste

Seems like an amazing success story and great that your mum was given keytruda back in 2015

good luck with the Covid-19, Korea has been doing an amazing job and hope this will continue

And your English is great too!!!

Anyong gessumnida!!!

Hi Lin!

This is great news!! I'm doing the happy dance here in Southern California for you and your mom!

Peace!
Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, SubqQ2013 IPI, SubQ 2014 PEMBRO, SubQ  2017 resected; Feb 2019 SubQ T-VEC

Stage 3a 2017 NSC VATs; Carboplatin & Pemextred; radiation

Great news and such a relief I am sure! Thank you for sharing your success story and best wishes for many, many years to come.
Melanie

Thank you for sharing her story. It is encouraging.

I have also gone from Stage 4 to NED just recently, and I am really hoping to stay clear. Also unknown primary here. Also Keytruda.