Newly joined

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Post Reply
kikiek
New User
New User
Posts: 1
Joined: Wed May 03, 2023 3:13 pm

Newly joined

Post by kikiek »

My connection to APOE4 is possibly from melanoma. I was diagnosed this year with a nodular form of melanoma, 9 mm or more deep, macerated, mitosis greater than 10000. I was told it was likely a metastatic melanoma because of the characteristics. PET scan, surgery from elbow to shoulder and wide and deep excision, removal of sentinel node. Everything was clean. No residual found in original site, despite the original shave biopsy being 6 mm deep with residual found all ways. I have been on Keytruda only since no Mets and no nodes involved, but because of the 4B tumor I am still a 2c staging. I am so very happy about this result. I read this could also be a protective aspect of my APOE4 gene, I have 1. Any others with similar experiences? I hope with Keytruda I will avoid a reoccurence.
Last edited by kikiek on Wed May 03, 2023 7:50 pm, edited 1 time in total.
NF52
Support Team
Support Team
Posts: 2772
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: Newly joined

Post by NF52 »

kikiek wrote: Wed May 03, 2023 3:33 pm My connection to APOE4 is possibly from melanoma. I was diagnosed this year with a modular form of melanoma, 9 mm or more deep, macerated, mitosis greater than 10000. I was told it was likely a metastatic melanoma because of the characteristics. PET scan, surgery from elbow to shoulder and wide and deep excision, removal of sentinel node. Everything was clean. No residual found in original site, despite the original shave biopsy being 6 mm deep with residual found all ways. I have been on Keytruda only since no Mets and no nodes involved, but because of the 4B tumor I am still a 2c staging. I am so very happy about this result. I read this could also be a protective aspect of my APOE4 gene, I have 1. Any others with similar experiences? I hope with Keytruda I will avoid a reoccurence.
Welcome, kikiek,

Congratulations on getting through the diagnosis, scans, treatment and recovery from your melanoma. You deserve to be happy! Here's one 2020 source you may have seen with encouraging news: APOE Variant May Protect Against Melanoma Spread

And here's an "inside baseball" description of what they seem to have found--note that your results may be much better given how well your surgery went! For those who are unfamiliar with wonky terms like "progression free survival" used below, it doesn't mean how many people survived to 9 months. It refers to how many people showed no signs of melanoma spreading after a 9-month Phase I trial of safety and effectiveness of a drug targeting T-cells to suppress tumors:
Neoantigens arise from mutations in cancer cells and are important targets of T cell-mediated anti-tumor immunity. Here, we report the first open-label, phase Ib clinical trial of a personalized neoantigen-based vaccine, NEO-PV-01, in combination with PD-1 blockade in patients with advanced melanoma, non-small cell lung cancer, or bladder cancer...]Notably, more melanoma patients with PFS-9 [Progression-free survival to 9 months]had at least one germline copy of the APOE4 genetic variant compared to patients with progression before the 9-month mark (
A Phase Ib Trial of Personalized Neoantigen Therapy Plus Anti-PD-1 in Patients with Advanced Melanoma, Non-small Cell Lung Cancer, or Bladder Cancer

You have something even more important than one copy of ApoE4: a deep well of optimism and happiness. My best wishes for that well to never run dry.

Nancy
4/4 and still an optimist!
User avatar
NataliaReyn
Contributor
Contributor
Posts: 98
Joined: Fri Jan 20, 2023 11:29 am
Location: Colorado
Contact:

Re: Newly joined

Post by NataliaReyn »

kikiek wrote: Wed May 03, 2023 3:33 pm My connection to APOE4 is possibly from melanoma. I was diagnosed this year with a modular form of melanoma, 9 mm or more deep, macerated, mitosis greater than 10000. I was told it was likely a metastatic melanoma because of the characteristics. PET scan, surgery from elbow to shoulder and wide and deep excision, removal of sentinel node. Everything was clean. No residual found in original site, despite the original shave biopsy being 6 mm deep with residual found all ways. I have been on Keytruda only since no Mets and no nodes involved, but because of the 4B tumor I am still a 2c staging. I am so very happy about this result. I read this could also be a protective aspect of my APOE4 gene, I have 1. Any others with similar experiences? I hope with Keytruda I will avoid a reoccurence.
Welcome to our forums, kikiek!

Thank you for sharing this with us and so sorry to hear about your diagnosis. I am sure other members will be able to help you with your question!

As a Support Team Intern I would like to share several tools/resources that you may find helpful since you have recently joined us.

The Primer is a detailed and informative resource written by a practicing M.D. with ApoE4/4. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies.

Some helpful tips to navigate the site include the How-To Guide. It includes topics such as navigating the forum, private messaging, and searching.

If you are interested in learning more about other members check out Our Stories.

Two more tips to improve your experience here:
  • If you want to Search for posts on a specific topic, you can use the text box labeled "Search" right under your user name and enter those specific terms.
  • To be sure a forum member is notified of your post, just click use the large quotation mark icon in the upper right corner of they post.
Again, thank you for joining our site and hopefully you find our community helpful!

Warmly,

Natalia
Functional Medicine Certified Health Coach
Bredesen Protocol Health Coach
User avatar
TCHC
Contributor
Contributor
Posts: 109
Joined: Mon May 02, 2022 6:56 am
Location: UK
Contact:

Re: Newly joined

Post by TCHC »

Hi Kikiek
Great news that you overcame the melanoma.
I wonder if you've read "Eat to Beat Disease" by Dr. William Li? I'm a big fan of the idea that food is medicine.
In it he talks about specific foods that have been clinically trialled to help with specific diseases and in it he does talk about a study on Pacific Oysters for melanoma... and many other things you can do for your immune system to help it find cancers itself.
Obviously you're over yours, but future prevention?
Good luck with your ApoE too!
Lindsey
TCHC - Lindsey Byrne - The Cognitive Health Coach - UK
Functional Medicine Certified Health Coach (FMCHC)
Certified Re:CODE 2.0 Health Coach
Post Reply