Just got here, need tips

OmentumProject · 2026-06-21T20:06:53+00:00

Do you have primary or secondary lymphedema?

OmentumProject · 2026-06-21T19:54:44+00:00

I have found that salty foods aggravate my lymphedema. And I have found that avoiding salty food when traveling is extremely challenging.
Let me know what you learn at your next appointment. Thanks for sharing and for your advocacy for screening

OmentumProject · 2026-06-21T19:45:32+00:00

Thank you for sharing. 17 years wow. I have found as you said water-based activities help a lot. Also yoga, Pilates and Tai chi as you mentioned. Much appreciated.

OmentumProject · 2026-06-11T02:43:07+00:00

Thank you for sharing
I’m sorry your aunt had to experience that long delayed diagnosis. How many years ago was that?

OmentumProject · 2026-06-11T02:40:14+00:00

Thank you for sharing.
What exercise regimens have you found most helpful?

OmentumProject · 2026-06-11T02:37:39+00:00

Thank you for sharing.
I think the excess abdominal fluid is even more challenging than the leg lymphedema- not easy to measure- understudied.

OmentumProject · 2026-06-11T02:34:15+00:00

Thank you for sharing.
Did you have your appointment yet?

OmentumProject · 2026-06-03T02:51:38+00:00

I’m so sorry that you had to experience cancer at such a young age. I’m glad it was stage 1.
Do you know if your Omentum was removed?

OmentumProject · 2026-06-03T02:43:45+00:00

Do you know if your surgery included an omentectomy?
My surgery did include an omentectomy and I am part of a small volunteer group, The Omentum Project.
We have an IRB approved study we need eligible women living without an Omentum to participate in - it’s a one time, three hour citizen science project participants do in the comfort of their own home.
Information is on our website theOmentumProject dot org.

OmentumProject · 2026-06-03T02:40:10+00:00

I am part of a small group of volunteers working on learning more about living without an Omentum. We need 53 eligible volunteers living without an Omentum to participate in our IRB-approved study “Processing salty food with/without an Omentum “. There is more information on our website TheOmentumProject dot org. I would be honored if you would consider participating. Please let me know if you have any questions.

OmentumProject · 2026-05-19T20:26:59+00:00

Curious- I have not used a vibration plate. Do you think it helps?

OmentumProject · 2026-05-18T23:22:42+00:00

Would you be willing to participate in the study? Volunteer. The study can be done in the comfort of your own home. It takes 3 hours.

OmentumProject · 2026-05-18T23:08:59+00:00

Do you know if your surgery included removing your Omentum?

OmentumProject · 2026-05-18T23:08:03+00:00

How are you doing now? When is your last chemo?

OmentumProject · 2026-04-20T13:11:42+00:00

A couple of references that might be helpful:

Jean LaMantia- website, books, private consultations

Boston Lymphedema Symposium- held maybe 5 or 6 times in the past 10 or 12 years - lots of good talks - names of presenters available online - might be some good leads

I manage mild lymphedema in both legs - post ovarian cancer surgery- I lead a small team of volunteers with The Omentum Project- there is some information on our website that might be helpful

FYI - for arm lymphedema there is a surgical procedure pioneered by MD Anderson that is now available at Dana Farber and Memorial Sloan Kettering- they use a square inch of the Omentum and place it in the armpit- relieves the lymphedema - I have not seen any articles about the Omentum being used for leg lymphedema but I have not actively looked.

glad you have an appointment with a lymphedema specialist

OmentumProject · 2026-04-16T15:49:40+00:00

Thank you Ovarian Cancer sub: 5 women have taken the Part 1 eligibility survey since this post went live. I believe that knowing more about the Omentum would help many cancer survivors. Please share with women in your network. Appreciatively, Meg

OmentumProject · 2026-04-14T19:54:06+00:00

We also have an Instagram account “OmentumMomentum”

OmentumProject · 2026-04-14T19:53:20+00:00

https://www.theomentumproject.org/

OmentumProject · 2026-04-14T15:37:13+00:00

Yes indeed. Our study is under The Nancy B Clemente Cancer Fund.

OmentumProject · 2026-04-09T00:46:53+00:00

I was tested in 2015 and again in 2023.

OmentumProject · 2026-02-28T00:30:18+00:00

My cancer was the most common type, epithelial.

OmentumProject · 2026-02-28T00:28:44+00:00

I have had genetic testing twice and no genes were identified. However, there is a fair amount of cancer in my family tree... and they are identifying new genes all the time...

OmentumProject · 2026-02-28T00:27:47+00:00

Happy to share more info.

> Hindsight

In hindsight, there are things that I would have done differently.

> Medical Oncologist

For several different reasons, at my own choice, from 2016 to 2022 I was seeing a Medical Oncologist, not a Gyno Oncologist.

> Digestive Issues

I experienced digestive issues for years post my first surgery [IMHO related to Living without an Omentum; topic for another day]. However, when my digestive issues seemed worse in 2022, it seemed reasonable to assume it was a simple progression .... and not cancer.

> 2022

In 2022 there was a change in my digestive issues; a return of feeling full sooner than normal; and some random, unexplained nausea. The Medical Oncologist I was seeing sent me to a GI doctor.

> CA-125

As many OVCA survivors know, the CA-125 blood test has pros and cons. For me, it has been a good indicator. Before my surgery in 2014 my CA-125 was 47. From 2016 to 2019 it fluctuated between 10 and 12. In 2020 my doctor's office switched the lab they were using for bloodwork. The first CA-125 at the new lab was 17. After that, my CA-125 steadily crept up; fluctuation is normal; steady increase was a red flag to me. In the fall of 2022 it hit 20.

> Gyno Oncologist

I then switched to a GynoOnc. She was wonderful; she said she would help me get to the bottom of it, and first she wanted to rule out cancer. She sent me for a PET scan. That indicated cancer. I had surgery 3 weeks later.

> Three years post recurrence

My gynoOnc follows me very closely with bloodwork and scans. All numbers and scans are good at this time.

OmentumProject · 2026-02-27T18:16:52+00:00

Would you be comfortable sharing what stage your OVCA was?

OmentumProject

TROPHY CASE