Dear @jaynus55
I am sorry for the difficulties you have experienced in your treatment process so far. It sounds as though you have been given a number of different types of treatment without much success.
This is what I would do—contact MD Anderson in Houston for a review of your tumour pathology and overview of the treatments given and their results. Docs at MD Anderson will work with your team to adjust your treatment or offer you alternatives that may not be available elsewhere. The good news is that they work quickly and with minimal delay.
You have my best wishes.

I’m so sorry you’re going through this. I agree with getting another opinion. Besides Mayo Clinic, consider M D Anderson, Cleveland Clinic, Memorial Sloan-Kettering, Dana-Farber, Johns Hopkins, and Stanford. Thankfully, they can probably “see” you online, saving you travel expenses.
Another source of information is the National Comprehensive Cancer Network guidelines: https://www.nccn.org/guidelines/guidelines-detail
Hugs

@jaynus55. I understand why the spike in your CA-125 is frightening and alarming. Frankly, I would feel the same. Anxiety causes us (me anyway) to not be able to see things objectively and so it’s difficult to put that CA-125 number in anything other than alarming. Since you are getting regular PET scans I recall that your doctors and other members in our Gynecological Cancers support group said that a PET scan is far more reliable. So, it’s good that you get these PET scans which reveal more reliable information as well as location of activity.

It sounds like your cancer care team is responsive and working with you. What do you think about getting another opinion at one of the locations suggested by @lathomasmd? Since your doctors suggested clinical trials at UVA (University of Virginia) then asking for a referral to a comprehensive cancer care center is a good idea. What do you think?

Two things to consider when deciding whether or not to get a blood transfusion: if your hemoglobin is lower than 7, for a few weeks or more, you could have a heart attack. Or if you had a serious injury with bleeding, you would bleed out much faster than someone with a normal blood count. A transfusion can be necessary even when you don’t feel terribly fatigued. Just sayin’.

Dear @jaynus55 ,
In my opinion, the surgeries might have caused your CA125 levels to spike. Your body may need time to recover and rejuvenate. Consider incorporating natural remedies to support your healing:

- Fresh celery and parsley juice
- Cucumber juice from a juicing bar
- Chia seeds and flaxseeds in Greek yogurt, cream of wheat, or oatmeal
- Daily intake of organic:
- Avocado
- Watermelon
- Blueberries
- Red peppers
- Strawberries
- Cabbage
- Baby Spinach
- Bone broth when feeling tired or not hungry
- Decaf Lemon ginger tea
- Decaf green tea

Definitely give yourself time to heal and allow your blood work to improve. Three of the most understated nutrients in our fight against cancer are magnesium, potassium, and Vitamin D3, as well as Amino Acids.

May God bless you with strength and courage in your fight against cancer. You're an inspiration to me and many others.

Wishing you a happy and blessed 91st birthday soon!

Warm regards,
CC

N.B. This is not medical advice. Consult a healthcare professional before making dietary changes.

Dear @jaynus55 -

Questions to ask your doctors:

1. What is the intensity and location of the PET scan activity?
2. Are there any noticeable abnormalities or lesions?
3. How does the PET scan correlate with CA-125 levels?
4. What are the next steps in diagnosis and treatment? Can you use Keytruda alone when you're fit enough to do so?

My Oncologist said PET scans can sometimes produce false-positive results, showing abnormal activity in areas where there is no cancer. This can occur due to:

1. Inflammation or infection
2. Benign conditions (e.g., endometriosis, fibroids)
3. Recent surgery or radiation therapy
4. Certain medications (e.g., steroids, blood pressure medications)

False-positive results can lead to:

1. Unnecessary further testing or procedures
2. Anxiety and stress
3. Delayed or inappropriate treatment

In your case, the Oncologist might be cautious due to:

1. The high CA-125 level, which could indicate ovarian cancer
2. The potential for false-positive results on the PET scan

To minimize false positives, your Oncologist might recommend:

1. Alternative imaging tests (e.g., MRI, CT scan with contrast)
2. Biopsy or tissue sampling for definitive diagnosis
3. Close monitoring of CA-125 levels and symptoms
4. Consideration of other diagnostic tools (e.g., ultrasound, endoscopy)

Please find another source from MD Anderson:
https://www.mdanderson.org/content/dam/mdanderson/documents/for-physicians/algorithms/cancer-treatment/ca-treatment-endometrial-web-algorithm.pdf
Warmest regards,
CC

@jaynus55 In your initial post you indicated that you plan to see your oncologist this week. Did that appointment happens as planned and if yes, do you have any new information about your treatment plan?