Immunotherapy with Clear Cell Carcinoma- Endometrial

I wish oncologists were trained to tell new cancer patients, "this is the best diet", "these supplements should be taken", "this is the recommended exercise" --- the whole picture. My new oncologist did tell me not to take herbal supplements during Immunotherapy. @ccwill , if something doesn't make sense and you're not getting answers, go get second opinions until your questions are answered. Wishing you the best.

Yes, @jodimj I agree. The drugs might vary and patient response might differ, but the benefits derived from the healing properties of food and nutrition are consistent and long lasting.

Hello @paula21, Your feedback is so very much appreciated. Hope you're feeling well. You were at a great CA 125 marker level as well. I think, stress, hormones, pain and even inflammation could cause it to rise.
Initially, surgery (in April 2023) removed 98% of my endomentrial cancer tumor, but it metastasized, resulting in the advanced stage IVB. I'm was deemed a good dMMR candidate for Keytruda Carboplatin and Paclitaxel, which I just completed a week ago (September 2023), six cycles, every three weeks; although, they kept reducing the Paclitaxel after the second cycle due to neuropathy symptoms. The next step for me is the 400mg of Keytruda every six weeks for a year. Since the drug was only approved in March 2023 for use in endomentrial cancer patients, I was hoing to find more patients who are on Keytruda alone for up to the two years, as recommended by the FDA, but there's not much information out there, and the little that I have found from patients was negative and/or outdated. That being said may you continue to eat well enough to stay healthy and less dependent on drugs to do, if necessary. Calcium, Vit B (complex) taken with Iron, Vitamin C etc. seem to be critical, so I will take your advice and start a consult with a nutritionist. (I had two rounds of iron infusion added the last two chemo cycles to aid anemia.) I currently take Be Kind Women's Supplement and drink a pack Airborne once a month. Hoping to find more responses from patients who are on Keytruda solely as a maintenance drug so all of us on the same plight to benefit. In the meantime, this forum has been extremely helpful! Stay well! Much love! 💞

Diet or food source for blood health would be a great topic. I know the vitamin Bs are critical!

Hi! I think your concerns are valid. My Keytruda is 200 mg every 3 weeks and I'm on Lenvima 10 mg. My CA 125 was between 4&6 for over 7 months, but I was given PET scans which showed metastasis in two new areas. I was off Keytruda for 2 months due to skin rashes and now my CA 125 shot up to 35!

I strongly recommend that you get a second opinion. You've reached such an important goal.

Are you on any special diet with foods known to prevent cancer?

Hope this helps.

@paula21 Greetings! Since I'm about to start Keytruda, alone, as a maintenance drug, could you kindly provide your feedback. So you infuse 400mg every six weeks? My CA 125 is 6 (that is a normal person) and my last CT scan did not show any cells. Therfore, I am concerned about continuing on a drug that may have adverse long-term effects on my body and wellbeing, compared to where I stand now. Thank you in advance for your kind response.

@paula21 I’m doing good. I keep looking over my shoulder for another cancer recurrence or a new primary cancer however as time progresses (2 years since the recurrence) I’m doing less of that.

How you feeling today?

Glad you have assembled a team you can go to when needed. My team is mostly for handling side effects so I can keep going with my treatment.

How are you feeling?

This is a great approach. Like you I’ve assembled a team although I’m not in active treatment right now. These including my primary care physician, my nurse practitioner for my cancer surveillance appointments, integrative medicine physician, massage therapist, and nutritionist. I recently added an endocrinologist because I had a fracture due to radiation therapy and so need to focus on bone health more intensively.

My integrative medicine doctor helps me put everything together. She’s an oncologist now working in integrative medicine so she is very helpful to me.

I'm so excited to hear of new approaches coming out of clinical trials! I am following the advice of my oncologist, but I also have a whole care team for helping me:

A cancer nutritionist, my primary doctor, a dermatologist, a chiropractor. I'm working on adding a physical therapist and allergy specialist as I am prone to skin rashes from Keytruda.