Anyone had Immunotherapy or Maintainance Therapy when HRD Negative?

@doshi You are a compassionate and loving husband who comes here for support for yourself, for your wife, and your two young daughters. While I am a cancer survivor for endometrial cancer (endometrioid adenocarcinoma, Grade 1, Stage 1; recurrence two years later that was treated with radiation therapy) I did not have chemotherapy. I was 67-years-old at first diagnosis and post-menopausal. So while the diagnosis was a shock to me I did not have young children at home at the time.

Do you know the type of ovarian/endometrial cancer? I’m thinking you have already done a lot of research and reading but just in case I have provided you with some links.

American Cancer Society:
Endometrial Cancer:

— https://www.cancer.org/cancer/types/endometrial-cancer.html

Ovarian Cancer:

— https://www.cancer.org/cancer/types/ovarian-cancer/about.html

There are other women in our support group @mommacandy @val64 @gynosaur42 who have been diagnosed and treated for ovarian and endometrial cancers.

Are you and your wife feeling supported by her cancer care team? Are you interested in another medical opinion?

Have they tested the tumors for mutations/HRD, or did they just do a germline test on her blood? If they think it might be endometrial in origin, the tumor should have at least been tested for MMR deficiency (by testing MLH1, PMS2, MSH2, and MSH6) and for p53. I don't know offhand what the routine genetic tests for ovarian tumors are.

If the tumor is not MMR deficient (above genes, except p53, all normal by imunohistochemistry-IHC), you should lobby for testing the tumor for mutations in the POLE gene, if they haven't already, either as part of a large sequencing panel, or as a single gene test. (I ended up paying $450 for a single gene test from Stanford out of my pocket two years ago.) You really need to watch your wallet if you want a sequencing panel and insurance won't pay. At my hospital, the list price for this test was $14,500 two years ago, but I got it cheaper, paying $700 out of pocket, by contacting the lab ahead of time. It's conceivable that insurance would pay in a case such as your wife, since doing a sequencing panel on the tumor might also give some insight into its origins.

Tumors that are MMR deficient or have POLE mutations are very sensitive to immunotherapy.

@naturegirl5 Thanks for your reply and kindness.
Regarding type of Ovarian/Endometrial Cancer, no sorry but we have not been advised yet. To be honest according to Oncologiest they are even unable to findout which one is primary (Ovarian or Endometrial).

I would need some guidance in that area or name of test which can findout exact type, any chance you can help?

@val64 Firts of all thank you for such a detailed information.
In terms of testing, they have tested done blood germline test and all these Panel details and gene(s) tested:
Ovarian_cancer_v2_R207_HG38 - BRCA1, BRCA2, BRIP1, EPCAM, MLH1, MSH2, MSH6, PALB2, RAD51C, RAD51D
Found to be negative.
Further Molecular Diagnostic- Solid Tumour - sample indicates >70% tumour nuclei and high cellularity.
Also HRD status negavive.

Thanks for your advise above, I shall request for tumor for mutations in the POLE gene. Is there any other test recommended to determine exact type and origin of cancer?

@doshi None of us here on Mayo Clinic Connect are medical professionals so I cannot provide you with medical advice. There are few things I do know about ovarian/endometrial cancer and one is that endometrial cancer cells can be found in the ovaries.

Here is what I would do. I would read the pathology report. Do you have a copy of the pathology report? This would be the report that your wife’s oncologist received after her surgery. After her surgery all of the tissue was removed it was all was sent to a lab and then a pathologist (a medical doctor) examined tissue under a microscope. The pathologist then provides a diagnosis and sends the report to the oncologist. This is how you know the stage of the cancer, Grade 3, and that it was found in the ovary, uterus, and lymph nodes. The pathologist wrote all of this in the report.

If you have that report available it will state the kind/type of cancer. That information will be helpful to others here on Mayo Clinic Connect who have similar diagnoses as your wife and can tell you the tests and treatments that were recommended to them.

Please do not attach the pathology report to your posts as it will contain personal information. We are very careful on Mayo Clinic Connect to protect confidentiality.

Does this help?

Thank you so much for sharing knowledge, as I said this is completely new world to be, my knoledge is very limited.
I have now looked at report and found that its Endometrioid carcinoma. (I believe this is the type?)
Also found below details of spread in lymph node. (all other are is Figo Grade 1)

The lymph node(s) with metastatic carcinoma solid growth pattern (FIGO grade 3).
The tumour is positive for AE1/AE3, CK7, CD10 and PAX8. p16 staining is negative
(mosaic pattern) and p53 is wild type. ER and PR are both weak and focal
positive (ER - 4/8, PR - 3/8).
The tumour is negative for CK20, CDX2, TTF1, GATA3, p63, Napsin A, Inhibin,
Calretinin, CD30, OCT3/4, SALL4 and CD117. The tumour is MMR proficient.
Tumour content: E1, E2, E3 = 70%

Also another report which I mentioned earlier confirm she is HRD negative.

Would like to know if someone has been in same boat and what would be best course of treatment please?

Dear @doshi

I admire the way you're looking out for your wife. She needs you now more than ever.

Below is my response to your questions bared typing my personal experience and research:
For HRD-negative endometrial cancer, maintenance treatment may not be necessary unless recommended by the oncologist. Immunotherapy options are available, particularly for those with mismatch repair deficiency (dMMR) or microsatellite instability (MSI-H). Keytruda aka Pembrolizumab has shown promising results, with a 52-57% objective response rate in clinical trials for these folks.

If considering Keytruda, discuss cost concerns with the oncologist or healthcare provider. They may offer guidance on managing expenses or exploring alternative options.

To support your wife's recovery, consider:
- Cutting out sugar and focusing on colorful, nutrient-rich foods
- Pressed green juices or smoothies and Mediterranean-style salads with mixed vegetables
- Eating something like her favorite breakfast before each round of chemo, and soup, salad, or a tuna sandwich on pita afterward is helpful because she might not feel like eating much for the next 5 days or so after each round of chemo
- Drinking water every hour during waking hours to flush out toxins

Don't forget to:
- Prioritize healthy meals, such as those including yogurt topped with chai seeds, flax seeds, and women's myKind vitamins
- Pay close attention to blood work before each treatment to ensure organs, white and red blood cells, and thyroid are okay enough for treatment and to determine if you wife's diet needs to be adjusted (folace, magnesium, potassium, vitamin B12, vitamin D are important)
Take care of yourself during this challenging time
- Pray for a healthy outcome and stay positive. Your wife's body will be going through lots of changes, so please encourage her with soft affection and kindness. Go to every infusion appointment with her. Let her interact with the doctor on her own (list/discuss symtoms) and only advocate if she forgets to mention something or needs you to affirm something.

My personal Experience:
I was diagnosed with stage IVB, Grade 2 endometrial cancer and underwent six rounds of chemo with Keytruda aka Pembrolizumab and seven rounds of Keytruda alone for maintenance because I was dMMR. Your wife is pMMR, but there might be other viable options for maintenance, but you'll have to consult with your oncologist and you may be getting ahead a little.

Due to toxicity, high blood pressure, and glucose levels, I stopped Keytruda after seven out of the 14 rounds prescribed. I added airborne to my water 10 days out of every month to keep my immunity due to dying cells. It's been four months since my last maintenance treatment, and I'm awaiting the results of my CT scan this week.
My CA 125 marker is within normal range since round three of chemo.

Here are ways to support cell performance or regeneration during chemo:

Nutrition;
1. Eat foods rich in antioxidants: berries, leafy greens, and other fruits and vegetables.
2. Include healthy fats: avocado, nuts, olive oil.
3. Consume omega-3 fatty acids: salmon, walnuts.
4. Eat foods high in CoQ10: organ meats, fatty fish.

Lifestyle;
1. exercise: walking
2. Manage stress: meditation, yoga.
3. Get enough sleep (7-9 hours).
4. Limit exposure to toxins.

Foods to Avoid:
1. Processed meats
2. Refined sugars
3. Fried foods
4. Foods high in saturated fats

Additional Tips;
1. Stay hydrated.
2. Limit alcohol consumption.
3. Quit smoking.
4. Consult a healthcare professional.

Remember, consult a healthcare professional before adding supplements or making significant changes.

References:
*** Mayo Clinic - Mitochondrial function

Love (for ourselves and others) suffers long and is kind. 😇

Warm regards!

My heart goes out to you and your family I am so sorry you are going thru this journey. I would have them do a next generation sequencing test on the tumor if it hasn't already been done to check for these mutations:

PDL-1 if positive an immunotherapy (Keytruda) shows promise
FRA folic acid test - if positive Elahere is an option

Wow This is great, Thank you so much for detailed information. This is very helpfull.
I will make list and reminders based on this and will start following.
I wish you best luch with yout CT Scan, please do let us know how it goes.

Thanks @tbkomparda, we have appointment with Oncologiest next week, I have made note of these tests and will request them to carry out.