1. < Gynecologic Cancers

Anyone had Immunotherapy or Maintainance Therapy when HRD Negative?

Posted by doshi @doshi, Nov 19 4:35am

I’m reaching out to connect with anyone who may have experience with a similar cancer diagnosis or treatment journey, as my wife has recently been diagnosed with Stage IIC Ovarian/Endometrial Cancer.
The doctors were unable to definitively confirm whether the uterus or ovary is the primary site of the cancer. We learned about the diagnosis after my wife underwent surgery to remove her uterus, both ovaries, fallopian tubes, and a lymph node from her right pelvis. Unfortunately, all of the tissue samples came back positive for cancer, and the lymph node was classified as Grade 3.

This has been an incredibly difficult time for us, especially since my wife is only 41 years old, and we have two young daughters, aged 10 and 7. Following her surgery, she was offered six rounds of chemotherapy and radiation therapy afterward. We’ve just completed the second round of chemotherapy, and she is managing okay, though she’s experiencing some side effects.
Last week, we received the results from a germline test, which showed that she is HRD negative, as well as negative for BRCA1/2 and other mutations.
Given this, I’m reaching out to ask if anyone has encountered a similar case and whether you might have suggestions for any treatment after or along with chemo, as immunotherapy or other approaches, that have shown promise. Any insights, advice, or personal experiences would be incredibly appreciated as we continue to navigate this challenging journey.

Thank you so much for your time and support.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

tbkomparda | @tbkomparda | Nov 20 10:38am
In reply to @doshi "Thanks @tbkomparda, we have appointment with Oncologiest next week, I have made note of these tests..." + (show)
@doshi

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

Jump to this post

Your very welcome I hope she tests positive for either one especially the PDL-1 for immunotherapy if I may ask what type of Ovarian Cancer does she have? High Grade, Low Grade

REPLY
1 reply
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Nov 20 10:55am
In reply to @doshi "Thank you so much for sharing knowledge, as I said this is completely new world to..." + (show)
@doshi

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?

Jump to this post

@doshi Thank for sharing the pathology report results here. That’s exactly what was needed to get the excellent support you’ve received. What a wonderful group we have here who support one another and were able to give you the information you are seeking.

Will you let me know what the oncologist recommends when see him next week?

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1 reply
cookercooker | @cookercooker | Nov 20 11:21am

Hi there,
I have endometrial stage3 C serous cell. My diagnosis is similar to you wife's. I have been through a total hysterectomy and 6 rounds of platinum-based chemo. I didn't respond to the chemo: cancer migrated to my right inguinal node (which I believe the doctor removed from your wife?) My doctor first recommended Lenvatinib plus Pembrolizumab as a second line treatment, but then changed his mind and put me on Letrozole, a hormone treatment, saying that the side fx were much more tolerable. The Len Pem may come later, if the tumor doesn't respond to the Letrolzole. That will be discovered in three months.
I had to look up HRD and found this: https://www.healthline.com/health/ovarian-cancer/hrd-ovarian-cancer
Hope this helps.

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doshi | @doshi | Nov 20 2:45pm
In reply to @naturegirl5 "@doshi Thank for sharing the pathology report results here. That’s exactly what was needed to get..." + (show)
@naturegirl5

@doshi Thank for sharing the pathology report results here. That’s exactly what was needed to get the excellent support you’ve received. What a wonderful group we have here who support one another and were able to give you the information you are seeking.

Will you let me know what the oncologist recommends when see him next week?

Jump to this post

Sure, will let you know once confirmed

REPLY
doshi | @doshi | Nov 20 2:47pm
In reply to @tbkomparda "Your very welcome I hope she tests positive for either one especially the PDL-1 for immunotherapy..." + (show)
@tbkomparda

Your very welcome I hope she tests positive for either one especially the PDL-1 for immunotherapy if I may ask what type of Ovarian Cancer does she have? High Grade, Low Grade

Jump to this post

To be honest I don't have details of exact type but going to ask Oncologist next week and I guess he may have to do more tests to find out exact type

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tbkomparda | @tbkomparda | Nov 20 4:33pm
In reply to @doshi "Thanks @tbkomparda, we have appointment with Oncologiest next week, I have made note of these tests..." + (show)
@doshi

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

Jump to this post

Just saw your post that mentioned Endometroid OC on the pathology report which is what I have most times it is low grade estrogen driven standard protocol after her chemo is to go on an Aromatase/estrogen inhibitor pill Letrozole is one of the better tolerated ones her report should also state that it was Estrogen positive. Not sure where your located Mayo is excellent, I flew to MD Anderson in Houston for a second opinion with Dr Gershenson he’s the guru in low grade the majority of OC 90% is high grade, low grade is not as common and treated differently the chemo she’s on now is the gold standard for all types. OC is a wild card can recur the estrogen inhibitor assuming that is her sub-type works best when she starts right after her chemo is finished hope I didn’t overwhelm you there’s a couple of wonderful support groups Facebook Ovarian Cancer support & Facebook Low-grade ovarian cancer caregivers forum I’ve learned one must be their own advocate in this journey and survivors are one of the best resources.

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1 reply
doshi | @doshi | Nov 21 12:15pm
In reply to @tbkomparda "Just saw your post that mentioned Endometroid OC on the pathology report which is what I..." + (show)
@tbkomparda

Just saw your post that mentioned Endometroid OC on the pathology report which is what I have most times it is low grade estrogen driven standard protocol after her chemo is to go on an Aromatase/estrogen inhibitor pill Letrozole is one of the better tolerated ones her report should also state that it was Estrogen positive. Not sure where your located Mayo is excellent, I flew to MD Anderson in Houston for a second opinion with Dr Gershenson he’s the guru in low grade the majority of OC 90% is high grade, low grade is not as common and treated differently the chemo she’s on now is the gold standard for all types. OC is a wild card can recur the estrogen inhibitor assuming that is her sub-type works best when she starts right after her chemo is finished hope I didn’t overwhelm you there’s a couple of wonderful support groups Facebook Ovarian Cancer support & Facebook Low-grade ovarian cancer caregivers forum I’ve learned one must be their own advocate in this journey and survivors are one of the best resources.

Jump to this post

Thanks for your help and info, I shall discuss about this Estrogen - Letrozole Pill with my oncologiest next week.

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doshi | @doshi | Nov 29 5:53am

Hi All
First if all thank you for your help with details above which gave me enough knoledge to speak to our doctor.
I have been to see her earlier this week and found below answer and details
1. Cancer Subtype : Endometrioid adenocarcinoma.
2. Primary: She siad most likely from endometriosis/adenomyosis -- than Ovary but not sure.

I requested for beow test
1. PD-L1 - she said not important for this type of Gyne cancer. She said MMR is more reliable and because we are pMMR immunotherapy benifits are much lesser (less than 15-20% i.e Dostarlimab)
2. FRA folic acid test - She said not recommended for us. Mainly because treatment is only for re-occurance
3. POLE gene - She said will look in to but may not help.

So current plan for treatment is :
* Complete Chemo therapy - Question here is she said 4 Chemo may be enough but not sure and asked to continue with 6 if she can tolerate.
* RadioTherapy : After chemo.

I have few questions here:

1. Anyone here has been in similar situation where origin of Primary couldn't determined 100% and what have you done?
2. Anyone pMMR and HRD negative with Stage IIIC Endometrial
3. When I asked how do we know if treatment is working? she said because we removed all cancer so CA125 and CT Scan (both are being done regular) may help but its not source of truth and she said we will only know if it re-occure. ---To be honest this answer has made me bit anxious as how come we can't measure anyway if treatment is working or not? Aneone got any idea on this?

REPLY
1 reply
charlotte12 | @charlotte12 | Nov 30 12:23pm

I have a different ovarian cancer. I can only share my experience with 3. at the bottom of your post. I received the same answer from my oncologist.

REPLY
doshi | @doshi | Dec 2 11:50am
In reply to @doshi "Hi All First if all thank you for your help with details above which gave me..." + (show)
@doshi

Hi All
First if all thank you for your help with details above which gave me enough knoledge to speak to our doctor.
I have been to see her earlier this week and found below answer and details
1. Cancer Subtype : Endometrioid adenocarcinoma.
2. Primary: She siad most likely from endometriosis/adenomyosis -- than Ovary but not sure.

I requested for beow test
1. PD-L1 - she said not important for this type of Gyne cancer. She said MMR is more reliable and because we are pMMR immunotherapy benifits are much lesser (less than 15-20% i.e Dostarlimab)
2. FRA folic acid test - She said not recommended for us. Mainly because treatment is only for re-occurance
3. POLE gene - She said will look in to but may not help.

So current plan for treatment is :
* Complete Chemo therapy - Question here is she said 4 Chemo may be enough but not sure and asked to continue with 6 if she can tolerate.
* RadioTherapy : After chemo.

I have few questions here:

1. Anyone here has been in similar situation where origin of Primary couldn't determined 100% and what have you done?
2. Anyone pMMR and HRD negative with Stage IIIC Endometrial
3. When I asked how do we know if treatment is working? she said because we removed all cancer so CA125 and CT Scan (both are being done regular) may help but its not source of truth and she said we will only know if it re-occure. ---To be honest this answer has made me bit anxious as how come we can't measure anyway if treatment is working or not? Aneone got any idea on this?

Jump to this post

Does anyone has any experiance and idea for above?
Can somoene please help with details if you have gone through similar journey?

REPLY
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