Anyone had Immunotherapy or Maintainance Therapy when HRD Negative?
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.
The problem with cancer is that it is possible for one cell to grow into a tumor, but there's no way to detect one cancer cell. After cancer surgery, it's usually not possible to detect any remaining cancer using the tests that are available, but that doesn't mean that there aren't still a few cancer cells lurking there. So they do chemo and/or radiation hoping to kill any remaining cancer cells, even though they don't know whether or not there are actually any still there.
So there's no way to tell whether treatment worked or not. If the cancer doesn't come back, either the treatment worked, or it wasn't necessary in the first place. You only know it didn't work if the cancer comes back.
Was that your question?
Thank you @val64, yes that help understand about test etc.
I am also looking for someone who is pMMR and HRD negative to understand what type of treatment they had and what was experience.
I was staged 3a uterine with metastasis to ovary and lymphovascular invasion. Mmr proficient and negative for signs of Lunch syndrome. Nevertheless the oncologist recommended 6 cycles of chemo (Carboplatin/Taxol) and immunotherapy (Dostarlimab was what she wanted to use but my insurance is subbing Keytruda). I have researched extensively and a lot of recent research shows that there is some benefit and increased chances of progression free survival even in pmmr patients who use immunotherapy. Immunotherapy is expected to become more standard in the treatment of high risk and recurrent gynecologic cancers. Best wishes to your family and hugs to your wife. She is young and will probably tolerate the treatments really well. At least that is what my doctor told me (I'm 46 so older than you all but still considered young in terms of typical age for diagnosis of EC).
Thanks @lmontem2
So did you take Dostarlimab also have you and also did you take Radiotherapy?
We are being advised Radiotherapy due to primary tumour origin is not confirmed if it's uterus or ovary.
Also how long it's has been since your treatment?
No, the Keytruda is being used instead of of the Dostarlimab. When I was transferred over from one clinic to another because of my insurance wanting me to use an in-network provider, I was told by the new medical oncologist that they use Keytruda and not Dostarlimab. It's just their preference. Both drugs are of the same class (PD-1 inhibitors) so they should work the same way. As for the radiotherapy, I was told by my gynecologic oncologist that she didn't want to recommend it for me because of the potential side effects and the fact that the chemo/immuno regimen had a pretty much equal chance of effectiveness in my case. I haven't started any of the chemo or immuno treatment yet. My first cycle is scheduled for March 10th. I am having a port inserted this Tuesday.
@lmontem2 I'd like to welcome you to the Gynecological Cancers Group at Mayo Clinic Connect. I've noticed that you have posted in some discussions today in which you've provided encouragement and support to others and have shared your diagnosis and treatment plan.
How are you feeling about all that you have been through and with your plans going forward?
Thank you, Helen. I am feeling a little bit of everything. Sometimes it all feels surreal, Other days I feel hopeful, many times scared, and often I feel a sense of urgency to learn all I can. I guess it gives me a sense of control to know that I understand why certain treatment decisions are being made and what I can do to help. I feel pretty comfortable with the treatment plan going forward. I am just really hoping that I am in the group that doesn't experience bad side effects from the immunotherapy.
@lmontem2 Let me share our (my wife's ) experiance who just finished chemo therapy, I think that may help you.
She had surgery end of Sept 24 and started chemo on 28th Oct 24. We were really scarred and worried what will happen. But with GODs blessings she had complete Chemo without any major issues. Though 5th and 6th was bit hard but again no more than pain, tiredness and some mood swings.
I think and I hope that being quite young age you will be in similar category and don't think you would have any major issues.
We made strict diet plan and followed which may have helped at some point. Also i head about Neem, Curcumin and Papay leaves, which helps keeping Platelet and neutrophil in range, which is very important to continue with treatment and keeping you healthy. So we started consuming those after 2nd chemo.
Also morning routine of Mild Exercise, Yoga, Pranayam and Meditation and noon/ eve Walk of about 45min (except some days when she feel weak and tired specially after chemo).
Also mood swing may be an issue which we tried by only thinking and focusing on one day and max next round of treatment at at time.
Hope this helps but if you need any further details please let me know.
Also can I ask which FIGO Grade you have? Also are you getting treatment at Mayo Clinic? I am thinking to get 2nd openion at MSKCC- New York as our Oncologiest suggested CHEMO+RADIOTHERAPY and no Immunotherapy.
@doshi I am at Stage Figo IIIa, mmr Proficient. It was staged as 3a because of the spread to the right ovary. No, I am not being treated at Mayo clinic. I went to Texas Oncology for the initial consult and the surgery and that's where I was provided with the recommended treatment plan, but was transferred to Kelsey-Seybold for the infusion part of it. The medical oncologist with Kelsey agreed with Texas Oncology's proposed regimen (except for subbing the Dostarlimab as I mentioned before). A second opinion might not be a bad idea, if for no other reason, it would offer peace of mind.
Your suggestions for the supplements and exercise are very helpful and I will definitely try to get a hold of the Neem, curcumin (is this the same as tumeric?) and papaya leaves. Did you just make a tea or incorporate into recipes? We actually tried to grow a Neem tree once but it froze!
The mood swings are very real and I'm already experiencing those even though I haven't started the chemo so I will do my best to focus on one day at a time. I really appreciate your sharing the helpful advice. Please keep us posted on the 2nd opinion if you and your wife decide to seek one.