Hi all,I guess I'm just here for support and to get my story out. My mom was diagnosed with stage 3c ovarian around May 2022. She had symptoms for about 3 months before which her primary care doctor thought was a bacterial infection. My mom kept going back to her and saying there is no way that a bacterial infection could cause distension that bad. Finally had a transvaginal ultra sound and CT which confirmed a mass and massive ascites.
Mom started carboplatin and taxol around June or July 2022 which stabilized but didn't shrink her tumors. Found to be inoperable during an exploratory laparotomy. Did few more cycles and they added avastin. Then she resumed just avastin during our Christmas season that year. Avastin didn't manage it and she did a round of doxorubicin but had progression with it. Summer 2023 she started elahere. It gave her the most success and stabilized her disease for about 6 months but the fluid started building around November 2023. She had a couple of cycles of Gemzar, no meaningful response. Started enhertu in March and her CA125 went down from over 1020 to 250 in 3 cycles but started going back up. She was having extreme fatigue and nausea that felt like more than side effects of chemo. Got diagnosed with innumerable small brain mets around memorial day. Had 10 rounds of whole brain radiation. She seemed to be doing much better a few weeks ago when I saw her and she was getting more meds to manage symptoms through palliative care. However her fluid started building back up. Doctor informed us yesterday that it's time for a hospice consultation as any further chemo is more likely to shorten her longevity than help.
I guess I'm here for advice and support for those of you who might be in a similar situation or are feeling as frustrated about starting hospice or having a loved one start hospice.
Written by
Chatterbox76
To view profiles and participate in discussions please or .
I am really sorry to hear about your mom’s difficult journey so far. 😞 I wanted to ask if your mom ever had tumour testing done and if there was a chance that she could qualify for immunotherapy.
Please ask your doctor to check if her tumours are dMMR (Mismatch Repair deficient) or pMMR (Mismatch Repair proficient). Immunotherapy especially Pembrolizumab is a miracle for many!!
Thank you for the prayers NanB12. She did have tumor testing. I believe the two types of immunotherapy that were used with her were Avastin and Elahere. Avastin didn't help much but Elahere did for about 6 months. It seemed like my mom was living fully while taking that medication.
Sending love and hugs. So sad to read about the long trial endured by your Mum. How much she has gone through. I will pray that what lies ahead is a path that offers comfort, rest and freedom from pain. Take care of yourself so you are alert to what Mum wants.
this is so heartbreaking, I just wanted to send you warm hugs and say I pray for your mommy 🙏🙏😘🍀Did you consider second opinion or any alternative medicine to help her with symptoms? Don’t stop believing in miracles. My thoughts are with you 🙏🍀❤️
We didn't really consider alternative medicines. My dad is her primary care taker (I also have an adult disabled brother who lives with my parents, and my dad is his caretaker as well). My mom's oncologist is part of a great team. I do sometimes regret not getting a second opinion earlier in her journey but I think my parents just can't handle all the travel that a 2nd opinion would entail. Now I wish a little that I would have pushed a little harder to make it happen. The other reason I was hesitant to push them is that my mother in law had colon cancer several years ago. She went to get a 2nd opinion and it was such a crushing experience (they basically asked her why she came and that her cancer had soea
I’m sorry your mom is having such a tough time. However you don’t say what her goals are. To be honest if it were me I might welcome a rest from all the treatment at this point. Everyone is different in their tolerance of side effects and their willingness to try one drug after another. I hope you and she find peace and comfort.
In recent weeks, it seemed like she wanted more treatment. Then the pain and nausea got bad. I think she is afraid to leave us and would receive more treatment if there was a guarantee that it would extend her life. But because her cancer is so treatment resistant, I think she is just exhausted.
Maybe apart from everything ele, you can suggest treatment like gentle massage. When I was really down and out, the simple touch of relaxation massage was wonderful.
I have noticed massaging her hands and lower legs has been relaxing to her. After all the chemo she's had, the neuropathy has become really bothersome to her.
I have been fighting stage3 oc for over 5 years. My last fight was with Gemzar until I had an MRI after I had trouble speaking. (End of May) That test found brain mets, a large one pressing on the part of my brain that processes words. Since then steroids have eased my swelling. Now I am having pain in my legs (neuropathy) and the drs are trying to find a way to help me cope. My reason for replying is that I feel I am where your mom is. What quality of life do I have? I am not accepting defeat only that I am accepting I have fought the good fight and I am tired. I have an appt with my onc in 10 days and if he suggests palliative or hospice care I am going to say yes. I need help making what might be my final days on earth filled with good memories. I know my children will be upset but I want them to know, as your mom might, that I love them eternally. I haven’t lost the fight, the fight is just more than I can bear. My prayers are with your mother and your family. Do not let frustration cloud the fact that these services will be so helpful in letting these memories be positive going forward. You’ll have someone in your corner to turn to.
Hi Colette,Thank you for replying. It's definitely a hard reality and I know your children will understand, now or later, regarding your decisions with your care going forward. I have had to accept that each person responds differently to treatment and that my mom took whatever was offered and that she could handle. It is hard watching her leave us little by little. Quality of life is incredibly important at this point, as you said, to make good memories in the time we do have. I am thinking of you and your family. Hard to believe how many women are walking this journey at once and how lonely it can still feel, but I so appreciate you sharing to help us family members and our loved ones feel more connected in this.
With the family history of bowel (colon) cancer, she should also be tested for Lynch syndrome. Sorry to hear she has had such a difficult journey, but hope they find something helpful soon.
12 years before I got diagnosed with OC I was the daughter of a mum with OC and in some ways it’s harder worrying about a loved one than dealing with this awful disease for yourself.
I hope your mum can have some quality of life so you can make some memories as these will be so precious to you in the future. Xx Jen
Hello. I’m sorry that your Mom, you and the rest of your family are going through this. You must all be devastated. Has your Mom considered Niraparib as there is some evidence that this can stop the progression of brain mets. Are there any trials your Mom could apply for or is she too unwell?
What are your Moms goals? Does she just want a break from treatment or is she too ill and/or tired for further treatment? It’s a very difficult decision but you need to consider your Mom’s quality of life.
Hospice care, whether hospice at home or in a hospice aims to relieve pain and anxiety, improve quality of life and, perhaps most importantly, work with the patient and their family. Most hospices provide a holistic approach in as pleasant an environment as possible.
She's too unwell at this point to continue treatment and her doctor believes any other chemo would shorten her life and reduce quality of life based on how things have been going the last 2+ months. Her cancer is platinum resistant and unfortunately quickly developed resistance to the other treatments she's tried. My mom would continue treatment if there was a guarantee of a longer life, but her blood pressure often drops low and she's hardly eating and drinking. I guess I am still hoping that she can either have some weeks or months with us to get better on hospice and for miracles to happen.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Update on my mom and seeking advice
Devastated and cotradictions
Hair, brows and eyelashes!
