Hi Coleen & thank you for the response. She finished 8 rounds of chemo & is now on Avastin every three weeks for 15 rounds. We are waiting for results of CA 125 taken at the last chemo. She had been wavering around the 30, 33 mark on the last two. We hope for good results-she is so scared. The worst of it all is the fear. She’s a very responsible gal & since diagnosis has been taking care of important things. I know she is trying to relieve me of as much as she can possibly do or get done. Bless her heart. Shes a wonderful young lady, 63. We both are constantly looking for new therapy in the works, clinical trials or at this point a glimmer of hope to keep us going. I know we are not the only ones dealing with this - we try to stay positive till we can’t. I’m in a caregiver support group. It’s just devastating. People going thru cancer are brave & pioneering for the future of treatment.
Hi everyone,
First thank you for sharing your experiences & i hope you all are doing well.
My name is Dene. My wife has been diagnosed with stage 3C peritoneal, fallopian/ovarian cancer.
BRCA1, BRCA2 or HRD are all negative - no genetic mutations.
Are any of you the same circumstance? If so how long have you been in treatment & what have you experienced so far with treatment?
Your responses are appreciated.
Hi everyone,
First thank you for sharing your experiences & i hope you all are doing well.
My name is Dene. My wife has been diagnosed with stage 3C peritoneal, fallopian/ovarian cancer.
BRCA1, BRCA2 or HRD are all negative - no genetic mutations.
Are any of you the same circumstance? If so how long have you been in treatment & what have you experienced so far with treatment?
Your responses are appreciated.
Hi Jan, what a story. And what a fish (not a fish story, lol). Like @dntsass01's son's story, your husband's experiences brings hope. I really appreciate your joining this discussion group. I'm sure that @turbo48@scjoyce and @dorcarvajal will appreciate bouncing things off you and having your support.
I was diagnosed with peritoneal ovarian cancer Stage 4 on Jan 17, 2020. It metastasised in my lymph nodes. I had a hysterectomy in 2001 which left my left ovary for hormones. I found a soft lump in my left clavicle area in December and had biopsy, cat scan and first oncology appt Jan 17th, went in for port Jan 21 and chemo started Jan.23rd. Rapid treatment.
Lucky-No tumors anywhere, but all lymph nodes on left side were affected. They say it started up in my left side groin node.
I had started having major rash attacks that were diagnosed as eczema for 3 years with steroid treatment. My thyroid had gone crazy and worked on that during that time too.
When they ran my Cancer Antigen blood test it came back 500. Everything moved rapidly. COVID hit a month later so my husband could not go with to infusion treatments. He would drop me off and sit in parking lot all day to chat with me. Was terrible but made me stronger for myself.
I was told if chemo did not work to prepare.
I believe in holistic medicine too. So I used both with approval of my oncologist. Prayers and positive thinking works miracles too. I was realistic and got things in order with my hubby and sons and families.
As my infusions worked my CA125 number dropped to 18 after 6 months of infusion.
I have been in remission since, I kept port in until June this year for good luck. Then decided I wanted to be relieved of all of it.
I have been told it is not cured only in remission. But My oncologist calls me his miracle!
I have not been able to find anyone with this cancer, so hoping to compare and support others treatments.
Hi @cmk421, welcome. Dealing with a cancer diagnosis during the pandemic was particularly rough. Your husband sounds like he is your rock. What a journey and now in remission. Yay!
I was diagnosed with peritoneal ovarian cancer Stage 4 on Jan 17, 2020. It metastasised in my lymph nodes. I had a hysterectomy in 2001 which left my left ovary for hormones. I found a soft lump in my left clavicle area in December and had biopsy, cat scan and first oncology appt Jan 17th, went in for port Jan 21 and chemo started Jan.23rd. Rapid treatment.
Lucky-No tumors anywhere, but all lymph nodes on left side were affected. They say it started up in my left side groin node.
I had started having major rash attacks that were diagnosed as eczema for 3 years with steroid treatment. My thyroid had gone crazy and worked on that during that time too.
When they ran my Cancer Antigen blood test it came back 500. Everything moved rapidly. COVID hit a month later so my husband could not go with to infusion treatments. He would drop me off and sit in parking lot all day to chat with me. Was terrible but made me stronger for myself.
I was told if chemo did not work to prepare.
I believe in holistic medicine too. So I used both with approval of my oncologist. Prayers and positive thinking works miracles too. I was realistic and got things in order with my hubby and sons and families.
As my infusions worked my CA125 number dropped to 18 after 6 months of infusion.
I have been in remission since, I kept port in until June this year for good luck. Then decided I wanted to be relieved of all of it.
I have been told it is not cured only in remission. But My oncologist calls me his miracle!
I have not been able to find anyone with this cancer, so hoping to compare and support others treatments.
Hello Thankyou for your message... again just before I was due to have the operation my scan showed the cancer was stable.
When I finished chemo I went on a mostly all organic diet and lots of organic carrot juice,made by myself with ginger and turmeric,I put the stable desease down to that , and with only the knowledge of the op going to give me just an extra 6 months I chose to decline it.
I had 4 good months till January this year then I was taken ill with a bad infection.
When I was told in February my life expectancy was 6 months,I decided to start taking medical cannabis and started improving more or less straight away,the first time I had felt like myself for a long time and I just kept getting better and better,
None of us know what the future holds,I believe god sent me a miracle, however long it lasts no one knows 🙏
Congratulations on helping control your disease process with complementary therapies. I have also done that and am in year 12 with metastatic squamous cell carcinoma. I recommend a book titled The Rebel's Apothecary by Jenny Sansouci to learn about medical mushrooms (not hallucinogenic) and also marijuana information. She kept her father alive for over 3 years with pancreatic cancer and I learned a lot from all her research and shared information. I know of another patient who controlled his advanced prostate cancer for over 14 years with medical marijuana, supplements, and diet and exercise. I'm so glad that you are enjoying life again. Stay strong and continue your march toward good health.
@elle797 You have been through so much. If you feel comfortable sharing, I'm curious why you cancelled surgery last September. Since you entered palliative care in February I'm thinking that perhaps you decided that enough was enough with the treatments.
I'm very happy for you that you feel much better and that the scan showed stability and even a decrease. This is very good news.
Do you have support from family? A healing prayer circle?
Hello Thankyou for your message... again just before I was due to have the operation my scan showed the cancer was stable.
When I finished chemo I went on a mostly all organic diet and lots of organic carrot juice,made by myself with ginger and turmeric,I put the stable desease down to that , and with only the knowledge of the op going to give me just an extra 6 months I chose to decline it.
I had 4 good months till January this year then I was taken ill with a bad infection.
When I was told in February my life expectancy was 6 months,I decided to start taking medical cannabis and started improving more or less straight away,the first time I had felt like myself for a long time and I just kept getting better and better,
None of us know what the future holds,I believe god sent me a miracle, however long it lasts no one knows 🙏
Hi I was diagnosed in March 22 with advanced 3c primary peritoneal cancer.Had chemotherapy last summer,should have had 8 lots but stopped after 5 due to side affects.
Was due to have debulking September 22 but cancelled it.
I have been really ill January to May this year ,infection,sepsis and lung drain. Was given 6 months life expectancy in February and put on palliative.
Started to pick up in June had scan and showed stable desease,have felt really good since🙏
It's a miracle 🙏
@elle797 You have been through so much. If you feel comfortable sharing, I'm curious why you cancelled surgery last September. Since you entered palliative care in February I'm thinking that perhaps you decided that enough was enough with the treatments.
I'm very happy for you that you feel much better and that the scan showed stability and even a decrease. This is very good news.
Do you have support from family? A healing prayer circle?
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Hi Coleen & thank you for the response. She finished 8 rounds of chemo & is now on Avastin every three weeks for 15 rounds. We are waiting for results of CA 125 taken at the last chemo. She had been wavering around the 30, 33 mark on the last two. We hope for good results-she is so scared. The worst of it all is the fear. She’s a very responsible gal & since diagnosis has been taking care of important things. I know she is trying to relieve me of as much as she can possibly do or get done. Bless her heart. Shes a wonderful young lady, 63. We both are constantly looking for new therapy in the works, clinical trials or at this point a glimmer of hope to keep us going. I know we are not the only ones dealing with this - we try to stay positive till we can’t. I’m in a caregiver support group. It’s just devastating. People going thru cancer are brave & pioneering for the future of treatment.
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3 ReactionsHi @dene87, I'm tagging @elle797 @cmk421 @rdubins @thompske to make sure that they see your post and join me in welcoming you to the group.
May I ask what treatment(s) have been recommended for your wife? How is she doing? How are YOU doing?
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1 ReactionHi everyone,
First thank you for sharing your experiences & i hope you all are doing well.
My name is Dene. My wife has been diagnosed with stage 3C peritoneal, fallopian/ovarian cancer.
BRCA1, BRCA2 or HRD are all negative - no genetic mutations.
Are any of you the same circumstance? If so how long have you been in treatment & what have you experienced so far with treatment?
Your responses are appreciated.
-
Like -
Helpful -
Hug
3 ReactionsLove to hear from anyone who has primary peritoneal cancer
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2 ReactionsHi I have primary peritoneal cancer,diagnosed 3/2022.
I was told I wasn't suitable for Hipec and never really understood why.
It sounds amazing.
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1 ReactionHi @cmk421, welcome. Dealing with a cancer diagnosis during the pandemic was particularly rough. Your husband sounds like he is your rock. What a journey and now in remission. Yay!
I also invite you to join the discussions in the Gynecologic Cancers Support Group here: https://connect.mayoclinic.org/group/gynecologic-cancer/
I was diagnosed with peritoneal ovarian cancer Stage 4 on Jan 17, 2020. It metastasised in my lymph nodes. I had a hysterectomy in 2001 which left my left ovary for hormones. I found a soft lump in my left clavicle area in December and had biopsy, cat scan and first oncology appt Jan 17th, went in for port Jan 21 and chemo started Jan.23rd. Rapid treatment.
Lucky-No tumors anywhere, but all lymph nodes on left side were affected. They say it started up in my left side groin node.
I had started having major rash attacks that were diagnosed as eczema for 3 years with steroid treatment. My thyroid had gone crazy and worked on that during that time too.
When they ran my Cancer Antigen blood test it came back 500. Everything moved rapidly. COVID hit a month later so my husband could not go with to infusion treatments. He would drop me off and sit in parking lot all day to chat with me. Was terrible but made me stronger for myself.
I was told if chemo did not work to prepare.
I believe in holistic medicine too. So I used both with approval of my oncologist. Prayers and positive thinking works miracles too. I was realistic and got things in order with my hubby and sons and families.
As my infusions worked my CA125 number dropped to 18 after 6 months of infusion.
I have been in remission since, I kept port in until June this year for good luck. Then decided I wanted to be relieved of all of it.
I have been told it is not cured only in remission. But My oncologist calls me his miracle!
I have not been able to find anyone with this cancer, so hoping to compare and support others treatments.
-
Like -
Helpful -
Hug
4 ReactionsCongratulations on helping control your disease process with complementary therapies. I have also done that and am in year 12 with metastatic squamous cell carcinoma. I recommend a book titled The Rebel's Apothecary by Jenny Sansouci to learn about medical mushrooms (not hallucinogenic) and also marijuana information. She kept her father alive for over 3 years with pancreatic cancer and I learned a lot from all her research and shared information. I know of another patient who controlled his advanced prostate cancer for over 14 years with medical marijuana, supplements, and diet and exercise. I'm so glad that you are enjoying life again. Stay strong and continue your march toward good health.
Hello Thankyou for your message... again just before I was due to have the operation my scan showed the cancer was stable.
When I finished chemo I went on a mostly all organic diet and lots of organic carrot juice,made by myself with ginger and turmeric,I put the stable desease down to that , and with only the knowledge of the op going to give me just an extra 6 months I chose to decline it.
I had 4 good months till January this year then I was taken ill with a bad infection.
When I was told in February my life expectancy was 6 months,I decided to start taking medical cannabis and started improving more or less straight away,the first time I had felt like myself for a long time and I just kept getting better and better,
None of us know what the future holds,I believe god sent me a miracle, however long it lasts no one knows 🙏
-
Like -
Helpful -
Hug
6 Reactions@elle797 You have been through so much. If you feel comfortable sharing, I'm curious why you cancelled surgery last September. Since you entered palliative care in February I'm thinking that perhaps you decided that enough was enough with the treatments.
I'm very happy for you that you feel much better and that the scan showed stability and even a decrease. This is very good news.
Do you have support from family? A healing prayer circle?
-
Like -
Helpful -
Hug
3 Reactions