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.
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!
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.
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 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 - I have ovarian cancer that had mets to abdominal wall including omentum, diaphragm, bowel and various other areas of abdominal wall. Too extensive for surgery. After 4 rounds of chemo (carboplatin and Abraxane, which is albumin-bound paclitaxol) my cancer has practically disappeared. CT scans show absent, resolved, greatly diminished, etc. Docs tell me this is an excellent response. Scheduled for debunking surgery for complete hysterectomy and possible resection of diaphragm, and unlikely but possible resection of lower bowel. CA125 went from almost 3,000 to 17. I'm very optimistic - surgery is 11/30 and I feel very encouraged. BRCA1 negative, I do have a few mutations, don't know yet about HRD. Dene I understand so well about the fear, and having to live with the ambiguity of this disease. It's life changing... but not necessarily a death sentence! Women are surviving this, I'm working with a yoga instructor who is 10 years post stage 3 ovarian, and she's the picture of health and has been disease free all this time. She's a beacon, and please try to remind your wife not to look to the internet for answers... that can be scary and depressing! How are you both holding up?
Hi elle - me, too. HIPEC is evidently pretty difficult to get through, and the side effects are sometimes not worth the benefit. I'm 69 with a pace-maker, and they basically said "no way". That being said, I've done extremely well on my chemo - I had four rounds of chemo and at this point my CA125 is 17, and all the metastasis are GONE. My CT results show absent, resolved, greatly diminished, etc. Very positive response, so I didn't really need the HIPEC. I was totally campaigning for it, but now I see that I did just as well without it. Best of luck to you - at this point you must be on the other side of your treatments - How ya doing?
Hi elle - me, too. HIPEC is evidently pretty difficult to get through, and the side effects are sometimes not worth the benefit. I'm 69 with a pace-maker, and they basically said "no way". That being said, I've done extremely well on my chemo - I had four rounds of chemo and at this point my CA125 is 17, and all the metastasis are GONE. My CT results show absent, resolved, greatly diminished, etc. Very positive response, so I didn't really need the HIPEC. I was totally campaigning for it, but now I see that I did just as well without it. Best of luck to you - at this point you must be on the other side of your treatments - How ya doing?
Thankyou for sharing your experience and I'm glad you are doing well.
Is it primary peritoneal you have?
It's been a long hard fight and still ongoing,diagnosis was March 2022.Had chemo the same year which made me really ill and didn't really work.
Went on a carrot juice and organic diet and was great up to January 2003,then in and out of hospital with infections till May.Was given 6 months life expectancy in February.
I was very low and then I started taking cannabis as I had nothing to lose.... i immediately picked up and felt amazing,first time in ages and the cancer was stable.
I had a scan in August that showed a rapid growing mass in my abdomen,I was put on a 5day course of radiotherapy and that was 3 weeks ago ,I'm still recovering from the side effects,I have an appointment on December 4th to see what's what.
I'm sorry it's a long story,take good care xx
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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.
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Helpful -
Hug
4 ReactionsHi @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/
Hi 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 ReactionLove to hear from anyone who has primary peritoneal cancer
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2 ReactionsHi 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 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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Helpful -
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1 ReactionHi 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.
-
Like -
Helpful -
Hug
3 ReactionsHi Everyone - I have ovarian cancer that had mets to abdominal wall including omentum, diaphragm, bowel and various other areas of abdominal wall. Too extensive for surgery. After 4 rounds of chemo (carboplatin and Abraxane, which is albumin-bound paclitaxol) my cancer has practically disappeared. CT scans show absent, resolved, greatly diminished, etc. Docs tell me this is an excellent response. Scheduled for debunking surgery for complete hysterectomy and possible resection of diaphragm, and unlikely but possible resection of lower bowel. CA125 went from almost 3,000 to 17. I'm very optimistic - surgery is 11/30 and I feel very encouraged. BRCA1 negative, I do have a few mutations, don't know yet about HRD. Dene I understand so well about the fear, and having to live with the ambiguity of this disease. It's life changing... but not necessarily a death sentence! Women are surviving this, I'm working with a yoga instructor who is 10 years post stage 3 ovarian, and she's the picture of health and has been disease free all this time. She's a beacon, and please try to remind your wife not to look to the internet for answers... that can be scary and depressing! How are you both holding up?
-
Like -
Helpful -
Hug
3 ReactionsHi elle - me, too. HIPEC is evidently pretty difficult to get through, and the side effects are sometimes not worth the benefit. I'm 69 with a pace-maker, and they basically said "no way". That being said, I've done extremely well on my chemo - I had four rounds of chemo and at this point my CA125 is 17, and all the metastasis are GONE. My CT results show absent, resolved, greatly diminished, etc. Very positive response, so I didn't really need the HIPEC. I was totally campaigning for it, but now I see that I did just as well without it. Best of luck to you - at this point you must be on the other side of your treatments - How ya doing?
-
Like -
Helpful -
Hug
3 ReactionsThankyou for sharing your experience and I'm glad you are doing well.
Is it primary peritoneal you have?
It's been a long hard fight and still ongoing,diagnosis was March 2022.Had chemo the same year which made me really ill and didn't really work.
Went on a carrot juice and organic diet and was great up to January 2003,then in and out of hospital with infections till May.Was given 6 months life expectancy in February.
I was very low and then I started taking cannabis as I had nothing to lose.... i immediately picked up and felt amazing,first time in ages and the cancer was stable.
I had a scan in August that showed a rapid growing mass in my abdomen,I was put on a 5day course of radiotherapy and that was 3 weeks ago ,I'm still recovering from the side effects,I have an appointment on December 4th to see what's what.
I'm sorry it's a long story,take good care xx
-
Like -
Helpful -
Hug
5 Reactions