Thankyou for your reply,it is a hard fight and totally life changing,I don't feel like the same person,always so tired...
I have recently had my 70th birthday in September which was great,and more recently celebrated my son's 50th,which im most grateful for,there was a time when I didn't think I would make either.
I live on my own but moved to a lovely village to be near my daughter in Nottinghamshire England,Philadelphia sounds lovely 😊
I've found in my journey that I don't have alot of faith in my oncologist and had to source a lot myself,I don't trust him,he's very vague.
Have you suffered from acites? fluid in the abdomen and lungs?
Take great care,keep fighting 💪 xx
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
Elle, don't worry about a long story!! Good God, that's an ordeal to go through. It is a long fight. That must have been so hard to hear... a 6 mo life expectancy! I can't imagine, but guess eventually I'll get the same news. And no, my primary was ovarian, it spread to peritoneum before I started treatments. Living with ambiguity, pain and discomfort seems like what we're both left with. I just got a medical marijuana card, and I think it helps, certainly with the chemo pain and absolutely with my frame of mind. ME LIKES! The side effects of chemo have taken their toll, and I was expecting surgery day before Thanksgiving, but now they are a bit concerned about the profound shortness of breath, and want me get into my cardiologist before proceeding. I hope there's nothing wrong with my heart... This is a tough fight, Elle. We're in this together, just like all the other gals and caregivers who are signing in and reading. I am 69, live in the suburbs of Philadelphia. Married to my dearest friend, lucky me. How about you, fellow traveler?
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
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 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 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.
Connect
Connect
Like
Helpful
Hug
Thankyou for your reply,it is a hard fight and totally life changing,I don't feel like the same person,always so tired...
I have recently had my 70th birthday in September which was great,and more recently celebrated my son's 50th,which im most grateful for,there was a time when I didn't think I would make either.
I live on my own but moved to a lovely village to be near my daughter in Nottinghamshire England,Philadelphia sounds lovely 😊
I've found in my journey that I don't have alot of faith in my oncologist and had to source a lot myself,I don't trust him,he's very vague.
Have you suffered from acites? fluid in the abdomen and lungs?
Take great care,keep fighting 💪 xx
-
Like -
Helpful -
Hug
2 ReactionsElle, don't worry about a long story!! Good God, that's an ordeal to go through. It is a long fight. That must have been so hard to hear... a 6 mo life expectancy! I can't imagine, but guess eventually I'll get the same news. And no, my primary was ovarian, it spread to peritoneum before I started treatments. Living with ambiguity, pain and discomfort seems like what we're both left with. I just got a medical marijuana card, and I think it helps, certainly with the chemo pain and absolutely with my frame of mind. ME LIKES! The side effects of chemo have taken their toll, and I was expecting surgery day before Thanksgiving, but now they are a bit concerned about the profound shortness of breath, and want me get into my cardiologist before proceeding. I hope there's nothing wrong with my heart... This is a tough fight, Elle. We're in this together, just like all the other gals and caregivers who are signing in and reading. I am 69, live in the suburbs of Philadelphia. Married to my dearest friend, lucky me. How about you, fellow traveler?
-
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 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 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 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 @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?
-
Like -
Helpful -
Hug
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
-
Like -
Helpful -
Hug
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.
-
Like -
Helpful -
Hug
1 Reaction