Enlightening! Thank you for taking time to respond to me. We will take this info to our Onc & see what he says. He’s wonderful & has his heart in each of his patients.
Thank you so very much Ruth. Best always to you as well.
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
HI Elle! Well, it must be tough to not have faith in your oncologist.... That makes this whole thing all the more stressful. I know I'm one of the lucky ones. While I live near Philadelphia, I'm only a few hours drive from Sloan Kettering in New York City, which is the best cancer center in the US. My surgeon is the top ovarian cancer doctor - and he works with a whole team, so I can relax into their expertise with confidence that they know TONS more than most (and certainly me!) about the best path forward. I count my lucky stars every day for that. And, yes, I sure did have ascites - I looked several months pregnant, and they aspirated almost 3 liters of fluid. That was in the very beginning, but no ascites anymore, especially now that the cancer is mostly gone. I still have a distended belly, but that could be all the Halloween candy I've been scarfing down. I have been comforting myself with food, which I know is not a good idea. I've added a good 10 lb (how many stones is that??) since diagnosis. It's also because my exercise has really dropped off. Fortunately, my lungs have remained clear the whole time. You and I are contemporaries! I'm just turning 70 myself. While I've only been to England a couple of times, from what I hear, Nottingham is a lovely place. I just Googled it!! OMG. Gorgeous. Stay strong, Elle. Best--Ruth
Thank you, dene - I wish you and your dear wife strength and courage as you face this journey together. It's a tough, tough road. We all have the benefit of decades of progress in the sciences for this disease, genotyping being an important one. My understanding is that the more mutations you have, the better the chance of something "getting in" to target and kill those cancer cells. So... yeah... for your wife, she'll got a higher hill to climb with no mutations at all. But there's still hope for her! I'm hearing more and more stories about women who have survived this 10 years and longer. Hang onto that. When I had my first exploratory laparoscopy I enrolled in a study with Sloan Kettering that looked at over 500 mutations/alterations, and the results show that I have 4 mutations: TP53, RD1, PRDM14 and STK40. I have two alterations: FGFR1 and CCNE1, both of which are likely to respond to immunotherapy. I believe that treatment will be down the road a bit, once I'm past surgery and the post surgery chemo. Best to you both! Ruth
Enlightening! Thank you for taking time to respond to me. We will take this info to our Onc & see what he says. He’s wonderful & has his heart in each of his patients.
Thank you so very much Ruth. Best always to you as well.
Hi and thank you so much for sharing your experiences, I wish you continued success.
One important consideration is a person’s genotype. There is BRAC1, BRAC2, HRD positive or negative. Those are the notable ones I am aware of. Those markers tell you what type of therapies can be used & how effective they might be for your situation. They are called mutations. My wife has no mutations - good in one respect but in regards to therapies available in her situation, not so good. For a person with mutation more therapies are available. For my wife there is slim opportunity.
So my question would be… are you any of these?
Hi and thank you so much for sharing your experiences, I wish you continued success.
One important consideration is a person’s genotype. There is BRAC1, BRAC2, HRD positive or negative. Those are the notable ones I am aware of. Those markers tell you what type of therapies can be used & how effective they might be for your situation. They are called mutations. My wife has no mutations - good in one respect but in regards to therapies available in her situation, not so good. For a person with mutation more therapies are available. For my wife there is slim opportunity.
So my question would be… are you any of these?
Thank you, dene - I wish you and your dear wife strength and courage as you face this journey together. It's a tough, tough road. We all have the benefit of decades of progress in the sciences for this disease, genotyping being an important one. My understanding is that the more mutations you have, the better the chance of something "getting in" to target and kill those cancer cells. So... yeah... for your wife, she'll got a higher hill to climb with no mutations at all. But there's still hope for her! I'm hearing more and more stories about women who have survived this 10 years and longer. Hang onto that. When I had my first exploratory laparoscopy I enrolled in a study with Sloan Kettering that looked at over 500 mutations/alterations, and the results show that I have 4 mutations: TP53, RD1, PRDM14 and STK40. I have two alterations: FGFR1 and CCNE1, both of which are likely to respond to immunotherapy. I believe that treatment will be down the road a bit, once I'm past surgery and the post surgery chemo. Best to you both! Ruth
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 and thank you so much for sharing your experiences, I wish you continued success.
One important consideration is a person’s genotype. There is BRAC1, BRAC2, HRD positive or negative. Those are the notable ones I am aware of. Those markers tell you what type of therapies can be used & how effective they might be for your situation. They are called mutations. My wife has no mutations - good in one respect but in regards to therapies available in her situation, not so good. For a person with mutation more therapies are available. For my wife there is slim opportunity.
So my question would be… are you any of these?
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?
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It would be interesting to hear what your HRD test results reveal if you care to share.
HI Elle! Well, it must be tough to not have faith in your oncologist.... That makes this whole thing all the more stressful. I know I'm one of the lucky ones. While I live near Philadelphia, I'm only a few hours drive from Sloan Kettering in New York City, which is the best cancer center in the US. My surgeon is the top ovarian cancer doctor - and he works with a whole team, so I can relax into their expertise with confidence that they know TONS more than most (and certainly me!) about the best path forward. I count my lucky stars every day for that. And, yes, I sure did have ascites - I looked several months pregnant, and they aspirated almost 3 liters of fluid. That was in the very beginning, but no ascites anymore, especially now that the cancer is mostly gone. I still have a distended belly, but that could be all the Halloween candy I've been scarfing down. I have been comforting myself with food, which I know is not a good idea. I've added a good 10 lb (how many stones is that??) since diagnosis. It's also because my exercise has really dropped off. Fortunately, my lungs have remained clear the whole time. You and I are contemporaries! I'm just turning 70 myself. While I've only been to England a couple of times, from what I hear, Nottingham is a lovely place. I just Googled it!! OMG. Gorgeous. Stay strong, Elle. Best--Ruth
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2 ReactionsEnlightening! Thank you for taking time to respond to me. We will take this info to our Onc & see what he says. He’s wonderful & has his heart in each of his patients.
Thank you so very much Ruth. Best always to you as well.
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1 Reactionand to answer your question, my HRD results are not back yet, but BRAC1+2 are negative
Thank you, dene - I wish you and your dear wife strength and courage as you face this journey together. It's a tough, tough road. We all have the benefit of decades of progress in the sciences for this disease, genotyping being an important one. My understanding is that the more mutations you have, the better the chance of something "getting in" to target and kill those cancer cells. So... yeah... for your wife, she'll got a higher hill to climb with no mutations at all. But there's still hope for her! I'm hearing more and more stories about women who have survived this 10 years and longer. Hang onto that. When I had my first exploratory laparoscopy I enrolled in a study with Sloan Kettering that looked at over 500 mutations/alterations, and the results show that I have 4 mutations: TP53, RD1, PRDM14 and STK40. I have two alterations: FGFR1 and CCNE1, both of which are likely to respond to immunotherapy. I believe that treatment will be down the road a bit, once I'm past surgery and the post surgery chemo. Best to you both! Ruth
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Helpful -
Hug
1 ReactionHi and thank you so much for sharing your experiences, I wish you continued success.
One important consideration is a person’s genotype. There is BRAC1, BRAC2, HRD positive or negative. Those are the notable ones I am aware of. Those markers tell you what type of therapies can be used & how effective they might be for your situation. They are called mutations. My wife has no mutations - good in one respect but in regards to therapies available in her situation, not so good. For a person with mutation more therapies are available. For my wife there is slim opportunity.
So my question would be… are you any of these?
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
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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?
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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
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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?
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3 Reactions