Hello,
I am Madhu Rao, and diagnosed with endometrial cancer, and more recently with peritoneal carcinomatosis.
I am hoping to learn and get support from this group.
Thanks for your response@hopeful.
I had primary endometrial cancer, grade 3, stage 1a, and had complete hysterectomy in Nov 2017. Following this, I had brachytherapy, but chemo was not done, due to diagnosis not being clear about whether it was clear or serous cell type. So it was observation and monitoring CA125, which remained low and stable in 2018, but went up in february 2019, and then I was diagnosed with metastatic spread to liver, omentum, lymph nodes, and pelvic mass.
I have been told that HIPEC has not been done with uterine cancers in US, though I have read they are being done in other countries.
I had chemo with carboplatin and taxol, with no response after 3 treatments. Then avastin was added, and there was some decrease in the size of liver mets,
but mostly stable, with no further spread and my CA125 has gone down to 12. I am being continued on avastin every 3 weeks.
Molecular testing on my tumor does not show any tumor markers that can be targeted.
Feel pretty bad, because if I had had chemo right after my surgery, I would have had better chances of 5 year survival.
Now it has seeded in the peritoneum and in the liver. I understand it is treated same as advanced ovarian cancer. Do not know if anyone else is in a similar
situation, and what treatment has been helpful.
Thanks for reading my long history.
Believe it r not, I have done exceptionally well; there was no sickness r nausea @ first! In fact it felt like my body had been rejuvenated.
I felt a little drained of energy on my 3rd and 4th day after therapy but after that, I was up and running again. So thru all the treatments I haven't experience any severe r mild nausea. My only serious concerns now is my neuropathy has gotten worst (mostly on the left side of my body)
Believe it r not, I have done exceptionally well; there was no sickness r nausea @ first! In fact it felt like my body had been rejuvenated.
I felt a little drained of energy on my 3rd and 4th day after therapy but after that, I was up and running again. So thru all the treatments I haven't experience any severe r mild nausea. My only serious concerns now is my neuropathy has gotten worst (mostly on the left side of my body)
Hi Pam. I'm glad treatment has gone so well for you. It sounds as though it has been effective (CA-125). I, too, experienced PN in my feet. I exercise often which helps with not only strengthening my core/balance (to overcome effects of PN), but also my mental health. Also, yoga and meditation. Be well...
Hi Colleen,
I was diagnosed February of 2014. I'm currently on Avastin for maintainence but my CA125 has been increasing over the past 3 months. I completed my 1st recurrance chemo last September. My last CT was clear except for a small amount of fluid in my lungs, which could be the culprit. My next scan is in a few weeks. I suspect I'll be back on chemo soon. Wondering about treatments and /or clinical trials that others with 2nd recurrance are I in and how they are doing. I'm NOT BRACA positive and guess I could be platinum resistant as my numbers started to increase after just 6 months. I'm feeling good. I have a good support system and a positive attitude. Enjoying life one day at a time.
Hello, I have just found out about my recurrence a month ago with pain in my right lower pelvis, the scan showed the recurrence. My CA125 was up and had been gradually going up over the months. I had two differences in opinion on what to do. One Oncologist favoring Carbo platin and Doxil and the other favoring surgery and then followed by Carbo and Avastin , or another drug . I was in remission for 18 months with Carbo and Taxol . Has anyone had this experience?
I'm sorry about the recurrence, Rochelle. I don't know anything about either one of these drugs although other women on this site may have information to contribute. Before I took carboplatin and taxol, I looked up information on the side effects/ long term effects of these drugs. I believe you go to Mayo in AZ so you undoubtedly will be provided the most recent research and best advice possible. I assume they did germline testing and testing of the tumor so they could determine the best plan of action if necessary. Are these two physicians you mention at Mayo? I find being prepared for an appointment with questions in hand helps me feel more in "control" when I am under stress. Stay in touch.
Hello, thanks for listening. I feel very lucky to have a husband that is a Specialist , but not in Cancer and he knows the questions to ask and they speak the same language . He has been a huge help for me. I’m 71, and feel very happy for the wonderful life I’ve had and the great friends too.
The young women are the ones I pray will see a cure in the near future , meanwhile my trust is in God and My doctors.
You are fortunate. I, too, have had the support of my husband, children, and friends. Like you, I am older and I am grateful for the wonderful life I've had. I find it very disconcerting when I encounter much younger women on-line who have undergone dramatic changes in their lives as a result of this disease. I follow the research carefully and I believe great progress is being made. We can be hopeful for the future.
Do stay in touch. I hope that your appointment goes well.
How long have you had your cancer? Have you had any trouble with the chemo? Yes, I go to Mayo, and when I’m in Washington I go to Dr. Raish and Dr. Swisher at the University of Washington . There was a disagreement on the corse of action this time, so I going back to Mayo
Because I felt they were right. Just a gut decision ,
But that’s how I felt.
How long have you had your cancer? Have you had any trouble with the chemo? Yes, I go to Mayo, and when I’m in Washington I go to Dr. Raish and Dr. Swisher at the University of Washington . There was a disagreement on the corse of action this time, so I going back to Mayo
Because I felt they were right. Just a gut decision ,
But that’s how I felt.
I am two years past treatment. The chemo was manageable although I did lose my hair as well as develop peripheral neuropathy which I still have. As a result, the dosage was modified early on in the process. My histology is rare (LCOH--its treatment is no longer described in the 2019 NCCN guidelines for ovca). I believe you have HGSC?
Returning to Mayo seems to be the best. You will feel confident in their care. I'm hoping your appointment goes well. Stay in touch.
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Hello @m1b1r9 and welcome to Mayo Connect. I see that you have recently been diagnosed with peritoneal carcinomatosis after a previous diagnosis of endometrial cancer. How long ago were these diagnoses made? I can understand your need for support and information. It can be frightening to have two different cancer diagnoses, can't it? Has your oncologist offered any suggestions/treatments for the peritoneal carcinomatosis? I did find some information regarding treatment options offered at Mayo Clinic facilities. Here is the link to that information, https://www.mayoclinic.org/medical-professionals/cancer/news/cytoreductive-surgery-and-hipec-offers-effective-treatment-for-selected-patients-with-peritoneal-carcinomatosis/mac-20429726.
How long ago were you treated for endometrial cancer? Did you have surgery and chemo treatments?
You will find support and encouragement here on Connect.
Thanks for your response@hopeful.
I had primary endometrial cancer, grade 3, stage 1a, and had complete hysterectomy in Nov 2017. Following this, I had brachytherapy, but chemo was not done, due to diagnosis not being clear about whether it was clear or serous cell type. So it was observation and monitoring CA125, which remained low and stable in 2018, but went up in february 2019, and then I was diagnosed with metastatic spread to liver, omentum, lymph nodes, and pelvic mass.
I have been told that HIPEC has not been done with uterine cancers in US, though I have read they are being done in other countries.
I had chemo with carboplatin and taxol, with no response after 3 treatments. Then avastin was added, and there was some decrease in the size of liver mets,
but mostly stable, with no further spread and my CA125 has gone down to 12. I am being continued on avastin every 3 weeks.
Molecular testing on my tumor does not show any tumor markers that can be targeted.
Feel pretty bad, because if I had had chemo right after my surgery, I would have had better chances of 5 year survival.
Now it has seeded in the peritoneum and in the liver. I understand it is treated same as advanced ovarian cancer. Do not know if anyone else is in a similar
situation, and what treatment has been helpful.
Thanks for reading my long history.
Believe it r not, I have done exceptionally well; there was no sickness r nausea @ first! In fact it felt like my body had been rejuvenated.
I felt a little drained of energy on my 3rd and 4th day after therapy but after that, I was up and running again. So thru all the treatments I haven't experience any severe r mild nausea. My only serious concerns now is my neuropathy has gotten worst (mostly on the left side of my body)
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Helpful -
Hug
1 ReactionHi Pam. I'm glad treatment has gone so well for you. It sounds as though it has been effective (CA-125). I, too, experienced PN in my feet. I exercise often which helps with not only strengthening my core/balance (to overcome effects of PN), but also my mental health. Also, yoga and meditation. Be well...
-
Like -
Helpful -
Hug
2 ReactionsHello, I have just found out about my recurrence a month ago with pain in my right lower pelvis, the scan showed the recurrence. My CA125 was up and had been gradually going up over the months. I had two differences in opinion on what to do. One Oncologist favoring Carbo platin and Doxil and the other favoring surgery and then followed by Carbo and Avastin , or another drug . I was in remission for 18 months with Carbo and Taxol . Has anyone had this experience?
I'm sorry about the recurrence, Rochelle. I don't know anything about either one of these drugs although other women on this site may have information to contribute. Before I took carboplatin and taxol, I looked up information on the side effects/ long term effects of these drugs. I believe you go to Mayo in AZ so you undoubtedly will be provided the most recent research and best advice possible. I assume they did germline testing and testing of the tumor so they could determine the best plan of action if necessary. Are these two physicians you mention at Mayo? I find being prepared for an appointment with questions in hand helps me feel more in "control" when I am under stress. Stay in touch.
-
Like -
Helpful -
Hug
2 ReactionsHello, thanks for listening. I feel very lucky to have a husband that is a Specialist , but not in Cancer and he knows the questions to ask and they speak the same language . He has been a huge help for me. I’m 71, and feel very happy for the wonderful life I’ve had and the great friends too.
The young women are the ones I pray will see a cure in the near future , meanwhile my trust is in God and My doctors.
-
Like -
Helpful -
Hug
1 ReactionYou are fortunate. I, too, have had the support of my husband, children, and friends. Like you, I am older and I am grateful for the wonderful life I've had. I find it very disconcerting when I encounter much younger women on-line who have undergone dramatic changes in their lives as a result of this disease. I follow the research carefully and I believe great progress is being made. We can be hopeful for the future.
Do stay in touch. I hope that your appointment goes well.
-
Like -
Helpful -
Hug
1 ReactionHow long have you had your cancer? Have you had any trouble with the chemo? Yes, I go to Mayo, and when I’m in Washington I go to Dr. Raish and Dr. Swisher at the University of Washington . There was a disagreement on the corse of action this time, so I going back to Mayo
Because I felt they were right. Just a gut decision ,
But that’s how I felt.
-
Like -
Helpful -
Hug
1 ReactionI am two years past treatment. The chemo was manageable although I did lose my hair as well as develop peripheral neuropathy which I still have. As a result, the dosage was modified early on in the process. My histology is rare (LCOH--its treatment is no longer described in the 2019 NCCN guidelines for ovca). I believe you have HGSC?
Returning to Mayo seems to be the best. You will feel confident in their care. I'm hoping your appointment goes well. Stay in touch.
-
Like -
Helpful -
Hug
1 Reaction