I have ovarian cancer

Posted by joannedb @joannedb, Jul 1, 2016

Hi I’m Joanne. New to this group and I have Ovarian Cancer. Looking to connect with others with OVC.

@pbprice

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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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…

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@joannedb

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.

Appreciate any and all input. Thanks, Joanne

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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?

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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.

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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.

Liked by Pamela

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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.

Liked by Pamela

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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.

Liked by Pamela

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@rochellewisner

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.

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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.

Liked by Pamela

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@starko

Hi Pam
I have completed my chemo, surgery, etc. just recently and am in remission. I was stage 3C. I think your success for remission may depend somewhat on your life style. No sugar. Go on a Mediterranean diet, exercise, meditate, get massages. Your chances of beating this thing are very good. Keep up your spirits. You Will win!

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I also went into remission , but didn’t stop eating what I like. I also know a friend who said he didn’t stop sugar in his food and had cancer in 2 parts of his body, throat and prostate, he’s been in remission now for 17 years .
Life is short, I want to enjoy mine. There isn’t the data about a lot of the things people say.

Trust the facts about what we have to stop it now and maybe we will have something that truly works.

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@rochellewisner

I also went into remission , but didn’t stop eating what I like. I also know a friend who said he didn’t stop sugar in his food and had cancer in 2 parts of his body, throat and prostate, he’s been in remission now for 17 years .
Life is short, I want to enjoy mine. There isn’t the data about a lot of the things people say.

Trust the facts about what we have to stop it now and maybe we will have something that truly works.

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Hi Rochelle. I hear you! We are all different and probably react differently to various treatments. I love to exercise as it gives me the strength and energy to do activities I enjoy and would otherwise avoid, like tennis. Because of my treadmill I have tons of energy for my age, 80! I enjoy my Mediterranean diet and occasionally break from it and feel stomach distress the next day. My body actually now prefers the more vegetarian food. I have always tried to maintain a desirable weight, so sugar has been on my taboo list. Sleep, meditation and massages help me to relax and maintain a positive attitude. Just wish my harp playing would also improve!!?!!? There are so many ovarian cancers clinicals going on around the world that I feel confident a definitive cure is close at hand, even for reoccurrence. Mayo, AZ is very diligently studying a metabolic life style in this regard. My wish for you, Rochelle is to continue to enjoy life. Keep up the good spirts!

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@starko

Hi Rochelle. I hear you! We are all different and probably react differently to various treatments. I love to exercise as it gives me the strength and energy to do activities I enjoy and would otherwise avoid, like tennis. Because of my treadmill I have tons of energy for my age, 80! I enjoy my Mediterranean diet and occasionally break from it and feel stomach distress the next day. My body actually now prefers the more vegetarian food. I have always tried to maintain a desirable weight, so sugar has been on my taboo list. Sleep, meditation and massages help me to relax and maintain a positive attitude. Just wish my harp playing would also improve!!?!!? There are so many ovarian cancers clinicals going on around the world that I feel confident a definitive cure is close at hand, even for reoccurrence. Mayo, AZ is very diligently studying a metabolic life style in this regard. My wish for you, Rochelle is to continue to enjoy life. Keep up the good spirts!

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So sorry…. your name is Pam! Apologies!

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@rochellewisner

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.

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Wondering how you are doing. Have you had your appointment at Mayo? I'm hoping they will provide you with the help you need and that you will feel confident in how to proceed.

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Hello to all,
I had asked for an appointment at Mayo clinic in AZ, but they have declined to give me an appointment. I have metastatic serous/clear cell carcinoma in my abdomen, from a primary in the uterus which was surgically removed in Nov 2017. I do not understand why they refuse to give an appointment. I was given no explanation, I am a physician
and have good insurance.
Puzzled!

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@m1b1r9

Hello to all,
I had asked for an appointment at Mayo clinic in AZ, but they have declined to give me an appointment. I have metastatic serous/clear cell carcinoma in my abdomen, from a primary in the uterus which was surgically removed in Nov 2017. I do not understand why they refuse to give an appointment. I was given no explanation, I am a physician
and have good insurance.
Puzzled!

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I am very surprised that the Mayo Clinic did not set up an appointment for you. Perhaps you should contact them again. I was diagnosed with ovarian clear cell two and a half years ago which is obviously different than the uterine form. Were you exposed to DES? For those of us with OCCC, most of us had endometriosis. As a physician, I would think they would recognize your desire to inquire about alternative treatments that might be available.

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@m1b1r9

Hello to all,
I had asked for an appointment at Mayo clinic in AZ, but they have declined to give me an appointment. I have metastatic serous/clear cell carcinoma in my abdomen, from a primary in the uterus which was surgically removed in Nov 2017. I do not understand why they refuse to give an appointment. I was given no explanation, I am a physician
and have good insurance.
Puzzled!

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@m1b1r9, I agree with Odette that you may wish to contact Mayo Clinic again to get an explanation as to why you were declined an appointment. I believe you mentioned that you were receiving treatment at MD Anderson. It is possible that reviewing your case, the physicians assessed that the care and treatments you are receiving is what they would recommend and didn't want you to incur additional costs for evaluation or travel. Or perhaps it was a capacity issue at the Arizona location. If travel is not an issue, you may inquire about an appointment the Florida or Minnesota locations.

Here is some further information about HIPEC from Mayo Clinic proceedings written for medical professionals that may interest you:
– Cytoreductive surgery and HIPEC offers effective treatment for selected patients with peritoneal carcinomatosis https://www.mayoclinic.org/medical-professionals/cancer/news/cytoreductive-surgery-and-hipec-offers-effective-treatment-for-selected-patients-with-peritoneal-carcinomatosis/mac-20429726

What treatment are you currently getting?

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@m1b1r9

Hello to all,
I had asked for an appointment at Mayo clinic in AZ, but they have declined to give me an appointment. I have metastatic serous/clear cell carcinoma in my abdomen, from a primary in the uterus which was surgically removed in Nov 2017. I do not understand why they refuse to give an appointment. I was given no explanation, I am a physician
and have good insurance.
Puzzled!

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@m1b1r9, how are you doing?

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