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odette
@odette

Posts: 35
Joined: Jul 18, 2018

Rare cancer: ovarian clear cell carcinoma

Posted by @odette, Jul 18, 2018

Connect with others with ovarian clear cell carcinoma

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@odette

When I was first seen and then diagnosed, I signed up to participate in several research studies at the medical facility where I received care. I also had genetic testing done and am now part of an ongoing study there as well. I read medical research articles on-line and I contact doctors/researchers with questions. People can be very responsive. It helps to be informed.

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Thanks for sharing that @odette. I am glad that you found some positive feedback as a result of the clinical trial. When will the trial end?

@hopeful33250

Thanks for sharing that @odette. I am glad that you found some positive feedback as a result of the clinical trial. When will the trial end?

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It wasn't a clinical trial actually. It is research being done at the institution where I received care. I enrolled in a number of their studies for ovarian cancer. Periodically, I give blood and they have access to my medical records. One study lasts ten years.

@kenwood1

I would be interested in hearing what reaearchers say about OCCC. I just signed up for a walk to support ovarian cancer in PHX on Dec 2nd.

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Just wondering how you are doing. I recently had an appointment and all was well, fortunately. Prior to an appointment, I experience a great deal of anxiety although it seems a bit more manageable as time goes by. My oncologist did not recommend joining a "support group" following treatment as my circumstances are so different, I guess. After feeling very isolated at times, I joined this group as well as other on-line sites. Although I have "met" several women who have similar circumstances to mine, many of them have serious challenges to face. I find that I empathize so much with them, I become distraught at times. Many of them are significantly younger (I am in my early 60s). I continue to pursue my understanding of OCCC which is rare, but research is being done. It is associated with endometriosis so I am very interested in this condition as it afflicts all of the women in my family.
We are actually visiting Arizona this winter as a possible retirement location as we have friends and relatives in the Tucson and Scottsdale areas. One of our criteria is excellent medical care which is available at the Mayo Clinic in Scottsdale. The warm weather is certainly appealing as well.
I hope that you are doing well.

Hello @odette

While I realize that your post was directed to @kenwood1, I just wanted to say hello and let you know how nice it is to hear from you and know that you are doing well. That is such good news. I am glad that you found a way out of isolation with Connect and other groups.

I'm looking forward to hearing your impressions of Arizona after your winter trip. It sounds like a nice change.

Will you keep in touch?

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@hopeful33250

Hello @odette

While I realize that your post was directed to @kenwood1, I just wanted to say hello and let you know how nice it is to hear from you and know that you are doing well. That is such good news. I am glad that you found a way out of isolation with Connect and other groups.

I'm looking forward to hearing your impressions of Arizona after your winter trip. It sounds like a nice change.

Will you keep in touch?

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Yes, I will keep in touch. I have not met many women with ovarian clear cell on this site. I have tremendous respect for the Mayo Clinic. Fortunately, I was able to obtain a second opinion from them when I was originally diagnosed (in addition to having access to another one of the finest medical facilities in the country). Having a second opinion from them was very reassuring. As I try to understand the etiology of OCCC, I am concerned about all women having access to good medical care for this rare condition.

@odette

Just wondering how you are doing. I recently had an appointment and all was well, fortunately. Prior to an appointment, I experience a great deal of anxiety although it seems a bit more manageable as time goes by. My oncologist did not recommend joining a "support group" following treatment as my circumstances are so different, I guess. After feeling very isolated at times, I joined this group as well as other on-line sites. Although I have "met" several women who have similar circumstances to mine, many of them have serious challenges to face. I find that I empathize so much with them, I become distraught at times. Many of them are significantly younger (I am in my early 60s). I continue to pursue my understanding of OCCC which is rare, but research is being done. It is associated with endometriosis so I am very interested in this condition as it afflicts all of the women in my family.
We are actually visiting Arizona this winter as a possible retirement location as we have friends and relatives in the Tucson and Scottsdale areas. One of our criteria is excellent medical care which is available at the Mayo Clinic in Scottsdale. The warm weather is certainly appealing as well.
I hope that you are doing well.

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Hello! It’s nice to hear from you! How have you been feeling? I’m doing well. My first 3 month check up went well. My CA 125 was 10 and no scan at this visit, but a PET scan is scheduled for my next 3 month check up at the end of Feb. I’m doing a walk for ovarian cancer this Sunday. It will be very emotional I’m sure! I go to Mayo Clinic in Phoenix! I love it, the Dr’s and all staff are wonderful.

Wonderful news! I am so glad that you are doing well. It is such a relief to receive good news at an appointment. You can be confident that you are getting the best of care at the Mayo Clinic!
Thank you for doing the walk for ovarian cancer. I do believe that with all of our support, In time we will conquer this disease. However, I do understand how difficult and emotional these events can be. I certainly never thought I would be in this position, but now I feel compelled to continue on this journey for all women.
Be well and stay in touch.

Hi. I was diagnosed in 11/17 with Stage IC. I underwent 6 rounds of platinum based chemo and at my first 3 month check up the cancer reoccurred. This means I am platinum resistant. Any other women out there that are platinum resistant?

@carleenburch

Hi. I was diagnosed in 11/17 with Stage IC. I underwent 6 rounds of platinum based chemo and at my first 3 month check up the cancer reoccurred. This means I am platinum resistant. Any other women out there that are platinum resistant?

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I am so sorry this has been your experience. I do not have any advice to offer, but there are many women on-line that may have words of advice to give you (Inspire, Cancer Connect, etc). I hope you are getting good care and that you will overcome this difficult time.

@carleenburch

Hi. I was diagnosed in 11/17 with Stage IC. I underwent 6 rounds of platinum based chemo and at my first 3 month check up the cancer reoccurred. This means I am platinum resistant. Any other women out there that are platinum resistant?

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I too am in the same place you are. I was diagnosed with stage 1A OCCC in Feb. 2018, went through 6 rounds of Taxol and Carboplatin. Although my numbers are good and CT is okay, my doctor removed what she call a granuloma from my vaginal cuff. The pathology came back Clear Cell cancer. They have sent it in for Molecular Testing. Right now I just feel helpless. I don’t know where to go for treatment that has actually worked. If anyone has suggestions or has been through this, please respond.

Welcome to Connect @janice1106. I can only imagine how worried you must be! I’m so glad you’ve joined us. While we wait for fellow members to join in, I thought you might be interested in reading this recent article about ovarian clear cell carcinoma:
https://www.dovemed.com/diseases-conditions/clear-cell-adenocarcinoma-ovary/

I also encourage you to view this Mayo Clinic Video Q&A about Screening and Treatment Options for Gynecologic Cancers:
https://connect.mayoclinic.org/webinar/video-qa-about-screening-and-treatment-options-for-gynecologic-cancers/

Here’s a Mayo Clinic Phase 2 study about "Using Pembrolizumab and Epacadostat in Treating Participants With Recurrent, Persistent, or Progressive Ovarian Clear Cell Carcinoma” https://www.mayo.edu/research/clinical-trials/cls-20446035
If you are interested in getting more details about this study, the contact information is listed at the bottom of the page.

@janice1106, may I ask if you could share a bit more about yourself?

@odette

I am so sorry this has been your experience. I do not have any advice to offer, but there are many women on-line that may have words of advice to give you (Inspire, Cancer Connect, etc). I hope you are getting good care and that you will overcome this difficult time.

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Thank you. I’m getting very good care… the cancer is very stubborn though. I hard one to have!! 😬.

@janice1106

I too am in the same place you are. I was diagnosed with stage 1A OCCC in Feb. 2018, went through 6 rounds of Taxol and Carboplatin. Although my numbers are good and CT is okay, my doctor removed what she call a granuloma from my vaginal cuff. The pathology came back Clear Cell cancer. They have sent it in for Molecular Testing. Right now I just feel helpless. I don’t know where to go for treatment that has actually worked. If anyone has suggestions or has been through this, please respond.

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I’m sorry to hear of your diagnosis janice1106. Mine has been very complicated and so far untreatable. I’m praying for something to work and a miracle!!
Keep me posted on how you are doing please.

@carleenburch

I’m sorry to hear of your diagnosis janice1106. Mine has been very complicated and so far untreatable. I’m praying for something to work and a miracle!!
Keep me posted on how you are doing please.

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How do you handle the emotional end of all this. Support groups? Counseling?

@janice1106

How do you handle the emotional end of all this. Support groups? Counseling?

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I didn’t ever tell you how sorry I was for your diagnosis and recurrence. This clear cell is not FUN!! My doctor at Oregon’s OHSU MEDICAL CENTER has talked to me about a vaccine ( I think it’s called vacivir)!trial that is very promising, but I don’t have a large enough tumor to qualify. Maybe it would work for you.

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