Rare cancer: ovarian clear cell carcinoma

Posted by odette @odette, Jul 18, 2018

Connect with others with ovarian clear cell carcinoma

Interested in more discussions like this? Go to the Gynecologic Cancers group.

@kenwood1

Hi! Yes I am doing well! My platelets came back. I feel good and getting back into swing of everything. I have more bloodwork for my yearly physical his week. I will have my cholesterol, thyroid and triglycerides tested. I’m cutinto see how chemo has effected these!

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@kenwood1
Good to hear from you. I'm glad that everything is getting back to normal for you!

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@odette

Did you attend the conference? I am attending an event in September which I hope to find informative. I understand feeling anxious.

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Hello @odette
Have you attended the September conference yet? I would be interested in knowing if it was helpful to you.

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@kenwood1

Hi! Yes I am doing well! My platelets came back. I feel good and getting back into swing of everything. I have more bloodwork for my yearly physical his week. I will have my cholesterol, thyroid and triglycerides tested. I’m cutinto see how chemo has effected these!

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Glad to hear you are doing so well. I have a physical coming up soon, too. Hopefully, everything will be normal for the both of us. Have you been attending meetings with your local chapter for ovarian cancer? Did you attend the conference at the local resort? I hope you are getting support from family and friends. Take care. Hope to stay in touch.

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@hopeful33250

Hello @odette
Have you attended the September conference yet? I would be interested in knowing if it was helpful to you.

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Not yet. I have mixed feelings about attending because I anticipate it will focus on HGSC and may not touch upon OCCC as it is so rare. Actually, I have been in touch with a number of researchers that work on OCCC which I find very helpful. I've also connected with several women who also have OCCC. Thank you for your encouragement.

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@odette

Not yet. I have mixed feelings about attending because I anticipate it will focus on HGSC and may not touch upon OCCC as it is so rare. Actually, I have been in touch with a number of researchers that work on OCCC which I find very helpful. I've also connected with several women who also have OCCC. Thank you for your encouragement.

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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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@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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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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@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?

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@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.

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@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.

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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.

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@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.

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