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.
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.
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.
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.
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.
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.
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! 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?
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?
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.
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?
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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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?
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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Helpful -
Hug
1 ReactionJust 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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Helpful -
Hug
2 ReactionsHello @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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Like -
Helpful -
Hug
1 ReactionYes, 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.
-
Like -
Helpful -
Hug
1 ReactionHello! 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.
-
Like -
Helpful -
Hug
2 ReactionsWonderful 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.
-
Like -
Helpful -
Hug
3 ReactionsHi. 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?
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.
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.