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?
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.
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.
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.
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.
I recently had major surgery to get a Large mass removed from my pelvic area. So I had surgery to get it all out, unfortunately had to have hysterectomy at 38yrs old...
So the gyno/oncologist says after "surgery went great, its ALL out, no treatment necessary"
As other nurses/doctors have said "you NEVER tell a patient it's all out, all set, you say surgery went well, she's doing good, just have to wait for the biopsies"
But he didn't, he kept it at..."its all out"
A week later, the doctor that "Got it all"
Come in my room and says, just got the biopsies back, you have 3 different types of cancer in your pelvic area 2 of them were stage 1A and didn't need treatment
But the one that was on my left ovary is called clear cell carcinoma, it's a rare, dangerous one to have, and told me I needed to have chemo to treat it to stop it from spreading. A few days later he and another oncologist from Dana Farber said I didn't need chemo!!!!
I had had it and came to Beth Israel and they are saints, my wound started to heal and their recommendation is to start chemotherapy now before it spreads, and I want to enjoy every minute of everyday, If Chemo now will prevent it from spreading, I'm going to have to do chemo.
What are people's thoughts???
Has anyone been diagnosed with ovarian clear cell carcinoma?
Did people choose to do chemotherapy to use as preventive reasons?
PLEASE PLEASE PLEASE, I want feedback because my mother doesn't think I should be getting chemo...it hurts REALLY BAD NOT TO HAVE HER SUPPORT
I recently had major surgery to get a Large mass removed from my pelvic area. So I had surgery to get it all out, unfortunately had to have hysterectomy at 38yrs old…
So the gyno/oncologist says after "surgery went great, its ALL out, no treatment necessary"
As other nurses/doctors have said "you NEVER tell a patient it's all out, all set, you say surgery went well, she's doing good, just have to wait for the biopsies"
But he didn't, he kept it at…"its all out"
A week later, the doctor that "Got it all"
Come in my room and says, just got the biopsies back, you have 3 different types of cancer in your pelvic area 2 of them were stage 1A and didn't need treatment
But the one that was on my left ovary is called clear cell carcinoma, it's a rare, dangerous one to have, and told me I needed to have chemo to treat it to stop it from spreading. A few days later he and another oncologist from Dana Farber said I didn't need chemo!!!!
I had had it and came to Beth Israel and they are saints, my wound started to heal and their recommendation is to start chemotherapy now before it spreads, and I want to enjoy every minute of everyday, If Chemo now will prevent it from spreading, I'm going to have to do chemo.
What are people's thoughts???
Has anyone been diagnosed with ovarian clear cell carcinoma?
Did people choose to do chemotherapy to use as preventive reasons?
PLEASE PLEASE PLEASE, I want feedback because my mother doesn't think I should be getting chemo…it hurts REALLY BAD NOT TO HAVE HER SUPPORT
I recently had major surgery to get a Large mass removed from my pelvic area. So I had surgery to get it all out, unfortunately had to have hysterectomy at 38yrs old...
So the gyno/oncologist says after "surgery went great, its ALL out, no treatment necessary"
As other nurses/doctors have said "you NEVER tell a patient it's all out, all set, you say surgery went well, she's doing good, just have to wait for the biopsies"
But he didn't, he kept it at..."its all out"
A week later, the doctor that "Got it all"
Come in my room and says, just got the biopsies back, you have 3 different types of cancer in your pelvic area 2 of them were stage 1A and didn't need treatment
But the one that was on my left ovary is called clear cell carcinoma, it's a rare, dangerous one to have, and told me I needed to have chemo to treat it to stop it from spreading. A few days later he and another oncologist from Dana Farber said I didn't need chemo!!!!
I had had it and came to Beth Israel and they are saints, my wound started to heal and their recommendation is to start chemotherapy now before it spreads, and I want to enjoy every minute of everyday, If Chemo now will prevent it from spreading, I'm going to have to do chemo.
What are people's thoughts???
Has anyone been diagnosed with ovarian clear cell carcinoma?
Did people choose to do chemotherapy to use as preventive reasons?
PLEASE PLEASE PLEASE, I want feedback because my mother doesn't think I should be getting chemo...it hurts REALLY BAD NOT TO HAVE HER SUPPORT
Hi Molly~ I am so very sorry to hear about your diagnosis. I am fighting clear cell carcinoma right now too and have been for 1.3 years. I was told I didn't have cancer either until my biopsies came back. The problem with the clear cell, as you know, is that the doctors can't visually see it until it is a mass and it does not show up in your regular blood work. Once you have a baseline with your CA 125 it can alert you of possible growth. My oncologist believed that he got it all out with my second surgery and suggested that I do 6 rounds of carbo/taxol regimen just as to be safe. I started chemo 4 weeks after my second surgery. I would encourage you to do the chemo since the doctors can not see clear cell carcinoma. I did not want to have any regrets. My cancer came back after only three months and I am continuing to fight it!! I'm only 49 and want to see my grand babies grow up. I believe that I am here still because of the treatments I have and continue to do. This is a crazy, serious, aggressive cancer and needs to be treated!! Please reach out to me if you want to talk more in depth.
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.
I'm sorry it's taken me so long to respond. It's been a little crazy....I'm getting ready to start radiation. The chemo is not working at all for me and there is not a lot of options right now. We're going to try radiation!! Thank you so much for your kind words...I appreciate them!! As far as what I do for emotional support....right now I have a great network of friends that are walking through this with us. However, my doctors office has put me in contact with COCA (Colorado Ovarian Cancer Alliance) and they have monthly support groups I am reaching out to. I am also thinking about doing some counseling/therapy. When your looking at a terminal illness it jacks with your mind. Some days I can't seem to focus on anything!!! I am sure the state your in has some organization for ovarian cancer.
Hi Molly~ I am so very sorry to hear about your diagnosis. I am fighting clear cell carcinoma right now too and have been for 1.3 years. I was told I didn't have cancer either until my biopsies came back. The problem with the clear cell, as you know, is that the doctors can't visually see it until it is a mass and it does not show up in your regular blood work. Once you have a baseline with your CA 125 it can alert you of possible growth. My oncologist believed that he got it all out with my second surgery and suggested that I do 6 rounds of carbo/taxol regimen just as to be safe. I started chemo 4 weeks after my second surgery. I would encourage you to do the chemo since the doctors can not see clear cell carcinoma. I did not want to have any regrets. My cancer came back after only three months and I am continuing to fight it!! I'm only 49 and want to see my grand babies grow up. I believe that I am here still because of the treatments I have and continue to do. This is a crazy, serious, aggressive cancer and needs to be treated!! Please reach out to me if you want to talk more in depth.
Hi @carleenburch please note that I removed your email address. We recommend that you use private message to share personal contact information to protect yourself from getting unwanted spam.
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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?
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1 ReactionThank you. I’m getting very good care... the cancer is very stubborn though. I hard one to have!! 😬.
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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Hug
1 ReactionHow do you handle the emotional end of all this. Support groups? Counseling?
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1 ReactionI 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.
I recently had major surgery to get a Large mass removed from my pelvic area. So I had surgery to get it all out, unfortunately had to have hysterectomy at 38yrs old...
So the gyno/oncologist says after "surgery went great, its ALL out, no treatment necessary"
As other nurses/doctors have said "you NEVER tell a patient it's all out, all set, you say surgery went well, she's doing good, just have to wait for the biopsies"
But he didn't, he kept it at..."its all out"
A week later, the doctor that "Got it all"
Come in my room and says, just got the biopsies back, you have 3 different types of cancer in your pelvic area 2 of them were stage 1A and didn't need treatment
But the one that was on my left ovary is called clear cell carcinoma, it's a rare, dangerous one to have, and told me I needed to have chemo to treat it to stop it from spreading. A few days later he and another oncologist from Dana Farber said I didn't need chemo!!!!
I had had it and came to Beth Israel and they are saints, my wound started to heal and their recommendation is to start chemotherapy now before it spreads, and I want to enjoy every minute of everyday, If Chemo now will prevent it from spreading, I'm going to have to do chemo.
What are people's thoughts???
Has anyone been diagnosed with ovarian clear cell carcinoma?
Did people choose to do chemotherapy to use as preventive reasons?
PLEASE PLEASE PLEASE, I want feedback because my mother doesn't think I should be getting chemo...it hurts REALLY BAD NOT TO HAVE HER SUPPORT
I recently had major surgery to get a Large mass removed from my pelvic area. So I had surgery to get it all out, unfortunately had to have hysterectomy at 38yrs old…
So the gyno/oncologist says after "surgery went great, its ALL out, no treatment necessary"
As other nurses/doctors have said "you NEVER tell a patient it's all out, all set, you say surgery went well, she's doing good, just have to wait for the biopsies"
But he didn't, he kept it at…"its all out"
A week later, the doctor that "Got it all"
Come in my room and says, just got the biopsies back, you have 3 different types of cancer in your pelvic area 2 of them were stage 1A and didn't need treatment
But the one that was on my left ovary is called clear cell carcinoma, it's a rare, dangerous one to have, and told me I needed to have chemo to treat it to stop it from spreading. A few days later he and another oncologist from Dana Farber said I didn't need chemo!!!!
I had had it and came to Beth Israel and they are saints, my wound started to heal and their recommendation is to start chemotherapy now before it spreads, and I want to enjoy every minute of everyday, If Chemo now will prevent it from spreading, I'm going to have to do chemo.
What are people's thoughts???
Has anyone been diagnosed with ovarian clear cell carcinoma?
Did people choose to do chemotherapy to use as preventive reasons?
PLEASE PLEASE PLEASE, I want feedback because my mother doesn't think I should be getting chemo…it hurts REALLY BAD NOT TO HAVE HER SUPPORT
Hi Molly~ I am so very sorry to hear about your diagnosis. I am fighting clear cell carcinoma right now too and have been for 1.3 years. I was told I didn't have cancer either until my biopsies came back. The problem with the clear cell, as you know, is that the doctors can't visually see it until it is a mass and it does not show up in your regular blood work. Once you have a baseline with your CA 125 it can alert you of possible growth. My oncologist believed that he got it all out with my second surgery and suggested that I do 6 rounds of carbo/taxol regimen just as to be safe. I started chemo 4 weeks after my second surgery. I would encourage you to do the chemo since the doctors can not see clear cell carcinoma. I did not want to have any regrets. My cancer came back after only three months and I am continuing to fight it!! I'm only 49 and want to see my grand babies grow up. I believe that I am here still because of the treatments I have and continue to do. This is a crazy, serious, aggressive cancer and needs to be treated!! Please reach out to me if you want to talk more in depth.
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Helpful -
Hug
2 ReactionsI'm sorry it's taken me so long to respond. It's been a little crazy....I'm getting ready to start radiation. The chemo is not working at all for me and there is not a lot of options right now. We're going to try radiation!! Thank you so much for your kind words...I appreciate them!! As far as what I do for emotional support....right now I have a great network of friends that are walking through this with us. However, my doctors office has put me in contact with COCA (Colorado Ovarian Cancer Alliance) and they have monthly support groups I am reaching out to. I am also thinking about doing some counseling/therapy. When your looking at a terminal illness it jacks with your mind. Some days I can't seem to focus on anything!!! I am sure the state your in has some organization for ovarian cancer.
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Like -
Helpful -
Hug
1 ReactionHi @carleenburch please note that I removed your email address. We recommend that you use private message to share personal contact information to protect yourself from getting unwanted spam.
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