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.

Hello @odette

I am glad that you are reaching out to others, that is what Connect is all about! If you would like to direct a message to @kenwood1 just copy her user name at the beginner of your post and she will get a notification of it. Be sure and use the @ sign and then kenwood1 after it (with no spaces).

Teresa

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@odette

I was diagnosed with OCCC in May 2017. My chemotherapy treatments ended in September 2018. I go in every three months at this point. Physically, I am doing well. I struggle emotionally at times despite having a great deal of support. It has helped me to do research on this rare condition. Just recently, I joined Connect in hopes of finding someone else like me.

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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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@odette

I was diagnosed with OCCC in May 2017. My chemotherapy treatments ended in September 2018. I go in every three months at this point. Physically, I am doing well. I struggle emotionally at times despite having a great deal of support. It has helped me to do research on this rare condition. Just recently, I joined Connect in hopes of finding someone else like me.

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Hello @odette

I would be interested in knowing more about the conference. When and where is it? Is it only for ovarian cancer?

Teresa

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@odette

I was diagnosed with OCCC in May 2017. My chemotherapy treatments ended in September 2018. I go in every three months at this point. Physically, I am doing well. I struggle emotionally at times despite having a great deal of support. It has helped me to do research on this rare condition. Just recently, I joined Connect in hopes of finding someone else like me.

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Yes, it is an informational meeting about ovarian cancer (east coast).

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@odette

I was diagnosed with OCCC in May 2017. My chemotherapy treatments ended in September 2018. I go in every three months at this point. Physically, I am doing well. I struggle emotionally at times despite having a great deal of support. It has helped me to do research on this rare condition. Just recently, I joined Connect in hopes of finding someone else like me.

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@odette That sounds very good. Is it being sponsored by a hospital in the area? If I may ask, what city on the east coast?

Teresa

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@odette

I was diagnosed with OCCC in May 2017. My chemotherapy treatments ended in September 2018. I go in every three months at this point. Physically, I am doing well. I struggle emotionally at times despite having a great deal of support. It has helped me to do research on this rare condition. Just recently, I joined Connect in hopes of finding someone else like me.

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I believe it is the NOCC in Boston.

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@colleenyoung

Welcome to Connect, @odette and @kenwood1. I'm delighted that you found each other so quickly. Being diagnosed with a rare cancer, like ovarian clear cell carcinoma, it can be a challenge to find others like you.

Odette, when were you diagnosed? Have you started treatment?
Kenwood, Do you have more chemo to go or was 6 rounds the completed treatment at this time? How are you feeling?

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Thinking of you today!

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@colleenyoung

Welcome to Connect, @odette and @kenwood1. I'm delighted that you found each other so quickly. Being diagnosed with a rare cancer, like ovarian clear cell carcinoma, it can be a challenge to find others like you.

Odette, when were you diagnosed? Have you started treatment?
Kenwood, Do you have more chemo to go or was 6 rounds the completed treatment at this time? How are you feeling?

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My CT scan came back clear and all good! My blood work is getting better except my platelets went pretty low. I go back in 2 weeks to get it checked again! I’m feeling great though!

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@colleenyoung

Welcome to Connect, @odette and @kenwood1. I'm delighted that you found each other so quickly. Being diagnosed with a rare cancer, like ovarian clear cell carcinoma, it can be a challenge to find others like you.

Odette, when were you diagnosed? Have you started treatment?
Kenwood, Do you have more chemo to go or was 6 rounds the completed treatment at this time? How are you feeling?

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I can't tell you how happy I am that all went well for you. You have been on my mind since Wednesday. I know the feelings of anxiety leading up to an appointment. Each step is a step in the right direction…a step forward. Write whenever you feel like it.

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@kenwood1

My CT scan came back clear and all good! My blood work is getting better except my platelets went pretty low. I go back in 2 weeks to get it checked again! I’m feeling great though!

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I haven't heard from you in some time and I am hoping all is well. I have made contact with some other women on other sites that also have a diagnosis of OCCC. One woman is very positive and encouraging….and is a ten year survivor! I am now hearing stories about women who have done well for 15 and even 20 years. I find that most encouraging. Recently, I had my three month appointment and all went well. I must admit the anxiety leading up to my exams can be overwhelming at times and I try meditation, yoga, and so on to help myself. I was hoping to meet people on the Mayo Clinic site as I received a second opinion from them prior to my treatment and I worked there as a young adult. My confidence in their care is tremendous! Thinking of you.

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@kenwood1

My CT scan came back clear and all good! My blood work is getting better except my platelets went pretty low. I go back in 2 weeks to get it checked again! I’m feeling great though!

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Hello @kenwood1 I was thinking about you, along with @odette. I hope that your platelets are coming up and that you are doing well. If you are comfortable sharing more, please update us on how you are doing.

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@hopeful33250

Hello @kenwood1 I was thinking about you, along with @odette. I hope that your platelets are coming up and that you are doing well. If you are comfortable sharing more, please update us on how you are doing.

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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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