Rare cancer: ovarian clear cell carcinoma

Posted by odette @odette, Jul 18, 2018

Connect with others with ovarian clear cell carcinoma

@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.

Jump to this post

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

REPLY
@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.

Jump to this post

@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

REPLY
@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.

Jump to this post

I believe it is the NOCC in Boston.

REPLY
@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?

Jump to this post

Thinking of you today!

REPLY
@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?

Jump to this post

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!

REPLY
@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?

Jump to this post

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.

REPLY
@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!

Jump to this post

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.

REPLY
@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!

Jump to this post

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.

REPLY
@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.

Jump to this post

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!

REPLY
@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!

Jump to this post

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

REPLY
@odette

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

Jump to this post

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

REPLY
@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!

Jump to this post

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.

REPLY
@hopeful33250

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

Jump to this post

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.

REPLY
@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

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.

REPLY
Please login or register to post a reply.