Connect with others with ovarian clear cell carcinoma
Interested in more discussions like this? Go to the Gynecologic Cancers group.
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).
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.
I would be interested in knowing more about the conference. When and where is it? Is it only for ovarian cancer?
Yes, it is an informational meeting about ovarian cancer (east coast).
@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?
I believe it is the NOCC in Boston.
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?
Thinking of you today!
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!
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.
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.
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.
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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