I would also like to add my welcome to you both as you have recently joined Connect. While I have not had ovarian cancer such as you have, I have had a rare form of malignancy (neuroendocrine tumors). After the third diagnosis and surgery, I also joined Connect. Before joining Connect I did not know of others who were dealing with this type of cancer and it was very helpful to post with others who had this experience and had walked the same path I was going down. I understand that dealing with rare cancers can be a lonely road.
I am glad that you have found each other and Connect! I wish you both well as you wait for results of upcoming scans and I look forward to hearing from you both again.
Interested to see your post . Was just diagnosed with CCCO today but have had Neuroendocrine CA for almost 14 years. Was getting ready to start an aggressive treatment for that when the ovarian was found. That has been pushed to the back burner in lu of chemotherapy for OC .
Ugg. RARE CANCERS !!
I have heard of NETs, but I don't know anything about it. I'm sorry you've now been diagnosed with clear cell. As you know, it is rare although there are women on several online forum with this diagnosis. I would suggest you join Inspire that has a group specifically for CCOC. Most women you will meet with OC have HGSOC which is a completely different disease. Since March, I have found that people don't seem as engaged with these online groups probably because COVID is dominating our thoughts. For women in active treatment, it must be very challenging at this time. There are women on Inspire who are undergoing treatment now who may be able to provide you with valuable information. Have you had surgery, staging, treatment??? Stay in touch.
I have heard of NETs, but I don't know anything about it. I'm sorry you've now been diagnosed with clear cell. As you know, it is rare although there are women on several online forum with this diagnosis. I would suggest you join Inspire that has a group specifically for CCOC. Most women you will meet with OC have HGSOC which is a completely different disease. Since March, I have found that people don't seem as engaged with these online groups probably because COVID is dominating our thoughts. For women in active treatment, it must be very challenging at this time. There are women on Inspire who are undergoing treatment now who may be able to provide you with valuable information. Have you had surgery, staging, treatment??? Stay in touch.
Surgery and staging was 8 days ago. Will begin treatments within a couple of week.
Staging showed confinement to ovary.
Thank you for the info regarding inspire. I will check it out.
So glad to hear it was confined to the ovary. CCOC is often found in early stages when the outcome is positive. I would suggest you look at the NCCN recommendations which are the standards used by the NCI designated cancer centers. It is also common to look for second opinions.
Surgery and staging was 8 days ago. Will begin treatments within a couple of week.
Staging showed confinement to ovary.
Thank you for the info regarding inspire. I will check it out.
I started chemo one week ago. I am on Tazol/carboplatin and It has been a pretty tough week but getting better each day.
Someone told me bf I started that it gets a bit better after week 1 . I’m counting on that !!
Thank you for asking.
Taxol and carbo. Just had second round yesterday. 1 st round was tough ,but now that I’ve been through it once, I hope to get ahead of the muscle and bone pain this time . Taking tramadol in advance.
White count and neutrophils dropped on first round and I will be receiving udenyca injection today and after each future Treatment to avoid a repeat of the drops going forward.
All in all, I’m doing pretty good.
Had my hair buzzed earlier in the week to avoid finding hair everywhere and now getting accustomed to my new look !
Taxol and carbo. Just had second round yesterday. 1 st round was tough ,but now that I’ve been through it once, I hope to get ahead of the muscle and bone pain this time . Taking tramadol in advance.
White count and neutrophils dropped on first round and I will be receiving udenyca injection today and after each future Treatment to avoid a repeat of the drops going forward.
All in all, I’m doing pretty good.
Had my hair buzzed earlier in the week to avoid finding hair everywhere and now getting accustomed to my new look !
Glad to hear you are getting through treatment okay. Definitely not pleasant, but manageable. Your numbers will be watched carefully. Take good care. Your positive attitude will help.
Sending good thoughts to you @granna I hope that the tramadol helps you get ahead of the bone pain. I experienced some bone pain in my knees down to my ankles during days 3-5 after chemo, a warm towel/blanket helped me tremendously.
Hi, I am glad I found this discussion and will also look at the Inspire site. I'm 44 and live in Portland, OR. I noticed lumps in my lower abdomen in the summer and went to my doctor in early September. Was quickly sent to a GYN oncologist and had debulking surgery on Sept 30th. Both of my ovaries were the size of cantaloups, and the growth was found in the uterus, omentum and there was a small tumor on the bladder. They can't be completely sure if it originated in the ovaries or uterus, but we refer to it as ovarian cancer. I feel like I am unusual even for clear cell carcinoma because the cancer was found in both ovaries (rare) and I don't have any history of endometriosis, which there seems to be a high prevalence it with CCC. I started taxol/carbo chemotherapy and just had my second round. Side effects are mostly fatigue and muscle/bone pain. Second cycle seems to have less side effects, perhaps because I was still recovering from the surgery for the first cycle. Dealing with all of this during COVID has been anxiety provoking, but I'm hanging in there. Mediation helps. I'm very interested in the research from Asia that has been mentioned in this group, as well as any info on trials. Thanks.
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Interested to see your post . Was just diagnosed with CCCO today but have had Neuroendocrine CA for almost 14 years. Was getting ready to start an aggressive treatment for that when the ovarian was found. That has been pushed to the back burner in lu of chemotherapy for OC .
Ugg. RARE CANCERS !!
I have heard of NETs, but I don't know anything about it. I'm sorry you've now been diagnosed with clear cell. As you know, it is rare although there are women on several online forum with this diagnosis. I would suggest you join Inspire that has a group specifically for CCOC. Most women you will meet with OC have HGSOC which is a completely different disease. Since March, I have found that people don't seem as engaged with these online groups probably because COVID is dominating our thoughts. For women in active treatment, it must be very challenging at this time. There are women on Inspire who are undergoing treatment now who may be able to provide you with valuable information. Have you had surgery, staging, treatment??? Stay in touch.
Surgery and staging was 8 days ago. Will begin treatments within a couple of week.
Staging showed confinement to ovary.
Thank you for the info regarding inspire. I will check it out.
So glad to hear it was confined to the ovary. CCOC is often found in early stages when the outcome is positive. I would suggest you look at the NCCN recommendations which are the standards used by the NCI designated cancer centers. It is also common to look for second opinions.
Hi @granna, I believe you have recently started treatments or will be soon. What treatment will you be on? How are you doing?
I started chemo one week ago. I am on Tazol/carboplatin and It has been a pretty tough week but getting better each day.
Someone told me bf I started that it gets a bit better after week 1 . I’m counting on that !!
Thank you for asking.
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Hug
1 ReactionTaxol and carbo. Just had second round yesterday. 1 st round was tough ,but now that I’ve been through it once, I hope to get ahead of the muscle and bone pain this time . Taking tramadol in advance.
White count and neutrophils dropped on first round and I will be receiving udenyca injection today and after each future Treatment to avoid a repeat of the drops going forward.
All in all, I’m doing pretty good.
Had my hair buzzed earlier in the week to avoid finding hair everywhere and now getting accustomed to my new look !
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Hug
2 ReactionsGlad to hear you are getting through treatment okay. Definitely not pleasant, but manageable. Your numbers will be watched carefully. Take good care. Your positive attitude will help.
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1 ReactionSending good thoughts to you @granna I hope that the tramadol helps you get ahead of the bone pain. I experienced some bone pain in my knees down to my ankles during days 3-5 after chemo, a warm towel/blanket helped me tremendously.
Hi, I am glad I found this discussion and will also look at the Inspire site. I'm 44 and live in Portland, OR. I noticed lumps in my lower abdomen in the summer and went to my doctor in early September. Was quickly sent to a GYN oncologist and had debulking surgery on Sept 30th. Both of my ovaries were the size of cantaloups, and the growth was found in the uterus, omentum and there was a small tumor on the bladder. They can't be completely sure if it originated in the ovaries or uterus, but we refer to it as ovarian cancer. I feel like I am unusual even for clear cell carcinoma because the cancer was found in both ovaries (rare) and I don't have any history of endometriosis, which there seems to be a high prevalence it with CCC. I started taxol/carbo chemotherapy and just had my second round. Side effects are mostly fatigue and muscle/bone pain. Second cycle seems to have less side effects, perhaps because I was still recovering from the surgery for the first cycle. Dealing with all of this during COVID has been anxiety provoking, but I'm hanging in there. Mediation helps. I'm very interested in the research from Asia that has been mentioned in this group, as well as any info on trials. Thanks.
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Like -
Helpful -
Hug
1 Reaction