I have ovarian cancer

Posted by joannedb @joannedb, Jul 1, 2016

Hi I’m Joanne. New to this group and I have Ovarian Cancer. Looking to connect with others with OVC.

@rochellewisner and @odette, as you wait to find an in-person support group in your respective areas, I invite you to join other women here who are talking about living with ovarian cancer of all types and grades. Why don't you start by telling the group a bit about you?

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@colleenyoung

@pauldale4, I don't think it is being selfish to be selective about how you spend your time and with whom. We often sign up for multiple online support groups, especially when seeking answers. Cast the net wide to gather information, right. But then it can become too much and overwhelming. That's when you pick and choose what is right for you.

When do you find out about getting into the Herceptin trial?

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Thanks for responding. I should find out this week. I have to get an echocardiogram first.

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@pauldale4

Sorry I haven’t been posting lately, I was spending too much time reading posts on multiple sites like the Facebook group “Sisterhood of Ovarian Cancer Survivors” and all the negative postings were getting me down so I only look when I want to find out about a specific treatment or problem. I guess that’s kind of selfish but I have to be careful I don’t get too depressed. I have 3C high grade, I’m 2 1/2 years since diagnosed and am facing my second recurrence. I’m being considered for the Herceptin trial as I have the Her2 gene. I’m excited about this as not too many ovarian patients have that gene, it was only used previously for breast cancer patients. It’s worked well for them so they think why not work for ovarian. I have tumors on my liver, kidney, aortic lymph and abdomen. If you haven’t had genomic testing I recommend you do as it shows what treatments are the best per your chemistry. I pray everyday for all my teal sisters and private message me if you don’t see me on here. Love and hugs to you all.

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Hi @pauldale4, I really agree with @colleenyoung. I don't think it's selfish to be selective. The wisdom comes in knowing when to step away from too much and what information to give credibility to. Thank you for all your prayers for us "teal sisters". It's always good to remember we're not in this battle alone! 🙂

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@colleenyoung

Hi @joannedb and welcome to Connect.
We have a small group of women sharing about ovarian cancer on Connect. Allow me to introduce you to @mfell @gill @jfc4 @libbysmom and @mohavegal. I’m also including @hopeful33250 in this discussion. While she doesn’t have ovarian cancer, she is one of our mentors in the Cancer group and a great support.

When were you diagnosed with cancer Joanne? How are you doing today?

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@rochelle

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@pauldale4

Sorry I haven’t been posting lately, I was spending too much time reading posts on multiple sites like the Facebook group “Sisterhood of Ovarian Cancer Survivors” and all the negative postings were getting me down so I only look when I want to find out about a specific treatment or problem. I guess that’s kind of selfish but I have to be careful I don’t get too depressed. I have 3C high grade, I’m 2 1/2 years since diagnosed and am facing my second recurrence. I’m being considered for the Herceptin trial as I have the Her2 gene. I’m excited about this as not too many ovarian patients have that gene, it was only used previously for breast cancer patients. It’s worked well for them so they think why not work for ovarian. I have tumors on my liver, kidney, aortic lymph and abdomen. If you haven’t had genomic testing I recommend you do as it shows what treatments are the best per your chemistry. I pray everyday for all my teal sisters and private message me if you don’t see me on here. Love and hugs to you all.

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When I was being treated for ovarian cancer, my medical team recommended that I not join a support group. They felt there were better ways for me to deal with my diagnosis. I spoke with a social worker on my team who was very nice. However, I felt that the support from my family and friends was ultimately more helpful. After a year, I decided to venture out and make contact with women in various on-line forums. I did connect with several women who had very similar diagnoses to mine and I maintain an on-going relationship with them privately. At times, I became so "emotionally involved" when reading posts on-line, that my team recommended I spend less time communicating in that way. I limit my time now and although I, too, felt "selfish" initially, everyone told me that I am still recovering and in many ways I find the emotional aftermath harder to cope with on a daily basis. Because my background is in science (certainly not in this area, however), I find staying on top of the latest research specific to the etiology of my OC valuable to me. I exercise, do yoga and meditation daily…anything in my arsenal to deal with anxiety. I do feel compelled to reach out to all of the women who have and are suffering with this disease. At this point, I'm trying to heal so I can do something in the future when hopefully I will be better equipped to face the future. There is a lot of discussion out there on dealing with the 15 million cancer survivors in our country who need not only medical, but emotional support as we try to navigate in our world…looking forward. I am thinking of you and hoping for the best.

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In reply to @rochellewisner "@Rochelle" + (show)
@rochellewisner

Colleen Young had suggested we communicate with each other on March 4, 2019. At that time I was facing an upcoming appointment which I find very difficult. Fortunately, it all went well, but prior to my going to the clinic, I feel almost paralyzed with fear. I wrote to Dale/ @pauldale4 regarding my thinking at this time because I, too, must limit my contact on-line. I do want to reach out to other women who are going through this experience, but I feel my capacity to "make a difference" in any way is minimal at this time. While I once played the role of the strong one in my family, I now often feel incapable of functioning in that capacity. Thank goodness for my wonderful family and friends who are incredibly understanding. I'm hoping to stay in touch with you, but I'm not consistent in my on-line communication like some women. Hope you are doing well.

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Thank you, @odette for staying in touch to help others AND to also recognize your limits. Giving back can give purpose, but we also have to know when the emotional toll is too high.
With gratitude,
Colleen

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@odette, nice to hear from you. If I can help in any way, let me know, we are all in this together and it’s great to have another survivor to communicate with. I have been to a few Gyn retreats and we have several non profits that support Ovarian and GYN cancer that hold fundraisers and events in our area (Charlotte, NC). We keep in contact through private FB groups and support each other. It really helps to have someone that understands what we are going through.

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Thank you for your kind words. I have not attended any retreats or events as I live some distance from the locations where they are held. However, I do communicate with a few women on-line which is helpful. I will stay in touch, but like you, I limit my time these days with on-line forums. Hoping all goes well for you with this new trial.

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@odette

Thank you for your kind words. I have not attended any retreats or events as I live some distance from the locations where they are held. However, I do communicate with a few women on-line which is helpful. I will stay in touch, but like you, I limit my time these days with on-line forums. Hoping all goes well for you with this new trial.

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Hello All, I am new to this group and read many of your postings. I have stage 3C ovarian, which I hope is in remission. I spent the last six months at Mayo, AZ receiving very aggressive chemo treatment. I do the ordinary recommended therapy, no carbs, no sugar, exercise, meditation, massages, positive thinking. What I found to be very useful is that when the chemo was making me crazy, I would force myself to get on the treadmill for at least 20 minutes and the pain would dissipate!

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@starko

Hello All, I am new to this group and read many of your postings. I have stage 3C ovarian, which I hope is in remission. I spent the last six months at Mayo, AZ receiving very aggressive chemo treatment. I do the ordinary recommended therapy, no carbs, no sugar, exercise, meditation, massages, positive thinking. What I found to be very useful is that when the chemo was making me crazy, I would force myself to get on the treadmill for at least 20 minutes and the pain would dissipate!

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@starko, do you live locally near Mayo Arizona or did you travel there to have treatment? Does that mean you were away from home while having 6 months of aggressive chemo treatment?

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@colleenyoung

@starko, do you live locally near Mayo Arizona or did you travel there to have treatment? Does that mean you were away from home while having 6 months of aggressive chemo treatment?

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We live in Hawaii, but would not consider any clinic other than Mayo! We were in and out of Mayo, Arizona for six months.
Another question, please…
I just received a test result ( locally) of Cancer Antigen 15-3 35 U/ML <=25 U/ML, which means I am above the standard. Google tells me this test is used for breast cancer reoccurrence. Should I worry? Do not have results yet of CA 125 or HE4. Merci

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@starko

We live in Hawaii, but would not consider any clinic other than Mayo! We were in and out of Mayo, Arizona for six months.
Another question, please…
I just received a test result ( locally) of Cancer Antigen 15-3 35 U/ML <=25 U/ML, which means I am above the standard. Google tells me this test is used for breast cancer reoccurrence. Should I worry? Do not have results yet of CA 125 or HE4. Merci

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I'm going to say the impossible – don't worry. I know that is easier said than done. But as you said, you don't have all the results of your lab work yet. These indicators really require the interpretation of our oncologist to know what they mean for YOU.

According to the OncoLlink Patient Guide to Tumor Markers (https://www.oncolink.org/cancer-treatment/procedures-diagnostic-tests/blood-tests-tumor-diagnostic-tests/patient-guide-to-tumor-markers)
"CA 15-3 is used for monitoring breast cancer, lung, ovarian, endometrial, bladder, gastrointestinal. CA 15-3 can also be elevated due to conditions other than cancer such as liver disease (cirrhosis, hepatitis), lupus, sarcoid, tuberculosis, non-cancerous breast lesions.
(Note: 30% of patients have an elevated CA 15-3 for 30-90 days after treatment, so wait 2-3 months after starting new treatment to check.)"

Starko, when did you complete treatment?

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@colleenyoung

I'm going to say the impossible – don't worry. I know that is easier said than done. But as you said, you don't have all the results of your lab work yet. These indicators really require the interpretation of our oncologist to know what they mean for YOU.

According to the OncoLlink Patient Guide to Tumor Markers (https://www.oncolink.org/cancer-treatment/procedures-diagnostic-tests/blood-tests-tumor-diagnostic-tests/patient-guide-to-tumor-markers)
"CA 15-3 is used for monitoring breast cancer, lung, ovarian, endometrial, bladder, gastrointestinal. CA 15-3 can also be elevated due to conditions other than cancer such as liver disease (cirrhosis, hepatitis), lupus, sarcoid, tuberculosis, non-cancerous breast lesions.
(Note: 30% of patients have an elevated CA 15-3 for 30-90 days after treatment, so wait 2-3 months after starting new treatment to check.)"

Starko, when did you complete treatment?

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I had my last (and final) IV chemo two and a half weeks ago.

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@starko

I had my last (and final) IV chemo two and a half weeks ago.

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Keep us posted as you get all the results and an appointment with your oncologist, @starko.

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