Colleen Young, Connect Director | @colleenyoung | Mar 4, 2019
@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?
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.
@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?
@susu2 Hey thanks, sorry to hear about the brain fog and balance issues. 🙁 I have been blessed there, I haven't really experienced that, but I hear, like you it's somewhat frustrating. Glad you're taking it in stride and at least marking the positives - no nausea and loss of appetite! Maybe the walker will provide a bit of independence and keep you moving to try to push that fatigue. I've been going to bed early and learning to make the best of the times I do have more energy. I imagine you do the same. Well...onward is right.
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.
@susu2 Hey thanks, sorry to hear about the brain fog and balance issues. 🙁 I have been blessed there, I haven't really experienced that, but I hear, like you it's somewhat frustrating. Glad you're taking it in stride and at least marking the positives - no nausea and loss of appetite! Maybe the walker will provide a bit of independence and keep you moving to try to push that fatigue. I've been going to bed early and learning to make the best of the times I do have more energy. I imagine you do the same. Well...onward is right.
@travelgirl Hi, I too just returned from traveling, so sorry for my slow response. Wow, 2 diagnoses within a week must have been overwhelming. I like your spirit! I do agree, a resilient state of mind and hope goes a long way! I just retired from school counseling due to the high crisis stress and the side effects and wanted to proactively take some steps to be healthier and happier. I set some goals, one being certified as an animal therapy team with my dog, Marshall, which I did. We're seeing kids weekly when I'm in town and love it! The rest of the time, I'm finding how to "stay busy" in a good way.
I have to fight my urge to get online to research to find the next option if these meds stop working, especially when I start feeling new symptoms or something feels off. But you're right, it never leaves me in a good place. I end up doing it all over again with the docs once a change is needed so I really don't need that extra stress. I find myself wanting to ask questions that doctors or researchers just can't answer at this point. I need to remember what my first oncologist said when I asked him about statistics, "What does it matter, you happen to be "one" and no one knows where your "one" will be on the charts." lol, I can so understand your brain hurting! Sometimes it's paralyzing and I just throw the thought of it behind me!
Thank you for the link! I'm definitely going to check out the exercise and look into yoga. I previously adapted (had a stroke at 18 years and have right side weakness with arm/leg) a bit of yoga at home.
My next appointment is the end of March for labs & treatment and my scans to check on the status of the cancer is the end of April. I was really blessed last week, my counts were so low I was told we may have to skip treatment, but they shot up this time. I'm saying it's the sunshine in Florida 😉 on my trip and prayers that gave a boost to the ol' immune system! That way if they bottom out again, it's a great excuse for another sun and sand vacation. lol 🙂
Hey, thanks so much, Jackie. I really appreciate your time to share your journey and advice.
Leann: Glad you got to travel-a perk-up. I have had 2 infusions with just Carboplatin no Taxol. They give me anti-nausea drips first and I have had no nausea and no loss of appetite but my brain power is slipping. I keep forgetting names/words and can’t do complex processes (I have a sweater knitting project going and can’t seem to process the directions!). As mentioned before I do not have good balance all of a sudden so have gotten a walker but have not used it yet as I usually have my husband to hang on to. Trying to come to terms with being a changed (old) person. Often tired. Well... onward. Susu2
@travelgirl Hi, I too just returned from traveling, so sorry for my slow response. Wow, 2 diagnoses within a week must have been overwhelming. I like your spirit! I do agree, a resilient state of mind and hope goes a long way! I just retired from school counseling due to the high crisis stress and the side effects and wanted to proactively take some steps to be healthier and happier. I set some goals, one being certified as an animal therapy team with my dog, Marshall, which I did. We're seeing kids weekly when I'm in town and love it! The rest of the time, I'm finding how to "stay busy" in a good way.
I have to fight my urge to get online to research to find the next option if these meds stop working, especially when I start feeling new symptoms or something feels off. But you're right, it never leaves me in a good place. I end up doing it all over again with the docs once a change is needed so I really don't need that extra stress. I find myself wanting to ask questions that doctors or researchers just can't answer at this point. I need to remember what my first oncologist said when I asked him about statistics, "What does it matter, you happen to be "one" and no one knows where your "one" will be on the charts." lol, I can so understand your brain hurting! Sometimes it's paralyzing and I just throw the thought of it behind me!
Thank you for the link! I'm definitely going to check out the exercise and look into yoga. I previously adapted (had a stroke at 18 years and have right side weakness with arm/leg) a bit of yoga at home.
My next appointment is the end of March for labs & treatment and my scans to check on the status of the cancer is the end of April. I was really blessed last week, my counts were so low I was told we may have to skip treatment, but they shot up this time. I'm saying it's the sunshine in Florida 😉 on my trip and prayers that gave a boost to the ol' immune system! That way if they bottom out again, it's a great excuse for another sun and sand vacation. lol 🙂
Hey, thanks so much, Jackie. I really appreciate your time to share your journey and advice.
Jackie, Alumna Mentor | @travelgirl | Feb 22, 2019
@leannn Sorry first off for the delayed response. I was on a work trip..
I really cannot honestly say if that how a decline happens/ I personally think it is all in our state of mind. I was diagnosed with 2 primary cancers with in a week of each other. Plus, I had H-plyori going on at the same time. I was exhausted a lot. I had surgery to remove the colon cancer. Which again left me exhausted. I think when I am given anesthesia, it exhausts me. The lymphoma I have is an early stage. So it really doesn't propose issues. So they claim. But I do find myself tired if I don't get a least 8 to 9 hours. Also, for months my stomach ached. Especially when I was a constant nervous wreck over the diagnosis.
Take a deep breath, I had too. One of my DR's recommended yoga to me. Starting that, really helped clear my mind. Plus it calmed me down and my symptoms started to fade. Give your second surgery time so you can heal.
Another thing you may want to look into is Livestrong.org. They help cancers patients in may ways with all kinds of resources. One program they offer for free is a 12 week fitness class through the YMCA. This really helped me too regain my strength..
Here is a link to their site https://www.livestrong.org/
Try to stay busy. Don't read anything online outside of Mayo connect It will make you feel worse off.
By the time I got through really about my 2 cancers.. Let me tell you, my brain started hurting, and I swore I was getting a brain tumor.. I think researching online compounds the issues.
Keep us posted and I am certain others with come forward just like you.
When is your next Dr's appointment? I would bring up your concerns with your DR and see what he has to about you joining a yoga class and teh live strong free exercise program?
Yes, @susu2 it has been a long haul. That's ok, I'm new to the Mayo Connect so Im a little awkward on how this works. Yes, I was diagnosed in 2002 with borderline ovarian cancer Had debulking surgery then monitored. I thought all was well until 2014. it reoccured as low grade stage 3C- terrible abdomen pain, went to ER weather they found another tumor. They did surgery again, went through radiation. Low grade Is a rare form of ovarian cancer, typically slower to grow, but resistant to many typical treatments. Then in 2015 it had spread through my lymph nodes, stage 4. I went on letrzole then, but last year it stopped working. Then my current meds- Kisqali and fulvestrant. So, that's my story. Yes, sure I'd like to stay in touch. Glad you're pushing throug the fatigue enjoying life! I have 2 boys, one's married living near Chicago while fis wife completes grad school. The other is in KC for now, but he's my traveler. Fatigue gets me too, I also have swelling and pain from lymphodema on my left side and effects from a previous stroke on the right. The meds have my joints ache too. But, I stil get out and do therapy dog work, -visit ny kids, travel with my husband, etc. I run back and forth to Mayo for my heart and cancer issues. Well, take care and thanks for making contact. I sure wish you the best!
I hadn’ read your earlier posts when I read this.You have had a long haul. I’m not clear about what “low grade cancer” is -if it is Stage 4, how can it be low grade? My main symptom now is fatigue. Still trying to get out,have friends, be active. My daughters are on the other coast! I have an attentive husband and a great local cancer center for treatment, I live near Seattle.
Hi, @leann - Unfortunate that it's been challenging finding many others with low-grade ovarian cancer, but glad it's been useful to read through some of the other posts. Hoping that @chowmama2 @pat417 @susu2@falconfly@travelgirl will return and offer some perspective on your question of "Are symptoms of pain, fatigue, and abdominal stomach issues the symptoms for the typical decline?"
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@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?
@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?
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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1 Reaction@susu2 Hey thanks, sorry to hear about the brain fog and balance issues. 🙁 I have been blessed there, I haven't really experienced that, but I hear, like you it's somewhat frustrating. Glad you're taking it in stride and at least marking the positives - no nausea and loss of appetite! Maybe the walker will provide a bit of independence and keep you moving to try to push that fatigue. I've been going to bed early and learning to make the best of the times I do have more energy. I imagine you do the same. Well...onward is right.
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1 ReactionLeann: Glad you got to travel-a perk-up. I have had 2 infusions with just Carboplatin no Taxol. They give me anti-nausea drips first and I have had no nausea and no loss of appetite but my brain power is slipping. I keep forgetting names/words and can’t do complex processes (I have a sweater knitting project going and can’t seem to process the directions!). As mentioned before I do not have good balance all of a sudden so have gotten a walker but have not used it yet as I usually have my husband to hang on to. Trying to come to terms with being a changed (old) person. Often tired. Well... onward. Susu2
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1 Reaction@travelgirl Hi, I too just returned from traveling, so sorry for my slow response. Wow, 2 diagnoses within a week must have been overwhelming. I like your spirit! I do agree, a resilient state of mind and hope goes a long way! I just retired from school counseling due to the high crisis stress and the side effects and wanted to proactively take some steps to be healthier and happier. I set some goals, one being certified as an animal therapy team with my dog, Marshall, which I did. We're seeing kids weekly when I'm in town and love it! The rest of the time, I'm finding how to "stay busy" in a good way.
I have to fight my urge to get online to research to find the next option if these meds stop working, especially when I start feeling new symptoms or something feels off. But you're right, it never leaves me in a good place. I end up doing it all over again with the docs once a change is needed so I really don't need that extra stress. I find myself wanting to ask questions that doctors or researchers just can't answer at this point. I need to remember what my first oncologist said when I asked him about statistics, "What does it matter, you happen to be "one" and no one knows where your "one" will be on the charts." lol, I can so understand your brain hurting! Sometimes it's paralyzing and I just throw the thought of it behind me!
Thank you for the link! I'm definitely going to check out the exercise and look into yoga. I previously adapted (had a stroke at 18 years and have right side weakness with arm/leg) a bit of yoga at home.
My next appointment is the end of March for labs & treatment and my scans to check on the status of the cancer is the end of April. I was really blessed last week, my counts were so low I was told we may have to skip treatment, but they shot up this time. I'm saying it's the sunshine in Florida 😉 on my trip and prayers that gave a boost to the ol' immune system! That way if they bottom out again, it's a great excuse for another sun and sand vacation. lol 🙂
Hey, thanks so much, Jackie. I really appreciate your time to share your journey and advice.
Best wishes and blessings!
Leann
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2 Reactions@leannn Sorry first off for the delayed response. I was on a work trip..
I really cannot honestly say if that how a decline happens/ I personally think it is all in our state of mind. I was diagnosed with 2 primary cancers with in a week of each other. Plus, I had H-plyori going on at the same time. I was exhausted a lot. I had surgery to remove the colon cancer. Which again left me exhausted. I think when I am given anesthesia, it exhausts me. The lymphoma I have is an early stage. So it really doesn't propose issues. So they claim. But I do find myself tired if I don't get a least 8 to 9 hours. Also, for months my stomach ached. Especially when I was a constant nervous wreck over the diagnosis.
Take a deep breath, I had too. One of my DR's recommended yoga to me. Starting that, really helped clear my mind. Plus it calmed me down and my symptoms started to fade. Give your second surgery time so you can heal.
Another thing you may want to look into is Livestrong.org. They help cancers patients in may ways with all kinds of resources. One program they offer for free is a 12 week fitness class through the YMCA. This really helped me too regain my strength..
Here is a link to their site
https://www.livestrong.org/
Try to stay busy. Don't read anything online outside of Mayo connect It will make you feel worse off.
By the time I got through really about my 2 cancers.. Let me tell you, my brain started hurting, and I swore I was getting a brain tumor.. I think researching online compounds the issues.
Keep us posted and I am certain others with come forward just like you.
When is your next Dr's appointment? I would bring up your concerns with your DR and see what he has to about you joining a yoga class and teh live strong free exercise program?
I wish you the best
Jackie
>
Yes, @susu2 it has been a long haul. That's ok, I'm new to the Mayo Connect so Im a little awkward on how this works. Yes, I was diagnosed in 2002 with borderline ovarian cancer Had debulking surgery then monitored. I thought all was well until 2014. it reoccured as low grade stage 3C- terrible abdomen pain, went to ER weather they found another tumor. They did surgery again, went through radiation. Low grade Is a rare form of ovarian cancer, typically slower to grow, but resistant to many typical treatments. Then in 2015 it had spread through my lymph nodes, stage 4. I went on letrzole then, but last year it stopped working. Then my current meds- Kisqali and fulvestrant. So, that's my story. Yes, sure I'd like to stay in touch. Glad you're pushing throug the fatigue enjoying life! I have 2 boys, one's married living near Chicago while fis wife completes grad school. The other is in KC for now, but he's my traveler. Fatigue gets me too, I also have swelling and pain from lymphodema on my left side and effects from a previous stroke on the right. The meds have my joints ache too. But, I stil get out and do therapy dog work, -visit ny kids, travel with my husband, etc. I run back and forth to Mayo for my heart and cancer issues. Well, take care and thanks for making contact. I sure wish you the best!
I hadn’ read your earlier posts when I read this.You have had a long haul. I’m not clear about what “low grade cancer” is -if it is Stage 4, how can it be low grade? My main symptom now is fatigue. Still trying to get out,have friends, be active. My daughters are on the other coast! I have an attentive husband and a great local cancer center for treatment, I live near Seattle.
Thank you @lisalucier, it would help to hear some perspective if there are some commonalities as to what to expect.
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