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.

@susu2

I am 2 years out from ovarian cancer Stage 3c-had a big surgery and chemo therapy. Still feel exhausted, partly because of so many checkups and Blood Tests! But my cancer dr. Just mentioned at my last visit that it could come back ( some of the contamination could have been missed) and since I had some very small breast lumps (lumpectomy) and a recent colonoscopy taking out 4 precancerous polyps I am bracing but don’t know either how common recurrence is.I am about to be 77. Would like to hear some others’ experience with this.

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Brca neg. two year NED ovarian cancer survivor just diagnosed with stage two breast cancer. I have severe neuropathy following chemo which may be worse due to my autoimmune diseases. Is there anyone in a similar situation who can give advise me on expectations with Aromatase inhibitors?

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@chowmama2

Brca neg. two year NED ovarian cancer survivor just diagnosed with stage two breast cancer. I have severe neuropathy following chemo which may be worse due to my autoimmune diseases. Is there anyone in a similar situation who can give advise me on expectations with Aromatase inhibitors?

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Hi @chowmama2 and welcome to Connect.
What a blow to be diagnosed with a second type of cancer after being 2 years without evidence of disease (NED) of ovarian cancer. I'd like to direct you to a couple of discussions in the Breast Cancer group (https://connect.mayoclinic.org/group/breast-cancer/)
– Breast Cancer and Neuropathy https://connect.mayoclinic.org/discussion/just-to-say-hello/
– Concerned about the side effects of anastrozole https://connect.mayoclinic.org/discussion/i-completed-all-treatments-for-breast-cancer-but-now-i-am-supposed/

Have you had surgery and chemo for both cancers?

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I recently did a story on my friend Michelle who is living with stage four ovarian cancer for the past 5 years. She is a story of HOPE & inspiration and has received care from both Mayo Clinic and Mayo Clinic Health System. I wish you well.

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@everett.kristin

I recently did a story on my friend Michelle who is living with stage four ovarian cancer for the past 5 years. She is a story of HOPE & inspiration and has received care from both Mayo Clinic and Mayo Clinic Health System. I wish you well.

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Sept. 28 was my 77th birthday,and I was looking for some more replies to this thread but it stops at this video. I had a complete hysterectomy after Stage 3 C ,starting in the Fallopian tubes. So far numbers have been good: 24 at last reading. Also had a lumpectomy for two very small cancers in the right breast-dr.didn’t feel that surgery was necessary but I didn’t want to handle the stress. Lookin at some of these numbers I cannot believe some of you are living with them! Why? Why don’t you have surgery? I am depressed at short term memory loss and fatigue but trust my blood test results and feel grateful at the competence of my medical team. I have Medicare and Unid Health Care and a supportive family. Am staying away from Letrasol as some friends have had severe psychological reactions to that and besides my primary cancer dr. Says the odds aren’t worth it. Please, those who are dealing with worse numbers: Why are you not getting treatment? With 💕

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@susu2

Sept. 28 was my 77th birthday,and I was looking for some more replies to this thread but it stops at this video. I had a complete hysterectomy after Stage 3 C ,starting in the Fallopian tubes. So far numbers have been good: 24 at last reading. Also had a lumpectomy for two very small cancers in the right breast-dr.didn’t feel that surgery was necessary but I didn’t want to handle the stress. Lookin at some of these numbers I cannot believe some of you are living with them! Why? Why don’t you have surgery? I am depressed at short term memory loss and fatigue but trust my blood test results and feel grateful at the competence of my medical team. I have Medicare and Unid Health Care and a supportive family. Am staying away from Letrasol as some friends have had severe psychological reactions to that and besides my primary cancer dr. Says the odds aren’t worth it. Please, those who are dealing with worse numbers: Why are you not getting treatment? With 💕

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@susu2, I'd like to introduce you to @chowmama2 who is an ovarian cancer survivor and just recently was also diagnosed with breast cancer. As an ovarian and breast cancer survivor yourself, I thought it would be good for you to meet.

Susu, you mention staying away from letrazole. Has your primary cancer doctor suggested using another aromatase inhibitor (AI) or is the risk of side effects higher than the treatment benefit of all AIs in your case?

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@susu2

Sept. 28 was my 77th birthday,and I was looking for some more replies to this thread but it stops at this video. I had a complete hysterectomy after Stage 3 C ,starting in the Fallopian tubes. So far numbers have been good: 24 at last reading. Also had a lumpectomy for two very small cancers in the right breast-dr.didn’t feel that surgery was necessary but I didn’t want to handle the stress. Lookin at some of these numbers I cannot believe some of you are living with them! Why? Why don’t you have surgery? I am depressed at short term memory loss and fatigue but trust my blood test results and feel grateful at the competence of my medical team. I have Medicare and Unid Health Care and a supportive family. Am staying away from Letrasol as some friends have had severe psychological reactions to that and besides my primary cancer dr. Says the odds aren’t worth it. Please, those who are dealing with worse numbers: Why are you not getting treatment? With 💕

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Hi Susu2, I was diagnosed with stage 1 ovarian cancer in March of 2015. I was so excited to hit my 2 years NED in July, but was diagnosed with stage 2 breast cancer in August. And, I am BRCA negative. I had lumpectomy, getting ready for radiology and have started an aromatase inhibitor. ER/PR pos, HER neg. Worried about effect of more drugs. I have severe neuropathy from the chemo for the Ovarian cancer and on way too many meds for that. The fatigue, memory loss, and anxiety are at times overwhelming. Trying to balance pain management with fatigue mgmt is a problm…it changes day to day. I am 61, I am frustrated that I can no longer do what I used to, and no one, especially not my family members understand my limitations. They expect me to do all the things I used to do. Until now my OC number have been very good, I have my next follow up in November.

ChowMama

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Yes,I relate to your problems! But I am 77 live on the opposite coast to my children and grandkids and they (after 2 years) of hearing my fatigue and complaints of not being able to even walk without lack of balance,are settling in to the new grandma. My husband (retired) is doing a lot of caregiving. I am depressed,though,at age,condition and fatigue. Beginning,though,to assert my new reality so that others can see it. I am planning to enter a “Live Strong” program at the Y to assess my strength capabilities and meet other survivors. You have had a lot. Be sure to let your friends/family know how you feel.They have to accept what is. Be good to yourself!

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I have stage 4 ovarian cancer. Was diagnosed 19 months ago and completed 16 Taxol/Carboplatin treatments in Jan. Scans were clear then numbers started climbing and new scans revealed new tumors. Started Gemzar/Avastin treatments in August. One of my biggest problems now is night sweats, have to get up and change night cloths from 1 to 3 times a night. Anyone have any ideas for relief?

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@pat417

I have stage 4 ovarian cancer. Was diagnosed 19 months ago and completed 16 Taxol/Carboplatin treatments in Jan. Scans were clear then numbers started climbing and new scans revealed new tumors. Started Gemzar/Avastin treatments in August. One of my biggest problems now is night sweats, have to get up and change night cloths from 1 to 3 times a night. Anyone have any ideas for relief?

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Hi @pat417, sounds like a hormonal reaction. If I remember correctly you had a hysterectomy. Did the night sweats only start since going on the gemcitabine and bevacizumab (Gemzar/Avastin) combination treatment or did they just get worse with the treatment? It must be so disruptive to have to change 1-3 times a night.

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@colleenyoung

Hi @pat417, sounds like a hormonal reaction. If I remember correctly you had a hysterectomy. Did the night sweats only start since going on the gemcitabine and bevacizumab (Gemzar/Avastin) combination treatment or did they just get worse with the treatment? It must be so disruptive to have to change 1-3 times a night.

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No, they started with the Taxol/carboplaten treatments, but may have been caused by the hysterectomy just before the chemo. They have gotten worse on this treatment plan. I had been using hormones up until several years prior to the hysterectomy. My Oncologist doesn't want me to use hormones and suggested a tylenol each night. Maybe gives just very slight relief. I'm scheduled to begin an Avastin maintenance plan in 3 weeks.

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@everett.kristin

I recently did a story on my friend Michelle who is living with stage four ovarian cancer for the past 5 years. She is a story of HOPE & inspiration and has received care from both Mayo Clinic and Mayo Clinic Health System. I wish you well.

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Thank you for the inspiration and hope!

Liked by everett.kristin

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Hi all,
@pat417, how are you doing with the Avastin maintenance?

@susu2, did you end up checking out the LiveStrong program?

@chowmama2, has your neuropathy subsided at all or is it permanent? I bet Karen would appreciate hearing from you here: https://connect.mayoclinic.org/discussion/neuropathy-11/

@leannn how are you doing?

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I hav eplied to Karen and Live Strong wants me to wait till the next session at the Y as I have fallen twice so omething is going on with sense of balance. Thanksforallthe time you spend monitoring all of this. I want to spend time Not on the computer. 🌞

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@colleenyoung

Hi all,
@pat417, how are you doing with the Avastin maintenance?

@susu2, did you end up checking out the LiveStrong program?

@chowmama2, has your neuropathy subsided at all or is it permanent? I bet Karen would appreciate hearing from you here: https://connect.mayoclinic.org/discussion/neuropathy-11/

@leannn how are you doing?

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The Avastin didn't stop the growth of the cancer. Just got an appointment at UCLA for a trial. I see them next Tuesday. Will update when I find out more and return home.

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I am a little discouraged that it is so difficult to find others with low grade ovarian cancer, but I've read through some of the other posts and keep going. Today I woke up in the middle of ther night with pain radiating from my left hip area and pray it goes away soon! I don't know about anyone else, but when the cancer reoccured in 2014, I went through a normal day of work and then developed pain in my abdomen and ended up in ER. Therefore, I must admit to having a little bit of a panic internally (I never worry anyone else unless I really need help). Every little ache and pain triggers a bit of, "is this it, are we progressing to the next level". I'm just hoping and praying it's all going to go away like most little aches and pains. I have a trip coming up and I just want to relax and have fun!

Otherwise, my treatment of fulvestrant and Kisqali continue to stabilize the cancer. This makes 6 months which is celebrated! Fatigue, joint pain, swelling from lymphodema, low immune system, and hip/pelvic pain is what I cope with daily.

Are symptoms of pain, fatigue, and abdominal stomach issues the symptoms for the typical decline? I would imagine so.

I stay very upbeat with my family and my friends. I can relate to some others who comment about others feeling they are so strong or asking them to talk with someone else that needs support. I have no problems doing that and feel useful (I just retired as a school counselor for 25 years so I have a bit of experience talking about tough things.) But, sharing my struggles and having others understand is especially hard because of my attitude and faith. I get the, "you look so good" comment often. No one would realize the symptoms I deal with or the heart felt weighty prayers spoken through the day. I guess to some extent, I wouldn't want it any other way. It allows me to live, go places with my husband, visit my kids, laugh with friends, without getting "stuck" on the hard part of this cancer. Plus, this cancer for me comes after a long line of trials- stroke @ 18 that paralyzed my right side, learned to walk, talk, and speak all over again, 4 open heart surgeries, ablations, pacemaker, and ovarian cancer in 02, reoccuring in 2014 to the fight now. I can't complain, I've been blessed, but it's a heavy load at times. That's why I was just trying to find someone with Low Grade Stage 4. 🙂

Thanks for listening.

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