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.

@odette

I find the financial burden placed on people by the pharmaceutical companies during cancer treatment outrageous. When people are at their most vulnerable, they should be given the support they need to get well. I would contact your team at the Mayo Clinic and see if they can make any suggestions regarding the cost of this drug. If your doctor recommended it, then perhaps they can advise you on how to cover the cost. Wishing you success and good health!

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It necessary to contact my oncologist as he is aware of the situation.

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@starko

It necessary to contact my oncologist as he is aware of the situation.

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I mean, NOT necessary to contact my oncologist. Thank you, anyway!

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@starko

I mean, NOT necessary to contact my oncologist. Thank you, anyway!

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I'm sorry if I was unclear in my message. I have been on several online forum for awhile now and I've encountered a number of women who have found the financial burden overwhelming for their OVCA. When I suggested you talk to your team, I meant perhaps they could give you some guidance in covering the cost of the copay. At the institution I go to, they have a separate department to help people with the cost of care. My husband's insurance covered my costs and I feel very fortunate. I find it very concerning that women undergoing care when they are so vulnerable face such an obstacle. I wish you well. I am the third generation in my family to go Mayo for care and I know they are compassionate when it comes to their patients.

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Hello @odette, I appreciate your concern for others who must bear the financial burden of cancer treatment. It sounds like your family has been very fortunate to have your medical care at Mayo. I'm glad that you have found good medical care as well as compassion!

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@odette

I'm sorry if I was unclear in my message. I have been on several online forum for awhile now and I've encountered a number of women who have found the financial burden overwhelming for their OVCA. When I suggested you talk to your team, I meant perhaps they could give you some guidance in covering the cost of the copay. At the institution I go to, they have a separate department to help people with the cost of care. My husband's insurance covered my costs and I feel very fortunate. I find it very concerning that women undergoing care when they are so vulnerable face such an obstacle. I wish you well. I am the third generation in my family to go Mayo for care and I know they are compassionate when it comes to their patients.

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Thanks Teresa. My insurance is covering the balance of the monthly $29,453 for this drug. My copay is $2100 + tax (we live in Hawaii and everything is taxed). My Mayo oncologist has suggested that we consider metformin, less toxic and less expensive. There are other alternative drugs.

Liked by odette

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I would like to hear about the symptoms of ovarian cancer. I started putting on a pound a week and I've always had a flat stomach, now have bloated big belly! Have not changed my diet or excercise and have a BMI of 22. I've had bloodwork done, CBC, thyroid A1C ect. My thyroid has always been low and have been on meds since the 80's. My doctor increased it slightly. Other then that everything was in range. I've told my doctor something is wrong, don't just gain a pound a week because I'm 66, now up 10 pounds. Had women's check last year and was told after 65 no longer need one. I have made a gyn appointment but couldn't get in for 6 weeks. Thanks for any info

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Just posted about symtoms of ovarian cancer, forgot to mention had a mother and sister with breast cancer.

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@saucy

Just posted about symtoms of ovarian cancer, forgot to mention had a mother and sister with breast cancer.

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I am sorry that you have such an unresolved condition. To my knowledge, there are no symptoms for ovarian cancer until it is advanced . This is the reason why it is the most lethal of all women’s cancers and the survival rate is low. My cancer was discovered quite by accident when I had a hemorrhoid problem and was given a CT scan. There was the cancer, stage 3C, in plain sight with literally no symptoms at all. I was slender, athletic, ate well and am 80 years old. I then received a vaginal ultrasound which confirmed the cancer. I have discovered through DNA testing at Mayo Clinic that I have a gene, RAD50 mutation that might predict both breast and ovarian cancer for an individual. I had breast cancer years ago. There are two blood tests that may be indicative of ovarian cancer, CA125 and HE 4, S, although there could be false positives. My numbers were very elevated, but have now become normal. My cancer was extremely aggressive and spread very quickly, growing for less than a year. If it had not be diagnosed when it was, I would have had 3-6 months to live. Please try to find a gyn/oncologist or go to where you can find a good one and have them look at you. Something seems to be amiss and you should know whether it is serious or something simple to cure. If you have had a hysterectomy, your chances of vaginal type cancer would be reduced!

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@starko

I am sorry that you have such an unresolved condition. To my knowledge, there are no symptoms for ovarian cancer until it is advanced . This is the reason why it is the most lethal of all women’s cancers and the survival rate is low. My cancer was discovered quite by accident when I had a hemorrhoid problem and was given a CT scan. There was the cancer, stage 3C, in plain sight with literally no symptoms at all. I was slender, athletic, ate well and am 80 years old. I then received a vaginal ultrasound which confirmed the cancer. I have discovered through DNA testing at Mayo Clinic that I have a gene, RAD50 mutation that might predict both breast and ovarian cancer for an individual. I had breast cancer years ago. There are two blood tests that may be indicative of ovarian cancer, CA125 and HE 4, S, although there could be false positives. My numbers were very elevated, but have now become normal. My cancer was extremely aggressive and spread very quickly, growing for less than a year. If it had not be diagnosed when it was, I would have had 3-6 months to live. Please try to find a gyn/oncologist or go to where you can find a good one and have them look at you. Something seems to be amiss and you should know whether it is serious or something simple to cure. If you have had a hysterectomy, your chances of vaginal type cancer would be reduced!

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Wow,great information, I will tell my daughters about Rad50. I had exactly your situation, no symptoms, a hysterectomy,some small breast cancers (removed) and recently,chemo for a very small bud/metastasis now reduced to a spot. I think I will be on a drug after I revisit my surgeon in Seattle. I am about to be 78. My mother died of colon cancer.

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@susu2

Wow,great information, I will tell my daughters about Rad50. I had exactly your situation, no symptoms, a hysterectomy,some small breast cancers (removed) and recently,chemo for a very small bud/metastasis now reduced to a spot. I think I will be on a drug after I revisit my surgeon in Seattle. I am about to be 78. My mother died of colon cancer.

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Are you in remission of ovarian now? What preventive drug will you be on? Be very wary of Olaparib. “. (trade name Lynparza) as it is very expensive. $2210 per month for the rest of your life. I am on metformin. Some recent clinicals have suggested that it can reverse the aging process! One can dream….

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Hi, I am Rochelle a year an a half after Chemo for stage 3c Ovarian Cancer . My last scan was clear, but my AC125 keeps climbing . Up to 35 now
It has me very nervous.

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Hi Rochelle, you are still within the normal range (<=46), so no worries! I must add, my Mayo gyn/oncologist is taking a blood draw every 60 days, suggesting that we need be concerned if CA125 continually rises. So far, I am as normal as you!
Remember that stress (not to mention sugar) is not a healing mechanism when dealing with cancer. Better to focus on your clear scan and not be nervous! Try to exercise and meditate! And, get a nice massage! 😁😁

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@starko

I am sorry that you have such an unresolved condition. To my knowledge, there are no symptoms for ovarian cancer until it is advanced . This is the reason why it is the most lethal of all women’s cancers and the survival rate is low. My cancer was discovered quite by accident when I had a hemorrhoid problem and was given a CT scan. There was the cancer, stage 3C, in plain sight with literally no symptoms at all. I was slender, athletic, ate well and am 80 years old. I then received a vaginal ultrasound which confirmed the cancer. I have discovered through DNA testing at Mayo Clinic that I have a gene, RAD50 mutation that might predict both breast and ovarian cancer for an individual. I had breast cancer years ago. There are two blood tests that may be indicative of ovarian cancer, CA125 and HE 4, S, although there could be false positives. My numbers were very elevated, but have now become normal. My cancer was extremely aggressive and spread very quickly, growing for less than a year. If it had not be diagnosed when it was, I would have had 3-6 months to live. Please try to find a gyn/oncologist or go to where you can find a good one and have them look at you. Something seems to be amiss and you should know whether it is serious or something simple to cure. If you have had a hysterectomy, your chances of vaginal type cancer would be reduced!

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Thanks for the info! I have a gyn appointment but hopefully with no full blown symptoms she will do an ultrasound. Am starting to have cramps and don't think that is normal at 66 years old!

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@starko

Are you in remission of ovarian now? What preventive drug will you be on? Be very wary of Olaparib. “. (trade name Lynparza) as it is very expensive. $2210 per month for the rest of your life. I am on metformin. Some recent clinicals have suggested that it can reverse the aging process! One can dream….

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I feel you are very knowledgeable about all of this and I thank you to take the time to share! I guess I am in remission from ovarian cancer but my last Cat scan showed a spot in my abdomen not connected to an organ so I have just gone through 6 sessions of carbonyl -one delAyed because of low blood numbers, the last questionable for same reason but given nonetheless as I had a blood transfusion the next dAy. Now my dr’s assistant has had me have a magnesium infusion as my blood tests showed that at 2 and I have some pills to take also. Feeling shaky but OK. Getting blood draws every week! meeting with surgeon in Seattle July 1. What she says will calm me. I know I have to work on diabetesnumbers but I am in such a swirl about all of this,that I just try to eat and rest- Thanks.

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I also have ovarian cancer just started my 3rd round of chemo today. Would love to meet others to talk. I moved to FL a year ago from CT and most of my support is back in CT

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