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Sharing good news
My DIL was Dx May 14, 2009 Stage IV. After three surgeries at the wonderful Mayo Clinic n Rochester, MN, neoadjuvant chemo, ascites drainings, and multiple other chemos - the last May 14, 2010, she had a PET scan. Results? "No convincing evidence of disease!" Her CA-125 is at 10. We Praise God for his wonders. She has a follow-up meeting with her gyn/onc next week to see what happens next. But we are OVERJOYED!
Each of you ladies who are fighting so hard, keep up the good work. I know it's hard. I watched my son and the rest of our families suffer through this - not that I'm comparing our suffering to my DIL. But it has been so hard. And we are so pleased. I pray for all of you each day. Best wishes and God's blessings to you. K
Each of you ladies who are fighting so hard, keep up the good work. I know it's hard. I watched my son and the rest of our families suffer through this - not that I'm comparing our suffering to my DIL. But it has been so hard. And we are so pleased. I pray for all of you each day. Best wishes and God's blessings to you. K
Best Answer
DIL had Carboplatin/Taxol first - 8 rounds. Then Carboplatin/Gemzar. I can't remember how many. At the last infustion 5/14, she had full Gemzar but only 1/3 of Carbo. She had reaction to it - welts, itching - they gave her Benadryl & said her body was done w/Carbo.
In the meantime, she had a liver resection to enlarge the size of the left lobe; then hysterectomy including uterus, cervix, 6-8" bowel removal, scraping cancer off (but not in!) the liver, oomentum, fallopian, ovarary removal, plus an orange sized mass from her diaphragm; then a pleurectomy where two of her ribs were broken/sawn, and removal of most of the pleura, and removal of malignant nodes in the lung. And during all these surgeries, the continuation of chemo.
Lost her hair after first Carbo/Taxol, but it began to grow back w/Carbo/Gemzar.
She's been through the ringer. Her friends set up a caringbridge.org site, and it has over 45,000 hits w/people offering prayers and encouragement. Friends brought food & flowers over forever. Never saw anything like it. Friends pitched in to make sure 6 & 8 year olds had playdates, rides to soccer, basketball, t-ball, softball games - and horseback riding twice a week for the 8 year old. Neighbors came over & picked up laundry and returned it all clean and folded.
At first, her insurance did not conract w/Mayo, so it seemed that they would be responsible for 25% of those costs; however, Dr. Tenomarilla in Austin - gyn/onc - and physicians @ Mayo wrote letters, and the insurance wound up covering the procedures after all.
Friends held a benefit for them where silent auction items, plus a friend - a nationally known country singer and friend - sang. Dinner, et al. Raised five figures. Amazing.
In the beginning, as you all know, the 'stun' of it all was almost more than we could bear. DIL & son went to a faith healer & quickly dismissed him as a con artist; went to a guy who claimed he could cure cancer w/massage. Son said his house looked like something from 'Silence of the Lambs,' so that was no go. She also visited a hypnotherapist and thought that really helped, an acupuncturist, and a real massage therapist who came to their home after every chemo.
A beloved family couple came to their home every time there was a chemo and took copious notes, pain measurements, and continue to deal w/all of the insurance.
Through the ordeal, we have been richly and immeasurably blessed. Now, we continue to pray and to rejoice. Hope this helps your Mom. DIL just wouldn't take 'sorry, there's nothing we can do,' for an answer.
Were I to write rules, they would be
1. You must be or you must have an advocate.
2. You should take a friend or someone to doctor visits. It's hard to comprehend everything w/chemo brain and OVCA.
3. You should always have a gyn/onc.
4. You should ask for help when you need it. Friends and family really want to help, but we just sometimes don't know what to do.
5. You should create a notebook f- or have a friend do it - for all of your doctor's notes, your notes, insurance claims, test results, et al.
6. It really helped to have an OCD meticulous person there after chemo. When things didn't seem right, the cousin called the pharmacist, the doctors, whoever it took. And she did copious amounts of research herself. The cousin kept a chart of her pain tolerance 1 - 10 every time for headaches, bone/joint aches, nausea, dizziness, et al.
7. If you don't like what your first or second gyn/onc or cancer center says, get a third opinion.
8. Go to the Mayo Clinic. They are very aggressive treating OVCA. And son & DIL said they'd never been treated better. They were impressed when they called there - everytime, a real person answered, could find their file, and were cooperative. They couldn't praise the doctors and the nursing staff enough.
Sorry this was so long. Got carried away. But we are joyous and pray for a long, long, long, remission. K
In the meantime, she had a liver resection to enlarge the size of the left lobe; then hysterectomy including uterus, cervix, 6-8" bowel removal, scraping cancer off (but not in!) the liver, oomentum, fallopian, ovarary removal, plus an orange sized mass from her diaphragm; then a pleurectomy where two of her ribs were broken/sawn, and removal of most of the pleura, and removal of malignant nodes in the lung. And during all these surgeries, the continuation of chemo.
Lost her hair after first Carbo/Taxol, but it began to grow back w/Carbo/Gemzar.
She's been through the ringer. Her friends set up a caringbridge.org site, and it has over 45,000 hits w/people offering prayers and encouragement. Friends brought food & flowers over forever. Never saw anything like it. Friends pitched in to make sure 6 & 8 year olds had playdates, rides to soccer, basketball, t-ball, softball games - and horseback riding twice a week for the 8 year old. Neighbors came over & picked up laundry and returned it all clean and folded.
At first, her insurance did not conract w/Mayo, so it seemed that they would be responsible for 25% of those costs; however, Dr. Tenomarilla in Austin - gyn/onc - and physicians @ Mayo wrote letters, and the insurance wound up covering the procedures after all.
Friends held a benefit for them where silent auction items, plus a friend - a nationally known country singer and friend - sang. Dinner, et al. Raised five figures. Amazing.
In the beginning, as you all know, the 'stun' of it all was almost more than we could bear. DIL & son went to a faith healer & quickly dismissed him as a con artist; went to a guy who claimed he could cure cancer w/massage. Son said his house looked like something from 'Silence of the Lambs,' so that was no go. She also visited a hypnotherapist and thought that really helped, an acupuncturist, and a real massage therapist who came to their home after every chemo.
A beloved family couple came to their home every time there was a chemo and took copious notes, pain measurements, and continue to deal w/all of the insurance.
Through the ordeal, we have been richly and immeasurably blessed. Now, we continue to pray and to rejoice. Hope this helps your Mom. DIL just wouldn't take 'sorry, there's nothing we can do,' for an answer.
Were I to write rules, they would be
1. You must be or you must have an advocate.
2. You should take a friend or someone to doctor visits. It's hard to comprehend everything w/chemo brain and OVCA.
3. You should always have a gyn/onc.
4. You should ask for help when you need it. Friends and family really want to help, but we just sometimes don't know what to do.
5. You should create a notebook f- or have a friend do it - for all of your doctor's notes, your notes, insurance claims, test results, et al.
6. It really helped to have an OCD meticulous person there after chemo. When things didn't seem right, the cousin called the pharmacist, the doctors, whoever it took. And she did copious amounts of research herself. The cousin kept a chart of her pain tolerance 1 - 10 every time for headaches, bone/joint aches, nausea, dizziness, et al.
7. If you don't like what your first or second gyn/onc or cancer center says, get a third opinion.
8. Go to the Mayo Clinic. They are very aggressive treating OVCA. And son & DIL said they'd never been treated better. They were impressed when they called there - everytime, a real person answered, could find their file, and were cooperative. They couldn't praise the doctors and the nursing staff enough.
Sorry this was so long. Got carried away. But we are joyous and pray for a long, long, long, remission. K
Wow! And MD Anderson wouldn't even do surgery?!? This is great news. I hope her remission lasts a long, long, long time. Blessings to her -- and to all the family and friends who have supported her over the past year -- and to the doctors at Mayo as well.
That is wonderful news! You must be so so relieved and overjoyed!
I was wondering if you could share the specific chemo's your DIL had, as my mom's OC is now stage !V, and I just thought I would ask about your DIL's process through - and her blessed remission.
Again, congratulations!
Joanna
in NH
I was wondering if you could share the specific chemo's your DIL had, as my mom's OC is now stage !V, and I just thought I would ask about your DIL's process through - and her blessed remission.
Again, congratulations!
Joanna
in NH
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And thanks for sharing about the surgeries, the Mayo clinic, etc. We will find out next week what her primary Oncologist recommends now that my mom's recurrent OC has spread to her liver and lungs. We are already doing loads of research on clinical trials, and while she is so blessed to have excellent insurance, she is not sure whether the mayo clinic is in-network or not, but I have given her the link and number.
Thanks again for sharing the good news. May you all enjoy this memorial day weekend even more!
Peace~
J