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Waiting, waiting.

Jul 29, 2009 - 10 comments
Tags:

Ovarian Cancer

,

MD Anderson

,

Mayo



My DIL's last visit to MDA was not encouraging. The gyn/onc there says she's inoperable & should continue with a new revised chemo treatment to include Avastin. At only $5k to $10k per pop - which is not covered on their insurance policy, of course. My son gets the feeling that MDA wants to 'wash their hands' of this case because the outlook apparently is not promising. It might lower MDA's positive statistics. I had friends a few years ago - MDA wouldn't take the woman who had late stage breast cancer because they didn't think their treatment would be successful. Have any of you heard stories like these? Until now, I didn't know that a person actually has to have a referral to get in to MDA. You can't just show up & say, "Hey, I have a bad cancer & I want to be treated here."

They went to see Dr. T. on Monday, and he disagrees w/MDA's recommendations. He believes that surgery should be done sooner than later. And he has set up an appointment with a liver specialist today. Depending on what that doctor says, and  here, I'm a bit confused, Dr. T. has set up an appointment at the Mayo Clinic for next Monday. Dr. T. also runs some clinical trials. My DIL insisted on options, so for the moment, it appears there are options other than, "Okay, 3 more chemos and you're done." Which is what MDA basically said.

My son said he didn't know if he would go to Mayo. He works for himself, so one of the joys of that is there are no 'paid' sick leave days. If he doesn't work, he doesn't get paid. I told him I have one leftover 'free' ticket from Southwest, and for $50, he can use it. So maybe that will help some.

Friends of the family have been/are so overwhelmingly generous. One person has set up a 5k walk around Town Lake here in Austin August 8. Another friend has set up a fund @ Wells Fargo. People keep asking what they can do to help - If she does the Avastin, she'll need that help. Then again, Avastin may be out of the picture?

Thanks to you who have responded w/encouraging words. After the MDA report last week, I took Friday off and 'cocooned.' Stayed home & slept & did nothing. Monday I came to work, but after 2 hours, I realized I was totally useless, so I went home & took another nap. Tuesday things were better. Today? I wait to hear what the liver specialist says.

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349465 tn?1289081764
by Teresa222, Jul 29, 2009
Your posts are very educational for us and I thank you for that.  When people give detailed information about the status of their battles, it is helpful to so many people. Sometimes, it is even life saving.  I know you are going through some very tough emotional times with your DIL's battle. So, I wanted to also thank you along with my well wishes. God Bless You
Teresa

Avatar universal
by Katie116, Jul 29, 2009
My son just called to say that according to the liver specialist, my DIL is operable. My son said, "It's good news. It's good news to hear, hooray, we're gonna' operate on your liver! This is good news?" But we believe it is good news. It represents hope that something can be done. He also informed me that DIL is definitely going to Mayo Clinic on Monday. Everything is happening so fast in slow motion......

Avatar universal
by abrite, Jul 29, 2009
CancerCare may be a helpful organization for your DIL as they do provide financial assistance, travel help etc. I have pasted part of their website (cancercare.org) below:

CancerCare is a national nonprofit, 501 c(3) organization that provides free, professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones, and the bereaved. CancerCare programs—including counseling and support groups, education, financial assistance and practical help—are provided by professional oncology social workers and are completely free of charge. Founded in 1944, CancerCare provided individual help to more than 100,000 people last year, in addition to the more than 1 million unique visitors to our websites.

With much care.........

523728 tn?1264621521
by bohan54, Jul 29, 2009
It is good news!  Best case scenario would be optimal debulking followed by carbo/taxol chemo.  Mayo is ranked higher for OVCA than MD Anderson.  Is it far for their home?  If so, sometimes chemo can be set up by gyn/onc at big hospital and performed at a hospital closer to the patient's home.  My sister is doing that.  Her onc is a Northwestern in Chicago but she gets her chemo in St. Joseph MI.  Imagine, our poor mom has two daughters in chemo, my for OVCA, my sis for breast.

Avatar universal
by Katie116, Jul 29, 2009
Thank you all for you concerned, kind comments. What a nightmare. It's the 21st Century, for God's sake. How can this be happening?

I have an imaginary book called "Things I Don't Understand," and all of this is in my book.

167426 tn?1254086235
by SimplyStar, Jul 29, 2009
Mayo in Minn or AZ, both very good.   leslee had the best at mayo in Minn, I was very impressed with them,  after surgery  they will offer  choices of clinical trials.

415684 tn?1257329318
by JC145, Jul 29, 2009
At least now, they will actually have a good look and see what's really going on.  Take it one step at a time and remember to breathe.  It is so heartbreaking.  May God bless you and your family.

Judy

329994 tn?1301663248
by lvfrogs, Jul 30, 2009
I can't say that I understand, but I am always here to listen. I am glad that she is getting the surgery and also going to Mayo. This seems like a good thing! Remember to try and take some quiet time for yourself. You need it too and it will help you deal with everything. Sounds like your friends are doing wonderful at helping. Let them help. Many hugs, Colleen

Avatar universal
by Katie116, Jul 30, 2009
Thank  you all. I visited w/DIL & son last night. Today, Thursday, is the day that MDA is to call them & let them know what their onc/gyns recommend, if anything. MDA has a panel where they discuss difficult cases, and Dr. Ramirez was to take DIL's case to them for brainstorming. My hunch is that my DIL has already made the decision to go to MN. They have tentatively book her for surgery on Tuesday. I say again, everything happens so fast - in slow motion....

It is good that I can talk to you. Thank you for listening & offering advice. To whomever posted the url for the Stuary Weitzman shoes, thank you. I ordered them for my DIL yesterday.

And now I will follow up w/CancerCare.

146692 tn?1314331773
by butterflytc, Aug 07, 2009
You will have a long haul in front of you Katie, I know it is hard? but you will need to find a way of staying strong for your DIL and son..but also take care of you. Stress can be very difficult on anyone. We all want to do everything we can to help those we love, but it cannot be at the expense of your own health. Please take time to breathe, relax, and you will be much stronger and able to help when you are most needed. I understand the slow mo' feeling. When I was first diagnosed, I felt like I was looking out my window, at the whole world still rushing onward, while I was on some weird merry go round, and trying to find a way to get off the dang thing! I found it amazing that life was going on for everyone else, while my world had just stopped. That was Dec. 2004, today I am in NED. Don't lose hope. I wish you and yours the best.

butterflytc

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