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You mentioned hospice and I think that would be a great idea at this time. If you find a good hospice provider, they can help in so many ways and your mother can stay at home! My wife’s hospice team included social workers, nurses, doctors, and home health aides and they were fantastic. They were so compassionate and also very talented. And, by the way, if your mother starts to improve they can always take her “off” hospice status.
Best of luck to you and your mother.
My wife (Kathleen) saw Dr. Steven Alberts at Mayo Clinic in Rochester. His phone number is 507-284-8964 and that will get you someone in the oncology department that should be able to help. We were very pleased with Dr. Alberts and I would highly recommend him.
BillMarch 6, 2008 at 2:23 pm in reply to: New to Board, to CC, that’s what they think I have now… #19354
This is what I found on the Mayo Clinic AZ web-site. I hope it’s not just marketing BS.
My wife, Kathleen, was blessed to have great insurance and no claims or treatment were ever denied. I find it tragic that receiving necessary treatment could be based on the ability to buy health insurance.March 4, 2008 at 8:36 pm in reply to: New to Board, to CC, that’s what they think I have now… #19349
Your insurance dilemna is unacceptable and the U.S. needs to fix this problem immediately (I will be scrutinizing the presidential candidates’ health care proposals carefully) . I hope this does not stop you from pursuing the right options for you.
If you go to Mayo-MN, I highly recommend Dr. Stephen Alberts or Dr. Lewis Roberts. I am confident you will at least have a better idea where things stand and at best have some viable options to treat your cancer.
Good luck.March 2, 2008 at 3:38 pm in reply to: New to Board, to CC, that’s what they think I have now… #19347
I wholeheartedly agree with all the recommendations to get more than one opinion. This is still a rare cancer and I believe it helps to find a clinic that has more experience with this diagnosis. On the other hand, after reading the posts over the years you realize every case is different and there are so many different options being employed today. You are in AZ so a trip to the Mayo Clinic in Scottsdale might be a good starting point or they may refer you directly to MN.
As far as the multiple tumors, my wife had that issue after she had two liver resections. She ended up being treated with Therasphere at Mayo Clinic and it worked very well for her. Maybe chemoembolization is also an option for you.
Good luck and I would say please keep pursuing different options until you find a doctor you trust who has a game plan you feel comfortable committing to.
I am not sure if you are from Burnsville, MN but if so, you may want to consider a trip to Mayo Clinic for a second opinion, if you have not been there already. You can check Kathleen Foley’s family blog for some information on the success she has had down there.
Best of luck to your mother and your family.
My wife, Kathleen, was 39 when diagnosed with cc 5 1/2 years ago. She has received a variety of treatments and she did have some good success with chemo a couple years ago. I believe Kathleen’s age and otherwise good health were factors in her success and that may benefit your sister also.
I hope your sister has favorable results with her treatment. Keep exploring her options and try to get other physician’s opinions. There are a lot more options now than there were 5 years ago and new treatments are continually being developed.
Best of luck to your sister and family.
This is a little shocking. Caroline’s post was one of the first things I read when I discovered this site a year or two ago. I guess I just assumed from her posts and her attitude that she would continue to beat this thing.
My thoughts and prayers go out to her friends and family.
I believe another board member (Nicole) had a family member who received the spheres in CA. You can look up her posts.
My wife had two rounds of Therasphere in four months and had essentially no side effects and very good results.
I follow your posts and many others but I am never quite sure what to say when bad news is reported. I pray for the best for you and your family.
Our experience has been that this disease is such a rollercoaster ride and that we often get more encouraging news after a round of bad news. I hope that is the case with you also.
Listen to this radio program!
Here is CIGNA’s position stating they will cover Therasphere.
Kathleen’s coverage is with a Minnesota health plan called Medica. I don’t know if they did an exhaustive study of whether to cover Therasphere but they did cover it. She had two treatments.
Keep fighting and good luck.
Kathleen celebrated her 5 year victory over cancer in September. I can’t tell you how many times she has heard she only has a few months to live.
To celebrate, our family is going to see Bruce Springsteen on Friday. I mention this because in 2002 I was at Best Buy purchasing his CD, “The Rising”, at the same time Kathleen’s doctor let it slip that she had cancer (he meant to wait until I arrived). Needless to say, I had several frantic messages and I make it a point never to miss any appointments now.
“The Rising” dealt with the 9/11 incident and aftermath and there is a song on the CD called “Waiting on a Miracle”. I listened to that song a lot back then and I also listened to another song called “You’re Missing”. Thankfully, we did get our miracle and we haven’t had to deal with the missing part.
Here’s hoping for many more miracles for all of you!
I did not address your insurance question. Y-90 was covered by Kathleen’s health plan so we have not had to battle with insurance. Do not take “no” for an answer and enlist your doctor to make the case that this is necessary treatment and the best option for your father.
P.S. If you look up Therasphere, ytrium, 0r Y90 under “search” on this site, you will find other discussions about this treatment.
My wife, Kathleen, had a couple Therasphere Y-90 treatments at Mayo Clinic. Prior to that she had two resections and a couple different rounds of chemo. The Therasphere was the least difficult and most effective treatment she has had.
Kathleen’s first Y-90 treatment was in October 2006 and the second one was February 2007. No other treatments were necessary during this period and she did start her next chemo until August. In other words, the Y-90 kept the cancer at bay for 10 months, with few side effects.
I strongly recommend Y-90. My initial understanding was that cc patients were not candidates and my wife was not considered until it was discovered she had a mixed cc-hcc tumor. I’m not sure that is the case everywhere though.
P.S. Kathleen’s story is included under the family blog section under Foley.