July 22, 2008 at 11:56 am #20938
I now have an appointment to see Dr. Alberts at the Mayo Clinic on August 14. Thank you all so much for the info and encouragement you gave me.
It actually doesn’t bother me to wait a few weeks– my CC has been very slow growing, and I try to spend as much time outside of “cancer world” as I possibly can. My current oncologist had already agreed to let me wait until Sept. to start chemo so that I could enjoy the summer. Now we’re planning to spend the time until the appt. up at my family’s summer cottage in Wisconsin, a place where I have many happy memories.
Many blessings to all of you!
KristinJuly 21, 2008 at 6:26 pm #20937saraMember
Kristin – that is unusual for Mayo to take so long. I would definitely call them back. Typically they can get you in very quickly.
If you ever decide to come down to Houston to visit with MD Anderson, please let me know. I can help get you set up with good housing options.July 21, 2008 at 6:21 pm #20936violarobMember
I really like the care I am receiving at MD Anderson cancer center in Houston. They are on the cutting edge of all treatments and clinical trials. They are very “fast track” for visitors out of state. Also, they are very comfortable with recommending a treatement plan and then having it implemented by the onco doc of your choice at home.
Good luck to you! I hope you find a doc who you trust, and gives you a good result.
Violarob in TexasJuly 21, 2008 at 12:39 pm #20935
Sara, thanks so much for the recommendation! I haven’t heard back from them yet (they said 2-4 days, and today is day 4) so I’m going to call again.
I had a really good weekend, went blackberry picking with a friend and sewed myself some new clothes in really bright colors, and I’m feeling more like myself again.
Thanks to all for your caring and support!
KristinJuly 21, 2008 at 1:00 am #20934saraMember
Kristin – Dr. Steve Alberts at Mayo in Rochester is fantastic, and is actively engaged in cholangio research. Regardless of who you see there, I would stress to that oncologist the approach you wish to take in your treatment, and let them know that you are not keen towards the more conservative treatment your previous oncologist suggested.
Please check back and let us know how it goes. All my best to you.July 16, 2008 at 5:53 pm #20933jeffgMember
HANDYMAN …. Dr. Nabbout. I’m going through the Veterans hospital as he is contracted to provided service once a week. His primary office I believe is at kansas Cancer Center in wichita, up by Via-Christi Hospital. He also works at remote sites. If you google kansas Oncologist his name and vita should come up. If you have trouble I’ll call my nurses at VA and get infor of where he provides services. He is going to be leaving on three week vacation starting next week. Another good Oncologist is Dr. Johnson at Kansas Cancer Center. I know he stays quite up to date on current protocals and trials. Hope this helps.
Jeff G,July 16, 2008 at 4:38 pm #20932handymanMemberJeffG wrote:Kristen … I started with resection of liver and gallbladder over nine years ago at Mayo in Rochester, Mn. They are a great teaching school of medicine in my opinion. Although my CC returned and mets all over My Oncoligist now in Kansas is at least up with the times and follows other major hospital protocals. He follows Sloan,kettering memorial and Mayo protocals primarily and he stays in touch with whats new coming out of the NCI. Excellent surgeons and Oncologist at both. It’s your choice young lady. Don’t rule out possible 3-D conformal radiation. Iv’e had what I consider two treatments on two different locations with positive results. wish you the best in your decision making.
Noticed you mentioned KS as your current treatment location. My wife, who has CC, is in KC and she is being treated by Dr Stephen Williamson, Oncologist @ KU Med.. At this stage all he has to offer is palliative in my opinion. It sounds as if you received some more in depth care. Who is your Oncologist and where are you receiving treatment?
Thanks for your help.
HandymanJuly 16, 2008 at 1:15 pm #20931devoncatParticipant
I bet you feel so much better having made that decision. Best of luck at Mayo.
KrisJuly 16, 2008 at 12:28 pm #20930
Thank you SO much for your kindness and support! After sorting through all your ideas, and talking with a doctor and nurse who are friends of mine, I’ve started the process of getting an appointment at the Mayo Clinic in Minnesota. They have several researchers there who have published interesting new work on CC, and their website says they treat 100 patients with CC per YEAR! Also, it’s a 5-hour drive from my family and friends in Wisconsin, where I grew up.
They’re supposed to call me back by the end of the week with an appointment date. I feel better already, knowing that things are in motion. Thanks for all your help.
Many blessings to you all,
KristinJuly 15, 2008 at 6:34 pm #20929devoncatParticipant
Let me second Carol on Dr. Sanoff. I only met her once but she was LOVELY. She is young and has loads of energy and is up to date.
KrisJuly 15, 2008 at 5:43 pm #20928carol58Participant
p.s. I forgot chemoembolization, radio frequency ablation. Charlie’s had ’em all.
CarolJuly 15, 2008 at 5:42 pm #20927carol58Participant
Kristin, if you can travel south, Chapel Hill, UNC Hospital is great and also Duke. We went to Chapel Hill for 2nd opinion last year and they did liver resection where Winston-Salem (where we live) said no. Our oncologist is Dr. Hanna Sanoff. She is wonderful! I’ve heard many good things about Duke Hospital close to Chapel Hill in Durham, NC also. Hope this helps. I know you’re already thinking this, but what about other chemo regimens or radiation or CyberKnife or Theraspheres. Charlie’s young at 52 also and we keep seeking out different options and treatments. Gemzar wasn’t very successful with Charlie, but a lot of people do good with it. Keep us updated on what you decide.
CarolJuly 15, 2008 at 3:11 pm #20926jeffgMember
Kristen … I started with resection of liver and gallbladder over nine years ago at Mayo in Rochester, Mn. They are a great teaching school of medicine in my opinion. Although my CC returned and mets all over My Oncoligist now in Kansas is at least up with the times and follows other major hospital protocals. He follows Sloan,kettering memorial and Mayo protocals primarily and he stays in touch with whats new coming out of the NCI. Excellent surgeons and Oncologist at both. It’s your choice young lady. Don’t rule out possible 3-D conformal radiation. Iv’e had what I consider two treatments on two different locations with positive results. wish you the best in your decision making.
Jeff G.July 15, 2008 at 2:27 pm #20925scragotsMember
I am in Indianapolis and I went to Indiana University Med Center at IUPUI in Indianapolis. My oncologist is very familiar with this cancer and where others just shook their head, she immediately said she would take out the tumor.
Now, I am not saying she would say that to you, but she seems to be very competent and is a fantastic person and IU Med is an excellent teaching facility. I had my resection in 01/2007 and…so far, so good!
Your doctor needs to refer you to IU Med. I assume your primary care physician can do that if you do not want your current oncologist to do it.
Her name is Mary Maluccio.
Best of luck!
SueJuly 15, 2008 at 2:16 pm #20924wabalsMember
Johns Hopkins is super! Our oncologist is William Sharfman, our surgeon is Michael Choti. My husband had failed surgery 1 yr. ago somewhere else. Then we went to Hopkins. What a difference! I have a MSN so I am hard to please but I could not be happier.
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