May 1, 2011 at 2:48 am #48395
Randi, you know how happy this makes me, I just answered your email. But I will repeat: MAZEL, MAZEL!!!!!!!!!!!!!!!!!!!!!!!! Just doesn’t get any better than this.May 1, 2011 at 2:27 am #48394
I am not sure I posted the results of my current scan here. My local Oncologist didn’t see anything that they had seen on the scans before! I decided to keep my appointment at the Mayo Clinic anyway, just to get a second set of eyes on me.
So…I am just back from the Mayo Clinic and good news…they read my scans and biopsies and agree with my doctor here that everything is looking good! There is no evidence of anything in my liver and the last scan was just THAD (transient hepatic something or other). This just means that what they saw on my last CT/MRI was just a transient thing and they didn’t see anything on my current MRI scan.
The Mayo Clinic is an amazing place…a well oiled machine where the staff has everything so under control and they are so thorough. I am so glad I went because it just reinforced the good results of my last scan. The other good thing is I have doctors there that will read all my future scans (along with my local oncologist/radiologists). That is a really good feeling for me.
Marion: You were right about Dr. Grothey…he is a very caring doctor. he is probably the first doctor who has looked me in the eye and asked how I am handling all of this. Very caring.
I stayed at the Kahler and loved it…easy access, clean rooms, a hotel with history…i love that!
Kathy: I hope things are going well with you.
Lainy: You know how much your support means to me!
My greatest wish is that everyone on this site could feel as good as i am feeling right now! Thanx for all the support!!March 22, 2011 at 11:35 am #48393
Randi – I understand completely. Keep us posted on the Mayo visit and positive thoughts coming your way – NancyMarch 21, 2011 at 11:08 pm #48392
Randi, don’t underestimate yourself, you have the ‘moxie’ that is required for CC. If you feel up to 80% most of the time that is btter than most people who are healthy! Keep up the good work Randi girl.March 21, 2011 at 10:51 pm #48391
Well Nancy, I wouldn’t say my doctor is not concerned. He doesn’t know why I have inflammation and mentioned the possibility that they did not “hit” the spot with the needle biopsy. My husband asked him how large an area they were trying to hit and he said 2.5 x 3 cm of ‘area’ that didn’t look like a tumor. My husband contends that anyone doing that job all the time should be able to hit an area that size.
I am trying to stay positive and for the most part I am, but I have moments, like today when i had a little indigestion and imagined a ‘sore’ spot on my abdomen. It really brings me down and i get really anxious. But I would say 80% of the time i am really upbeat and don’t dwell.
I am going to make my reservations for Mayo tomorrow (thanx Lainy and Cathy for your suggestions. I have requested all of my records, so that is done.
I want to enjoy my days and put this on the back burner for a few weeks….we shall see if that is possible.
All you guys are great and while I try not to come to this site too often (it makes me anxious to see bad news) I am so heartened when I see that someone has replied to my posts! it’s a push/pull thing for me!
Hugs to everyone and hears to good health all around!
-Randi-March 21, 2011 at 8:09 pm #48390
Ray – Sounds like you are holding your own and, since your doc is not concerned, I think you should remain positive. Thanks for the good news….NancyMarch 21, 2011 at 7:30 pm #48389rayloguMember
I have had a CT report of a cyst on my liver since ’07 and had the whipple 5/2010. most recent MRI this month still shows cyst on the liver and doc seems not concerned, even though there is now evidence of some fluid in the area of the cyst. The MRI shows everything else looking good.
RayMarch 17, 2011 at 9:12 pm #48388cathy_aParticipant
Randi, make your return flight on Friday and the last flight. Because so many people leave for weekends (Mayo staff) that if you make your return flight on Thursday, you will not be able to fly standby on Friday because it is over booked.
I have been flying every week from Chicago every week and the tickets run over $500 because I never have an advanced purchase. BUT I keep reminding myself that you can not put a price on health and especially CC.
Because I have flown so much, I immediately learned that the airline staff in Rochester understands patients do have appts that cancel or finish earlier, so I have never been charged a penalty in Rochester. But remember that they are very small planes and only delta & american go there. Now another option is fly into Minneapolis and take the scheduled bus which is only 90 minutes away. Hope this helps….
Tests finished today and flying home tomorrow am. Learn all my results on Tuesday.March 16, 2011 at 7:17 pm #48387
Randi I just retired from 40 years as a travel consultant. Hotel reservations can be changed easily. Make them directly with the hotel if you don’t have an agent. The airline will give you the lowest fare but there would be a penalty for changes. Honestly its up to the reservationist you get and if you explain the situation if you call to change the return you may get a ‘nice’ agent who will just change it for you, no fee. If you call on your own, hotel and car reservations can be changed easily with no penalties.March 16, 2011 at 5:31 pm #48386
Thank you all for your responses and I hope I hear from more people as time goes by.
Marion: It’s nice to know that Dr. Grothey is so well thought of and you know him personally.
Cathy: You have a lot on your plate and I am so grateful that you took the time to give me all the information you did! I hope your tests all go well and you are a surgical candidate. I hope you live close to the Mayo and haven’t had to travel for hours to get there (4 weeks in a row!).
Lainy: I will keep you posted on what happens at the Mayo (and here for that matter). Thank you for the kind words of support.
Nancy: I am hoping that the Mayo is the well-oiled machine that I have heard it is and that I can see the people I need to. And April in MN sounds much more appealing then December in MN!
How have people handled making plane/hotel reservations? They say I could be there from 1 to 3 days and I am not sure how I should plan for this.
Thanx again everyone!
-Randi-March 16, 2011 at 3:22 pm #48385
Randig – My son was seen by Dr. Grothey at Mayo Clinic. He was a very supportive doctor and searched every option for him. Best wishes — Mayo is very organized and easy to navigate. We were there in December 2009 so it was minus twenty degrees outside! Hoping you will find MUCH warmer weather…..NancyMarch 16, 2011 at 1:15 pm #48384
Cathy, I didn’t know you also have colon cancer, 2 CC’s to deal with and a plan D. You are wonderful and an inspiration for others. I also wish you much good luck at Mayo. Too bad you and Randi don’t cross paths there. Take care and I will be waiting to hear the results.March 16, 2011 at 1:11 pm #48383
Randi, you are terriffic! I am so glad you got in to Mayo. I picture CC cowering at the thought of Randi taking more action. I am just so proud of you! You know I wish you everything positive!March 16, 2011 at 4:44 am #48382cathy_aParticipant
Hi Randi, congrats on your MRI!
Tomorrow I leave for Mayo (MN) for the 4th week in a row… more tests… After 2 doctors/2 hospitals at home, I called Mayo Clinic. The first doctor (oncologist), told me that there was no cancer on my liver or anywhere. But he decided that he needed more tests. The next week, I get more tests and then meet with Dr Rao and Dr Sanchez and and find out that I do have cholangiocarcinoma but it is not near the liver and can be cut out. (And they think I have colon cancer also.) So I leave tomorrow for a few more tests and then on Tuesday I go back and I meet with the doctors and surgeons for a game plan. But they were very blunt and if the tests show I have cancer on my lymph nodes, they can not help me. (I have Plan D ready).
What impresses me the most with Mayo Clinic is that there are hundreds of doctors in each category and they talk and consult with each other. (Mayo employs over 33,000 people in Rochester only)
I have stayed at many hotels, but stay at the Kahler Grand, which is across the street from the hospital and clinic. They have a cheap rate for $79.00 and it is worth the convenience.
Good luck with your appt and keep us posted!!March 16, 2011 at 4:35 am #48381marionsModerator
Randi….You will be in good hands with Dr. Grothey. He specializes in GI malignancies, in particular, colorectal cancer, unknown primaries, and neuroendocrine tumors. And, yes I know him personally and have attended several of his presentations at various medical conferences. Good luck and please, keep us posted. Oh, I also wanted to mention that the google function (top of page) will lead you to numerous threads regarding the Mayo Clinic. But, most likely others will come along and enlighten you also.
All my best wishes,
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