October 17, 2014 at 4:50 am #85134dukenukemMember
Once I get a report I will share it.
One thing that Dr. Alberts recommended was that the analysis by FoundationOne should perform both the solid tumor panel AND the hematology panel. The second one will check for FGFR4 which will be of use in determining future treatments.
BTW – this is another of those post-treatment nights where I have trouble getting to sleep. I think my cat has even given up getting me to go to bed.
DukeOctober 16, 2014 at 3:25 am #85133marionsModerator
Duke….so glad it went well for you and thanks much for the descriptive report. Is nice to know that all are in agreement with your next plan of treatment and that further communication is established. Great.
Would you care to share with us the specifics of the genome testing mentioned?
I also wanted to share that Dr. Alberts was the first member of our Medical Advisory Board (2006) and to this date is actively involved with our foundation.
MarionOctober 16, 2014 at 1:09 am #85132iowagirlMember
Duke…..one additional thought to add to your list of things you’d do differently. When we were there in Feb, 2014, we stayed at the Kayler Grand Hotel, right across from the entrance to the clinic. We were checking email, etc on the hotel’s computers, located in the main lobby…looking for possible air flights for our son to come to Rochester to be there in time for my surgery the next day. However, the prices into Rochester were really expensive compared to other locations. The guy next to us told us about another alternative. He said the best cost option was still to fly into Minneapolis and then take a bus service straight from there to Rochester. The Mayo concierge probably has the name of that bus service, but it is strictly into Rochester and dirt cheap. It made a huge differential in cost between flying into Minneapolis as opposed to flying into Rochester. Also, the distance to the Rochester airport to the main Rochester area is quite a ways and the taxi fares get very expensive. The guy who told us all about this goes to Mayo every year for checkups and whatever is ailing him….and has used the bus service himself. When we were in the hotel, he pointed out that there was a small office right there for the bus people…to make arrangements.
I’m soooo glad to hear about your appt with Dr Alberts and his NP. I will see how this next appointment goes with my oncology fellow there and maybe make a change as time goes on to Dr. Alberts. I know I”m not in the same situation as you are……as right now, there is nothing for me to do but live life and wait…..nothing to treat or decisions to make about treatment options. But, I also don’t want to miss doing something we should be doing I do know I”m not the ONLY CC patient my onc has at Mayo and I do like him, but then, Dr. Alberts is in a class above.
Julie T.October 15, 2014 at 7:43 pm #85131gavinModerator
Thanks for that Duke.
My best to you,
GavinOctober 15, 2014 at 4:00 pm #85130lainyMember
Duke, many thanks for that fine report on Mayo. One thing I also got out of your post is that a patient must feel so secure there. I am really amazed at Dr. Albert’s nurse practitioner and I love that they both knew about our CC Board. Stupendous post, thanks so much.October 15, 2014 at 3:28 pm #10657dukenukemMember
I had blood work done on a Wednesday at the Mayo Clinic. One thing you need to remember is that some of the results may be dependent on the machines performing the analyses, so the results may not be directly comparable to those from your “home” clinic. CA 19-9 comes to mind. Mayo also has a way to set up so that you can access your results from your computer. I did not have to have a CT scan since I had had one a month before my visit. If you don’t have a recent one, they may schedule one for you there.
Thursday I came back. Check in was smooth. Stayed on schedule. After the required height and weight measurements (and birthday confirmation) waited maybe 15 minutes and met with nurse practitioner. She was great. Knowledgeable. (I was impressed that both she and Dr. Steven Alberts knew of our site and the discussion boards.) She opened with a leading question and I got on a roll. I love to tell stories and I had a captive audience. I had a question about an item from my CT scan report. She brought up the first and last scans and showed me what the item meant. NOTE: Even though they ask you to bring only the last three scans, I suggest you bring them all you have. Better to have too much info than say, “If only you had brought one more thing.” Since it all on DVDs, it’s no big deal.
She left and talked with Dr. Alberts for a few minutes. After he came in we chatted for a few minutes then got down to the reason for my visit. He agreed with the revised treatment plan of going back to what worked (carboplatin and gemcitabine) since I had tolerated it well and was a first line treatment. (My onc here had planned for me to go to FOLFOX6 which is a second line treatment. I thought she had given up too early and disagreed with that approach. She and I eventually agreed to go back to carbo/gem.) So, everyone was in agreement with my next series of chemo treatments. Dr. Alberts then brought up what possibilities existed after the carbo/gem had run its course. This is where his knowledge really came out. Things he had in mind were not even in my onc’s world. We discussed the option of clinical trials. We also discussed genome testing and how it might help (something my onc mentioned only after she had been treating me 14 months). He said that it was important that a certain test be performed which was not in the normal plan. We ended by agreeing that I would keep sending him updates, especially the results of the genome testing. When it looked like a treatment change might be required, he would review everything and discuss with me and my onc. Probably could be done over the phone.
Dr. Alberts is confident that there will be a major breakthrough in CCA treatment in a few years. Probably in using existing treatments from other cancers in treating CCA. That’s where the pharmas can get the biggest bang for their bucks. Follow the money.
Mayo Clinic is HUGE. The main campus takes up about six blocks. The second campus takes up a few more. And that is just downtown Rochester. It has an underground tram and above ground skyways connecting buildings. Over 34,000 people work there. The public rooms, like the entrance and waiting areas are beautiful, like a fine hotel. Marble and wood. Possibly leather chairs (definitely not fabric).
Things I’d do differently in travel and lodging if I have to go back.
1. Fly to Rochester instead of Minneapolis. Try to avoid a layover in Chicago.
2. Find motel with airport and Clinic shuttles to avoid paying for car rental (make sure there are restaurants within walking distance).
3. Get a reservation that allows changes without paying extra. I stayed an extra day in case they wanted more testing. But it would have been expensive to change flights after they were booked.
4. The Mayo Concierge service can help with all that – just call them.
Things Mayo could improve:
I completed some forms twice. One set said to send back in 7 days; other set said to bring with to consult.
Have patients go right to 10 South Gonda (oncology center), not to Admissions.
They take a picture of you to enter into your file for security. That is done right next to Admissions at Window 18. Stop there first if the line is short, otherwise go to 10 South Gonda first.
Mayo Clinic is a top shelf institution. People are knowledgeable. They exude confidence. They are calm and reassuring to patients. Professional and kind. They know why you are here and act accordingly. Not syrupy sweet, but understanding. You get the feeling that you are in good hands.
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