Our trip to the Mayo Clinic in Phoenix last week went very well. While we did gets lots of great information, there were no great revelations and overall my prognosis remains the same. The doctor I saw there had taken some time to review all my medical records (I had the Foothills hospital send her 300+ pages) and all my scans. Overall her first impression was that I had recieved outstanding care in ALberta at the Tom Baker Centre and that there was nothing they would have done differently had I been treated there. It was a tremendous relief to hear that from an independant professional. While Penny and I had the sense that we were recieveing good care it's always a relief to find that your feelings are shared by others, particularly others in an objective professional position. So while there were no major changes to be made she did suggest a few things to look at going forward.
Her first suggestion had to do with my chemo regimen. The current plan here is to do 12 two week rounds of FOLFIRI + Bevacizumab. FOLFIRI consists of 3 drugs (FOLinic Acid (leukovorin), Flourouracil (5-FU) and IRInotecan) which are given once every two weeks with the Bevacizumab. Dr. Carlin (the oncologist at the Mayo) suggested I could drop the Folinic Acid and 5-Fu portion of that regimen and just go with the Irinotecan and Bevacizumab. Her reasoning was that the 5-Fu (and the Folinic Acid) are probably not doing anything and contribute an undue amount of side effects to the whole process. She suggested a regime that would include a weekly dose of just Irinotecan and Bevacizumab for four weeks straight followed by two weeks off. The dosage of the drugs given on this schedule is lower, resulting in fewer and less intense side effects and thus a generally happier existence for the patient. When I discussed this option with Dr. Lupichuck (my oncologist in Calgary) she was on board with the idea and said that she had done that with a few patients of hers in the past. But she did say there was one catch... Bevacizumab is a new (and expensive) drug that is used in the treatment of colon cancer. It is only recently (in the last 12 months?) that this drug was approved for use and funded in Alberta. The problem is that it is only approved for use on patients who are also getting Fluorouracil (5-FU). The way their funding approvals work if a patient is not recieving 5-FU then they are not covered for Bevacizumab. Dr. Lupichuck said she would try to push it through without the necessary 5-FU but she wasn't sure that it would work. I could just pay for the Bevacizumab myself but that's not really an option since it's way to expensive and I could just get it for free with the 5-FU.
Dr Carlin's next suggestion was that look into getting KRAS analysis done on my tumor. I don't really understand the biochemistry involved but I'll see if I can simplify it for the purposes of this short discussion. KRAS is a protein that exists on the cell membrane that is involved somehow in transmitting signals into the cell. There are some chemotherapy drugs that can use this pathway to slow or shut down cellular reproduction by blocking this pathway. But in the rapid growth and reproduction of cancer cells, sometimes this KRAS protein/pathway becomes mutated. Unfortunately only cells that have an unmutated KRAS pathway (call a wild-type pathway for some reason) will respond to the chemotherapy. When I talked about this with DR. Lupichuck she said that testing had already been done on my tumor. Unfortunately my tumor has a mutated KRAS meaning that the chemotherapies for wild-type KRAS will not work for me. Dr. Lupichuck did say that there was a phase one clinical trial coming up that I may be able to participate in but the details and timing have yet to be worked out.
As a last ditch effort down the road Dr. Carlin also suggested one other thing we could try called target analysis. This is basically a trial and error experiment where samples of tumor are subjected to various chemotherapies and the outcomes recorded. Any that appear to have an adverse effect on the tumor cells may be given as a course of chemotherapy. Target analysis is not done often (I don't think it's even offered in Canada) and is "very expensive" but when all other avenues are exhausted it may be something to consider.
So, while our trip to the Mayo didn't yield any silver bullets, it did provide us with a solid second opinion and some different things to try out down the road. I can't emphasize enough the peace of mind that has come from obtaining an independant, objective second opinion. Thanks again to all of you who participated in the auction or who contributed in other ways. Your generous donations paid for this trip, and provided us with some peace of mind. Thanks again.
Besides the hospital time in Phoenix we also managed to take in a Dbacks game and do some shopping. Penny got a fantastic dress (for $12.99!!) to wear to Katy and Dave's wedding, I got some shoes and the kids got bathing suits. It was too hot to do anything else (114 deg F). How do people live there in the summer?
Friday, August 13, 2010
Mayo Clinic
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3 comments:
You have not only provided peace of mind for yourselves, but for us too.
When Daryl was first diagnosed, we asked our oncologist about getting a second opinion at the Mayo Clinic. He told us we can do what we wanted, but he guaranteed us that they would tell us the same things he had. He suggested we save our money and go on a nice holiday together. Ever since then, we have always wondered if we had been treated similar to what the Mayo would have done. Reading your message, it sounds like both institutions are on the same page. Doesn't change the outcome, but at least you/we know they're doing everything they possibly can to help. Cheers! Daryl and Jan
Hi Dan & Penny,
FYI "Wild-type" is a term from genetics that refers to the most commonly occuring type in nature. With the KRAS pathway, the most common type is one that does not have any mutations and this is called the wild-type.
(Or at least I think that's how it goes, I took Genetics more than 10 years ago now...)
I'm really glad that you can now be sure that you have received the best possible treatment at the TBCC.
I hope Dr. Lupichuck can get the costs of the Bevacizumab covered without difficulty and that you will indeed have fewer side effects with the upcoming rounds of chemo.
Thanks for keeping us posted about this very eventful summer. I hope the remainder of it has many wonderful times in store as well!
:) Shannon
Hi Dan,Penny and kids:)
I hope everything going well with you guys and have a wonderful summer. Please keep posting with updates info.
If you need any help around back to school time or anytime let us know.
MS
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