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
Tuesday, August 10, 2010
Green Lake and more
So much to update... I guess I'll start where I left off:
The rest of our time at green lake was great. Carly swam so much while we were there. She always wanted someone to go swimming with her. She had no troubles jumping in and swimming around, unlike the rest of us who found the water a little chilly and the entry a little nerve racking. Andrew also took to the water like a fish. He liked being able to walk in and play around at his own pace. He also enjoyed pushing the boats around and throwing rocks for the neighbour dog Bucca to fetch. I had a great time sailing and I even managed to convince Andrew to come with me on a couple of occasions. It was definitely a relaxing place to spend time and I hope we can make it there again next year.
After Green lake we headed to Comox and spent the BC day long weekend with Dave and Ashley (and their son Levi) at their new mansion. Their place is beautiful with enough bedrooms for us all to have our own with a few left over. It was very convenient that we could also leave our trailer in their driveway while we were there. We managed to spend some time on the beach, go for a bike ride, attend 'Nautical Days' in Comox, rent a suit for the forthcoming wedding and belt out a few classics songs on sing star. Thanks for having us guys, we'll see you in a week. We also managed to see Dave and Katy and the renovations they're doing to their house. The last time we saw it their house was gutted and they had grand plans. This time they had a new hardwood floor in and all the cabinets and counters installed. It all looks amazing. Can't wait to see the final product!
Following our sojourn in Comox we retired to the Tutt estate in Sidney. The kids were tremendously happy to see Granny and Grandad and were excited about all the benefits of having two extra doting servants to facilitate their every want. We figured that since we were planning on being in Sidney for a couple of weeks we coupled put the kid lets in swimming lessons at the local pool here. So Penny booked them in online and the classes couldn't be better. Carly, after her daily swimming excursions at the lake, was keen to get back in the water. She was a little apprehensive at first about her quiet muscle-bound teacher but that was soon forgotten and she hasn't looked back. Andrew is thriving as well. He is so proud of his swimming and knows his teacher by name. He loves to show off his newly acquired skills in the bath at night which can be messy for the bath supervisor. They are both excited that Uncle Matt is coming over on Thursday to watch their lessons. You don't know what you're in for Uncle Matt!
The next excitement in our vacation was a trip to the Mayo Clinic in Phoenix. I'll sum that trip up in the next entry so stay tuned!
Tuesday, August 3, 2010
Mayo Clinic Here We Come
I mentioned previously here that we were looking into travelling to the Mayo clinic in Phoenix to get a second opinion about my treatment options. Well, things have finally fallen into place and we have an appointment Thursday morning in Scottsdale. I think I finally got all my paperwork, films, scans, slides and other assorted pertinent medical data out of the vault at the Foothills hospital and sent off to the clinic in Phoenix. I haven't talked with the doctors there yet but they seem to be much more efficient at moving patients and their data around than we are here in Canada. Penny and I fly out Wednesday afternoon and return late Friday just in time to make it to Dave and Katy's wedding in Nanaimo on Saturday. After that we will either be bound for Calgary for chemo next week or back to Phoenix for more testing and treatment. It will be a busy time but we're looking forward to possibly getting more answers, having fun at the wedding and, well we're not looking forward to chemo but it has to be done...
I will provide an update on our travels since Green Lake as time allows. We have a 3 hour layover in Seattle tomorrow so that should be the perfect time!