Anyone with CML on Vancouver Island?
Posted 02 June 2011 - 05:05 AM
Welcome! You've found the right place for excellent advice.
I'm sure you're going through all sorts of emotional and even physical turmoil right now, so it would be very helpful for us if you could be more specific as to what, in particular, you're looking for advice on?
Years ago, when visiting my sister in Vancouver, my husband and I took the Ferry from Horseshoe Bay to Nanaimo and drove across the island to Uclulet and spent a couple of days exploring the western coast of your beautiful island.
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 02 June 2011 - 11:19 AM
Thanks for responding Trey and Pat. I was hoping to find someone in my area that could help me understand and navigate sources of support here on Vancouver Island. I am thinking of moving from my hemotologist to a cancer treatment center and would like a patient from the island to chat with. My hemotologist seems over burdened by his caseload. He literally had 2.5 minutes to spend with me during my last vist. He prescribed Gleevex and gave me no information on how to fill the prescription. We can't get it filled at a normal phamacy. We have to access the BC Cancer Agency. The lack of information made for a very tense day for me and my family. Parksville is considered a rural community and the cancer treatment center is much further away from where I live. I was wondering if it would be worth it to change my care to their facility. I plan to bring this option up with my family physician, but I would like a patient's point of view.
I truly appreciate this venue. I was hoping it could help me find someone local with CML. Access to care is very different from the States to Canada, from community to community.
Posted 02 June 2011 - 01:59 PM
Welcome, I am so glad you found this site. I live in Calgary but lived in Victoria many years ago. I miss the island and still fly out about once a year. I am sorry that I cannot be much help with resources in your area but just want you to know that for many things, this site is also a wonderful resource. I do understand the need for more knowledge of what is around you locally. I am sorry your doctor is not being a great support and I hope you can find a physician who is both familiar with cml and also acknowledges the emotional side to this, which for me, was harder than the physical stuff. I wish you the best!
Posted 02 June 2011 - 09:18 PM
Hi Paula: So glad you reached out to us for advice or anything else you may need. Even if you do not find someone close by to help you out, we are always here for support. You have people from all over the place, and it does not matter where you live. We all run into different problems, even those who live in big cities with lots of resources for care.
I always say that it is important to be sure you have someone who is experienced in the treatment of CML, and I do not think I would want a doctor who is so overloaded that he can only give me 2 minutes of his time that I am paying for.
As for my Gleevec, I get mine through a Specialty Pharmacy mail order through my husbands insurance plan. Check different things out that will benefit you to get your medication.
Try not to get overwhelmed with everything. It all falls into place, as soon as you know more and know where to go for whatever you need.
There is always someone on here to answer your questions at all dfferent times of the day and night. Just post any questions you have, and someone will certainly answer you by the next day if not sooner.
Again Welcome to our group. Keep us updated on how your doing.
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