I haven't been around for a long time but all is well - in fact great - with me. I finished my final Herceptin treatment this Tues so now I'M DONE!!!! It was an emotional time in the clinic where I seem to have spent so much time since early 2008 - glad to say 'goodbye' but I hope my only visits any time in the future are as a volunteer!
It sure was a special summer with Kathleena and Chris getting married Jul 25th, our beautiful new Granddaughter Olivia Lily was born to delighted parents Andrea and Dylan and then Kathleen and Les amazed me by completing the entire 60km Weekend to End Breast Cancer walk - and raised more than $3,000.
When I saw the Dr. she advised me that I was eligible for the Neratinib trial! I've spent the last few days reviewing the Consent Form for the main study titled: 'A Randomized Double-blind Placebo-Controlled Trial of Neratinib (HK1-272) after Trastuzumab in Women with Early Stage HER-2/neu Overexpressed/Amplified Breast Cancer' (whew). The trial was just authorized to begin in Canada this week (authorized by Wyeth which was just bought out by Pfizer to get access to this drug!) and will involve 3850 subjects worldwide. The study is being done to:
1. Find out if neratinib helps to prevent your cancer from returning, or if it helps to delay the time until your cancer returns.
2. Find out how neratinib affects overall survival.
3. Learn about how neratinib affects the occurrence of brain metasteses.
4. Learn about the safety of neratinib.
It's a Phase III trial that will involve a 50/50 drug/placebo randomized study group. You'll take 1 pill per day (actually they're 240mg and will be split into 6x40mg pills) for 1 year. I'll have a diary to keep track of any side effects (diarrhea seems to be the most common one but can be controlled with Imodium) and fatigue (I'm used to that with the Herceptin & Arimadex!). The study will be one month for screening, 1 year for study drug and 4 years for follow up). Lots more if anyone wants any further information. The Study code is 3144A2-3004-WW if that helps anyone.The hospital where I've received all my treatment (Southlake Regional Health Centre in Newmarket, Ontario) has been chosen as Ontario's site which is great since it's only 1/2 hour from home. I know all the Drs and nurses in the clinic so that's great too. Part of my bittersweet feelings will ending treatment was that, after being under the microscope for the past 18 months, finishing was a bit scary since I knew someone wouldn't be monitoring me every 3 weeks any more. Kind of like being sent home with the baby and wondering how you'll manage on your own. I am absolutely committed to research as the only way to find out the next great thing and this study has no, obvious, negatives so why would I not want to participate?As k4katz says, you always run the risk of just getting the placebo, but the Research Director answered my question and advised that precedent had been set with another drug should Neratinib show better than expected results during the trial - in the previous study, it was 'unblinded' and all participants that received the placebo were given 5 years free access to the drug... good to know!
My plan is to review all the info, head to our place in South Carolina for a holiday in November, get through Christmas and start in January. It's especially important after finding out this weekend that one of our friends just passed away from brain/bone cancer and another lovely friend has just been rediagnosed and is starting chemo again. It's for people like her that the research must continue! I'm very grateful and feel blessed to be part of this trial. Bless you all for continuing to support me and others you know that are facing or have faced this horrible disease.
Better and worse at the same time...
I'm better, much better, in fact back to as close to 'normal' as I ever was. Energy is still a bit low but that's par for the course for the first year I'm told. Back at work, busy renovating and getting ready for Kathleen & Chris' wedding in July. Enjoying the grandbabies immensely but I forgot how busy it is with little ones around! Rion and Emy were here for the weekend a few weeks back and Nana needed a vacation when they went home!
The 'worse' part is just because 2 close friends have been diagnosed with cancer - a very dear friend with breast cancer back in December and the other a good friend with aggressive bone cancer less than a month ago. They can't find a cure for this insidious disease soon enough, that's for sure. Both my friends are responding extremely well to treatment, but it still sucks. A few extra prayers for them please.
The 'worse' part is just because 2 close friends have been diagnosed with cancer - a very dear friend with breast cancer back in December and the other a good friend with aggressive bone cancer less than a month ago. They can't find a cure for this insidious disease soon enough, that's for sure. Both my friends are responding extremely well to treatment, but it still sucks. A few extra prayers for them please.
Racing to the finish line!
I'm getting very dilinquent at keeping up with this but I suppose that reflects that I'm busier and don't have as much time as I did to loll around and be creative. January went by in a blur after Christmas and then heading south to Pawleys - a wonderful break from the snow and cold and the chance to visit some new places and get back to some old favourites. My biggest disappointment was that the new spring fashions hadn't arrived yet in my favourite stores so my hope to find a dress for Kathleen's wedding evaporated like one of the Charleston ghosts. Oh well, I'll be back with 'the girls' (Nella, Judy and Kim) in April for a whirlwind trip that will include the fantastic St. George Winyah Plantation Tours as well as some good food, good wine and power shopping. Nella will make sure that we don't sit for long as long as the stores are open! The Plantation Tours are one of my favourite things - for 2 days private and public historic homes are opened for viewing. Some of these private homes have been in the family for several hundred years, lovingly restored and are absolute showpieces. I've always said that if I could go back in time I'd live in the South before the Civil War - and be rich of course! I'm sure I'd just look fabulous in a hoop skirt gliding down one of those magnificent staircases to meet my 'Rhett'. Dave, however, might look pretty goofy in knee breeches and a fluffy necktie!
As for my health, all is progressing better than I'd hoped. I did have my surgery (simple mastectomy) the end of January. They pumped me full of non-narcotic pain pills before I went in which is the anaesthetist's option which, apparently, makes you need less high power pain medication when you come to. I do remember that this time it took me much longer to get out of the 'fog' after the surgery and I literally couldn't keep my eyes open until about 11pm that night. I was out of the OR by 12:30 but don't remember much. Sara was there and Dan, Laurie and the kids (and Steve the dog) dropped by, made and ate dinner and I do remember there was an awful lot of hilarity and good smells wafting up the stairs, but it's all a blur. Despite a scar the size of Texas, I'm a good healer and have had no issues so far other than some expected achiness and 'twingey' pain as it heals - nothing that Tylenol won't fix. I had my surgical followup last Thursday and got my pathology report back which was great - no more malignancy - woohoo! There were however, lots of other things like fibrous tissue etc that could have caused me problems in the years to come so I'm happy with my decision and will now adjust to being lopsided and wearing an 'aftermarket' part to balance myself out.
My hair has grown in to the point that I will actually be seen in public without the wig or a hat and my eyebrows and lashes are slowly following suit. Once I have eyebrows and can wear mascara again, life will be great! Now that I'm feeling good again I've managed to do some long overdue Nana-sitting in both Cayuga and with Emily. Wow, you sure forget how busy 5 month olds and 2 year olds can keep you but it was great fun to spend more than an hour with them. I'll be getting back to work soon and am looking forward to that for sure. I'll be on an every 3 week injection of Herceptin until about October and a daily hormone therapy pill for 5 years but whatever I need to do to minimize my risk of recurrence is fine with me - the statistics on both these drugs are great. My daughter and niece have formed a team for the Weekend to End Breast Cancer in September and we're all looking forward to participating in that. I'd better start some training or I'll be lucky to do 6km let alone 60!
I'll keep posting with any interesting updates but thanks to all who've been following along with me on my journey and if you get the chance to sponsor someone in the Breast Cancer walk, you can be assured that everyone like me is truly appreciative of all the dollars that go into new research, drugs and treatments to beat this insidious disease. Bless you all!
As for my health, all is progressing better than I'd hoped. I did have my surgery (simple mastectomy) the end of January. They pumped me full of non-narcotic pain pills before I went in which is the anaesthetist's option which, apparently, makes you need less high power pain medication when you come to. I do remember that this time it took me much longer to get out of the 'fog' after the surgery and I literally couldn't keep my eyes open until about 11pm that night. I was out of the OR by 12:30 but don't remember much. Sara was there and Dan, Laurie and the kids (and Steve the dog) dropped by, made and ate dinner and I do remember there was an awful lot of hilarity and good smells wafting up the stairs, but it's all a blur. Despite a scar the size of Texas, I'm a good healer and have had no issues so far other than some expected achiness and 'twingey' pain as it heals - nothing that Tylenol won't fix. I had my surgical followup last Thursday and got my pathology report back which was great - no more malignancy - woohoo! There were however, lots of other things like fibrous tissue etc that could have caused me problems in the years to come so I'm happy with my decision and will now adjust to being lopsided and wearing an 'aftermarket' part to balance myself out.
My hair has grown in to the point that I will actually be seen in public without the wig or a hat and my eyebrows and lashes are slowly following suit. Once I have eyebrows and can wear mascara again, life will be great! Now that I'm feeling good again I've managed to do some long overdue Nana-sitting in both Cayuga and with Emily. Wow, you sure forget how busy 5 month olds and 2 year olds can keep you but it was great fun to spend more than an hour with them. I'll be getting back to work soon and am looking forward to that for sure. I'll be on an every 3 week injection of Herceptin until about October and a daily hormone therapy pill for 5 years but whatever I need to do to minimize my risk of recurrence is fine with me - the statistics on both these drugs are great. My daughter and niece have formed a team for the Weekend to End Breast Cancer in September and we're all looking forward to participating in that. I'd better start some training or I'll be lucky to do 6km let alone 60!
I'll keep posting with any interesting updates but thanks to all who've been following along with me on my journey and if you get the chance to sponsor someone in the Breast Cancer walk, you can be assured that everyone like me is truly appreciative of all the dollars that go into new research, drugs and treatments to beat this insidious disease. Bless you all!
I'm grateful (very) but not gracious....
Happy New Year everyone. I hope everyone had a lovely holiday with family and friends and had too much good food, good company and good hockey - yea Juniors! As you can see from my heading, I've figured out my dilemma - I am very grateful for everything that has happened over the past 6 months. For the great doctors, our wonderful healthcare system that doesn't cause you a moment's 'how will I pay for this treatment' worry, to my extraordinary family and friends that have supported me along the way. I'm grateful that I'm beginning to feel better with some minor issues that will work themselves out in time. I'm grateful that I am scheduled to go back to work in March and have firmly determined that, without major changes to my lifestyle, I am NOT a homebody. I'm grateful that I have a wedding to plan and occupy my time and bank account for the next few months! I'm just generally grateful for everything that has assisted on my path to recovery. However, and it's a big however, I do not seem to be very gracious. I read all these wonderful stories about other women with breast cancer that continue to work through treatment, take their kids to hockey, start marathons, start charitable foundations, start websites for other women, participate in regular workouts and training programs and generally make the world a better place - despite chemo, surgery, radiation etc. That's certainly not me. I've been grumpy, sick, depressed, argumentative, clingy, needy and extraordinarily good at putting on a courageous face to everyone outside my own little nest. I've accomplished nothing other than cleaning some closets and cupboards, getting Dave's mom to her appointments, making endless lists of things to do, getting through Christmas (OK, that took some doing!) and watching every episode of 'What not to Wear' ever made... as well as reruns. See, I'm moaning again but the sun's shining, I'm ready to tackle all the condo tax receipts and hopefully I'll decide today whether to bite the bullet and book our tickets to Pawleys before my next surgery Jan 29th. What the hell, it's only money (egads)! I think I'll even try to book some lunch dates with my buddies next week! That always cheers me up, so look out.
The Start of Phase II - or is it Phase III???
Anyway, today was my first Herceptin/non chemo treatment. Except for the fact that I need to keep remembering that "I" am in mostly in charge of keeping my treatment schedule on track, it went fine. Except for the fact that I waited for bloodwork (which I didn't have to have) and then waited for the Dr. to sign off on the Taxotere (that I've finished), all went smoothly. Next time, I'll make sure I remember to let the desk know exactly what I'm supposed to be getting as soon as I get there - rather than waiting 1/2 an hour only to say "but I'm not suppossed to have that this week", they look it up and say "oh, right". But all I have is time on my hands right now so I can't complain much. When I get back to work it will be more of an issue to try and get the schedule a little less drawn out. Also found out that I really am tired since my blood counts are actually a bit lower than 3 weeks ago - not unusual due to the accumulating effect of the chemo but should start to rebound and move higher over the next 8 weeks, therefore, more energy! I also have low/normal blood pressure (which I've always known) so that doesn't help.
Anyway, enough medical stuff. I met up with Sara and Emily this afternoon and we did a bit more Christmas shopping. Poor M's suffering from the remains of a cold and cough and was fine for the first 1/2 hour but then showed her true 'terrible 2' colours and wasn't having much fun for the rest of the expedition - sitting in the shopping cart is equivalent to torture it seems - she wants to 'me walk' but it's like walking with a darting gekko! Sara had that typical 'frazzled Mom' look on her face, especially after Emily was playing "on the chair/off the chair" in McDonald's (she wanted lunch and then ate nothing!) and ended up on her head upside down between the chair and the wall. No blood or major catastrophe but that signalled the end of our shopping day. At least until the alarm went off when we were leaving and the ancient "Santa-greeter" decided all our stuff needed to be inspected and he disappeared with only 1 of 5 bags for what seemed like forever. Only to say it was OK and when the alarm went off again and not to pay any attention and just keep going.... duh! Hopefully our predicted 'Snowmaggedon' won't be as bad as they say tomorrow and I can head to the mall to maybe even finish????? A story for another day!
Anyway, enough medical stuff. I met up with Sara and Emily this afternoon and we did a bit more Christmas shopping. Poor M's suffering from the remains of a cold and cough and was fine for the first 1/2 hour but then showed her true 'terrible 2' colours and wasn't having much fun for the rest of the expedition - sitting in the shopping cart is equivalent to torture it seems - she wants to 'me walk' but it's like walking with a darting gekko! Sara had that typical 'frazzled Mom' look on her face, especially after Emily was playing "on the chair/off the chair" in McDonald's (she wanted lunch and then ate nothing!) and ended up on her head upside down between the chair and the wall. No blood or major catastrophe but that signalled the end of our shopping day. At least until the alarm went off when we were leaving and the ancient "Santa-greeter" decided all our stuff needed to be inspected and he disappeared with only 1 of 5 bags for what seemed like forever. Only to say it was OK and when the alarm went off again and not to pay any attention and just keep going.... duh! Hopefully our predicted 'Snowmaggedon' won't be as bad as they say tomorrow and I can head to the mall to maybe even finish????? A story for another day!
So, like, I'm WAITING already?........
Waiting, to feel like myself, whatever that is. I know, I'm dreadfully impatient. I can handle the prickly head, the no eyebrows or eyelashes, the runny nose and eyes. But if anyone knows where my real tastebuds are, can you please return them?
Dave and I spent 4 days in the Land of Mouse (Orlando), just returning in the wee hours today. We had a fabulous trip across Florida just to have dinner at one of our favourite places, Frenchie's Rockaway Grill on the beach in Clearwater. Nothing like watching the sunset and having dinner right on the beach with the warm breeze reminding you that only yesterday you were freezing your butt off! I figure my 'taste-o-meter' is at about 80% but still not enough to risk wasting a good glass of wine or beer just in case. However, the Cajun scallops Dave ordered were pretty good and my beloved grouper sandwich and clam chowder were good enough that I ate most of it. Other things though, still can't cut it and it's sure disappointing when you're all ready for something mouth watering that doesn't taste just quite right. Oh well, I blew all sensibility out of the water and did some major shopping for the babies for Christmas - I love being able to buy spring clothes in December! Orlando's pretty high on the 'tacky' side with everything bowing to the Lord of Disney but you can actually buy stuff without Mickey on it if you look hard enough. We had some fun times with the racing group from Ontario that were at the show and I finally decided that I NEVER want to live in Florida... South Carolina for me all the way. After landing last night after midnight and walking what seemed like from Windsor through the terminal, we finally got home about 2:15am and crashed, but good! I was sorry I didn't have the energy for the drive to Cayuga for the kids Christmas party but we did manage to get to the local market and get a Christmas tree to put up tonight after Dave gets home from hockey - I'll do some pleading and get him to light a fire while we decorate it and then - maybe - I'll start to feel Christmas-y. This week will be my week to get into the spirit, wrap some
presents, write Christmas cards and finish my shopping, I hope! My next Herceptin treatment is Thurs but they tell me there are no side efffects with this stuff on it's own - I'm counting on that! Well, better bring some boxes of decorations upstairs and get ready for the big transformation!!!!
Dave and I spent 4 days in the Land of Mouse (Orlando), just returning in the wee hours today. We had a fabulous trip across Florida just to have dinner at one of our favourite places, Frenchie's Rockaway Grill on the beach in Clearwater. Nothing like watching the sunset and having dinner right on the beach with the warm breeze reminding you that only yesterday you were freezing your butt off! I figure my 'taste-o-meter' is at about 80% but still not enough to risk wasting a good glass of wine or beer just in case. However, the Cajun scallops Dave ordered were pretty good and my beloved grouper sandwich and clam chowder were good enough that I ate most of it. Other things though, still can't cut it and it's sure disappointing when you're all ready for something mouth watering that doesn't taste just quite right. Oh well, I blew all sensibility out of the water and did some major shopping for the babies for Christmas - I love being able to buy spring clothes in December! Orlando's pretty high on the 'tacky' side with everything bowing to the Lord of Disney but you can actually buy stuff without Mickey on it if you look hard enough. We had some fun times with the racing group from Ontario that were at the show and I finally decided that I NEVER want to live in Florida... South Carolina for me all the way. After landing last night after midnight and walking what seemed like from Windsor through the terminal, we finally got home about 2:15am and crashed, but good! I was sorry I didn't have the energy for the drive to Cayuga for the kids Christmas party but we did manage to get to the local market and get a Christmas tree to put up tonight after Dave gets home from hockey - I'll do some pleading and get him to light a fire while we decorate it and then - maybe - I'll start to feel Christmas-y. This week will be my week to get into the spirit, wrap some
presents, write Christmas cards and finish my shopping, I hope! My next Herceptin treatment is Thurs but they tell me there are no side efffects with this stuff on it's own - I'm counting on that! Well, better bring some boxes of decorations upstairs and get ready for the big transformation!!!!
I'm Done!!!
Just a quick note to day that my final chemo treatment is OVER! Kathleen, Dan and Sara came with me today to celebrate this final step in this part of the journey. Oh, and my beautiful little Bear 'Hope' that Jaclyn, Rawyn and Rion gave me was there too to make the day complete. Time now to start the recovery process and get myself back to good health, good emotions and the ability to get back to my friends and family socially! Thanks for all your good wishes, they surely helped along the way!
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