PamM,
Humm that never occurred to me, I will keep that Ace in my back pocket for future use, if need be.
Thanks PamS
Posted 16 April 2012 - 07:46 PM
PamM,
Humm that never occurred to me, I will keep that Ace in my back pocket for future use, if need be.
Thanks PamS
PamSouth
Posted 16 April 2012 - 08:49 PM
Hey Tedsey,
Missed your reply, would like to blame it on the Sprycel but I have been skimming the Internet lately. Taking the young man and his friend to spring dances/track meets/band events, cleaning up a few years of branches under huge hemlock trees, and finding time to mow about 3 acres of yard (yeah I have a rider, but lots of trimming) has kept me busy. I am once again questioning why I agreed to move out of a development with a yard my son could push off in about 40 minutes to 19 acres of ground that is about 1.3 developed and from a one floor home to a monster of a house with two sets of stairs one in front and another in back. I would mention the three car garage filled with unpacked boxes, the chicken coop that needs revamped or torn down, the half finished barn, and a few other buildings but when I do it reminds me of how much work needs done this summer. hehe Crap, I did have to remind myself, didn't I?
The dogs are loving it, they go up one set and come down the other just to run the imaginary race again. Although it will be a late birthday present I am impatiently waiting for my son's present to arrive. He is getting a metal detector. I can't wait to discover the hidden treasures in the soil that has been lived on since the 1800's. Life is good for the moment, and I can't ask for more. Nice to hear from you, hope things are well in your world as well.
Pam
Posted 16 April 2012 - 08:51 PM
Susan,
May we all be boring and undetectable in the near future.
Posted 16 April 2012 - 09:48 PM
Hey Janne,
Missed your post also, won't go into why check out Tedsey's reply I wrote. Hope all is well with you and yours. Miss seeing ya,
Posted 16 April 2012 - 10:01 PM
Pam,
I didn't realize you had to go all that way for your bw. I can't believe there isn't a lab closer to you, what a bummer! And the hospital close to you can't do your bcr-abl test. I'll never be able to figure out all this stuff. I just learned today how to get addresses out of my address book, without having to go to the book before I send an e-mail. I have to get a video of the happy dance, so I can do it for you. I might need cpr afterwards but Annie knows how to do that.
Pammie, you are truly an inspiration to all of us, especially all our new members, It's only been six months for you and look how far you've come! Most of us at dx have uncomfortable side effects. That is to be expected.. Then some people have no side-effects. All tkis work but sometimes it takes our bodys a while to adjust to them, and you really got blasted, I must admit we were all worried about you when you grew horns.
And being bit by a deer tick didn't help. But you have guts,and you hung in there. I'm so proud of you! ( I can see you hanging your head and saying oh shucks it was nothing!) It was the biggest nothing I ever saw. Like I said it took me over 3 years to find this board and it was a freak accident at that. I think my fingers were guided here, to my new virtual family. When I was first dx if I started going through what you did, I would have just stopped my Gleevac, and let nature take it's course. It wasn't easy for me,but I hung in there and after 3 years of those gi issues(which I had some before cml) I was truly going to stop taking my G. But then I found this site,and my onc switched me to Sprycel, and I've been doing great since.
So for all of you newcomers, hang in there, and stay on your meds it does get a lot better.
Lot's of Love Billie
Posted 16 April 2012 - 10:42 PM
Awesome post Billie! You are right, even if the start is rough, I can say with a little bit of perserverence and tweaking of meds, it is possible to move forward with this damned disease. All rough starts do not always immediately end up in transplant world, everyone should know that.
I would hang my head and say 'shucks' but I think my head is already hanging, and I am pretty sure I have never said shucks, well at least not while sober. Just think one day you may read of me in the world record book, the first person to actually grow a horn, medically documented. Oh, and I swear I didn't mean to kill that deer tick, but he is the one who decided to bury his little head into my stomach, not the other way around. Not my fault he had such a grip he came off in pieces. I did give him, well his body parts, a proper burial, watched each piece swirl as they circled closer and closer to the final flush cycle.
You would not have given up, you would have pushed through just to show those meds you are the boss, kick their royal arse as you have. And I had to keep going, you have more stories to share and each one is better than the last. I am still wondering if your mailman is a happy individual. hehehe Funny, I found this site just like you did, purely by chance, and without it those months would have been horrible. lately I lurk about and see what is going on.
New people rolling in for the first time, ignore negative posts, look to those who have been here a while, and ask all your questions, there are people here who answer them with knowledge and personal experience, can't get that anywhere else, least that's my take on this site. It takes some sifting, although it may look like we are about oakley sunglasses, diets that work, morbid horror stories that could be in the tabloids, and shoes that are stylish and fit, we are really about honest to goodness real people who have real diseases, supporting each other on our journey through these horrid cancers.
I am thinking of a new route in the lets just talk section. I have been posting there lately about politics, thoughts, life in general, and I might start a thread containing photos of 'stuff'. Mine will be loaded with dogs, a fish, and perhaps if he isn't hiding a Russian Tortoise now and again. Oh, I did forget to mention the white and black rabbits who have taken up residence in our yard. I think they are the neighbors, but you know what they say........the grass is always greener. With all this serious stuff, we need to keep the fun stuff going also, sometimes when I was feeling my worst I would log in, one day I still remember, was a terrible day and what do I find?, your story about falling off your priest's boat and then wearing his sweatshirt home. Now tell me, where in the world would I have found that story, unless I am a member of this society. Leukemia sucks, but that doesn't mean I can't have fun, enjoy life, and laugh when I become boring to Mr. You need a transplant even though your sprycel is working doctor. hehe I might need transplanted, but that is just geography.
Story on Billie, can't wait for the next chapter. Oh, and get Annie refresher classes in CPR, just in case. I am coming to visit and Ron is going to want me to leave. hehe
Posted 16 April 2012 - 11:05 PM
Hi Tedsey,
This is the first time I found you since you're last post. How are you feeling? What did the doctor say, we need an update from you. When one member of out virtual family,gets sick we all worry! Are you preparing yourself for kindergarten? You have to start months ahead. My children were 18 months apart so I was quite busy. Warning! you will be a taxi driver until they graduate. And keep a ledger, we encouraged our children to get involved with school and sports activities and they did, and me and my big mouth I volunteered to be a room mother, and joined the pta etc.! And if that wasn't bad enough I got conned into being a girl scout & cub scout mother. ( For future reference, the girl scouts don't deliver the cookies the mothers do.) You remind me of me when I was younger.worry,worry,worry, about our children, or bad dreams. Somehow we get through it. Then worry,worry, about how we will pay for college,so we get part time jobs while their still in school, And we're still running to all their events My husband worked for the railroad and he traveled all the time, I never knew when he was going to leave or when he was going to be home. So this was all on me. Warning! At 8:30 when you put your little angels to bed, I guarantee one of them will tell you they have to take a cake to school in the morning for a cake walk! All I could do was say what the h---, heck is a cake walk? I never baked, I made christmas cookies once a year. And I went to my Aunts house so she could show me how!
I hope your ALL better now Love Billie
Posted 16 April 2012 - 11:42 PM
Pam,
Ron is the most easy going person you'll ever meet. He'll probably go to bed at 7:00 pm. His entire family goes to bed really early,but they all get up at 4or5 am. That's just how they were raised, he had a rough childhood, and him and his brother and 2 sisters had to work on their uncles farm before they went to school. And his mom was a cook at the rectory at their church. His uncle paid them with food. So sad. But none of them complain about it to this day.
But be wary,we might wake up to a breakfast of raw eggs,raw liver, and oatmeal with octupus eyes. He has this sardonic sense of humor, which nobody knew he had until he we started dating in 1997. He was so very quiet and shy when I met him. I had to drag everything out of him,because I knew nothing about him. After a couple years of being with me his mom used to say what did you do to my son? His brother and sisters say the same thing. He had so much personality and humor locked up inside of him, he had to let it out just to shut me up. I got all the papers put away, so you're welcome anytime. Lots o Luv Billie
But I still have to dust! I did warn him you were coming!
Posted 16 April 2012 - 11:53 PM
Pammie,
I got my oncs attention when I asked him how he liked being a bartender! hee hee that reply is on another post
Luv Billie
Posted 17 April 2012 - 08:24 AM
Raw eggs and liver, oatmeal with octopus eye, geez Billie, I will think I am at the Ritz!
Posted 17 April 2012 - 08:27 AM
Billie, I read that story, I am sure he enjoyed serving beverages, and almost positive he had a healthy glass poured for himself under the bar. One thing I learned before I was 21, you were permitted in the bar and no one could ever tell the difference between vodka or water sitting in a glass and coffee with Baily's Irish Cream always looked so innocent.
Posted 18 April 2012 - 06:34 PM
Pam, I'm very annoyed at your doctor for thinking that is an ok way to treat you but also simultaneously glad that you're great results were "boring" enough for him to think that lunch was more important!
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Posted 18 April 2012 - 06:56 PM
Hi Pin,
I have been bothering them, looking for FISH test, it was back on the 17th last time. I hope every one of us becomes boring to our doctors. I know I should be annoyed, but for the first time I didn't have to hear about the possibility of loosing response and heading toward finding a donor is a definite possibility. Transplant doctors are just that, and this option is where they head even if someone is responding. First appointment since last October I walked out of the hospital and office with more optimism than when I walked in. Hope all is well with you!
Pam
Posted 18 April 2012 - 07:10 PM
Hey Pam, you keep on bugging them until they give you the results! I'm sure it will be negative this time! And so glad you didn't have to listen to the transplant doctor spiel
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
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