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3, 6, 9 & 12 month results on Gleevec - please help :(

Started by Pin , Sep 06 2011 10:07 PM

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#41 Guest_billronm_*

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Posted 27 June 2012 - 09:31 PM

Hi Pin,

I was on Gleevac 3 years, and I had so many gi issues, I begged my onc to put me on Sprycel which he did,and it was a world of difference, almost overnight my gi issues went away. I'm almost 5 years since my dx, I never wanted to see any results of my bw because I wouldn't understand anyway. But this January I got my results, and got my results in march, when I compared them I went into a massive panic, because my numbers went up. So I had to wait a month for my next bw, I was a wreck. But I asked my onc about reducing my Sprycel dosage in march and he said wait another month, so when I had my bw done in April he reduced my S to 50mg. I will never read my lab results again. I knew I was the type of person that would freak out at any change in my labs. I think that was my 5th obituary I've written for myself. Maybe you can switch to Sprycel if your side-effects don't settle down. I'm much happier on S. I just wanted to share that with you. Sincerely Billie

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#42 GerryL

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Posted 27 June 2012 - 11:06 PM

Hi Billie,

We would all hope that nothing bad happened to you as we would miss your adventures. I still smile when I recall your Florida stories.

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#43 Guest_billronm_*

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Posted 28 June 2012 - 12:04 AM

Hi GerryL

I just can't believe the things that happen to me, or the situations I get in. It has happened to me all my life.The craziest things. As I've told you I have lived along lake erie all my life, and as a teenager a whole group of my schoolmates went to the beach all the time, no matter how we figured out a way to get there. It was a lot safer then! At that time they came out with spray on haircoloring (it was just like hairspray). We have a peninsula with several beaches no 1-11. We always went to beach 6, that was where all the cute lifeguards, and guys went. So we hung out there. At the beginning of the peninsula was the home drive in everybody went there. One time a bunch of us went to the beach for the day (remember we were 16 and had spent 2 hours fixing our hair and make-up so there was no way we were going to get wet) and my girlfriend Chris and I had sprayed our hair jet black, well our friends wanted to go to the drive in to eat but Chris and I wanted to stay at the beach. We told everybody we would walk up to the drive in later we wanted to get more sun,plus keep an eye on the cute new lifeguard. We thought with all the other girls gone we could get his attention. Now we were only 16 and the lifeguard was a college guy, so he could care less about a bunch of teenagers.

Anyway we never got the lifeguards attention and Chris and I had to walk to the drive in to meet our friends, and it started to rain, then it poured and we were walking to the drive in and all this black hair color we sprayed on just started running down our faces and all our clothes we were soaked and there wasn't a drop of haircolor on our heads it was streaked all over us ,they didn't have waterproof eye make-up then either

so everything just streaked together. Finally an elderly couple picked us up and gave us a ride to the drive in. When we walked in nobody knew who we were. So we cleaned ourselves up the best we could. The worst part was none of our friends wanted to give us a ride home because they were afraid we would stain their cars. We had to call our parents to come get us, I can't remember which parent came to get us because they all worked. Just another day in my life, even though I didn't know it then! lots o luv Billie

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#44 GerryL

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Posted 28 June 2012 - 12:20 AM

Hi Billie,

I think things happen to people all the time and it's just a special gift you have to see the funny side of it. If you and Ron ever decided to move to Australia you'd fit in quite well over here as we tend to have a black sense of humour. http://australia.gov...ry/austn-humour "Australians can have a very black sense of humour. While in many cultures it is considered poor taste to find humour in difficult circumstances, Australians tend to look for this lighter side. This is perhaps our strongest reference to our brutal past, where humour was a means of coping with a bad situation."

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#45 Pin

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Posted 28 June 2012 - 12:22 AM

Thanks Gerry

I see my specialist next Monday - I just spoke to her on the phone though and she said that I would already be considered "undetectable" and that my results can't get any lower than that. Huh? Why do they make it so confusing. I am fairly sure this is incorrect. But even so, I guess the take home message is to stop worrying about it anyway...

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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#46 Pin

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Posted 28 June 2012 - 12:27 AM

Hi Billie - Yes, I imagine some time in the future I will be moving to a different TKI like you - I just think even whilst these side effects are currently somewhat manageble that they are going to take their toll on me eventually, I won't be able to sustain it forever - That's for sure. I also love your stories!

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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#47 GerryL

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Posted 28 June 2012 - 12:58 AM

I can't work out why we get different reports, it's confusing. My PCR test goes through Adelaide as well. It would just be nice if yours read "undetectable" as well - would make life so much simpler.

So would you like me to start doing the "happy dance" now or do I wait until you see her on the Monday and find out what she thinks about you lowering your dosage - could be an extra long "happy dance" if she is agreeable.

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#48 Pin

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Posted 28 June 2012 - 01:04 AM

I'm almost sure it's incorrect - I live in a small place (only about 5 new cases per year), and they said they've never seen anyone's results go below 0.001 (my argument is that, just because you haven't seen it doesn't mean it isn't possible!). So my feeling is, they just haven't seen it before...This isn't the first (or last, I imagine) time I've had to challenge their knowledge on CML or its management - if my results ever go in the wrong direction, I will definitely be getting another opinion. No happy dance just yet - I think I need to endure a couple more years of this first to make sure it stays down there before I reduce the dose. I am going to ask about her general stance on this subject though...

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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#49 GerryL

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Posted 28 June 2012 - 01:36 AM

It is about 249 cases of CML diagnosed per year in Australia, so getting 5 of them isn't too low. http://www.leukaemia...kaemias_cml.php

Mention to her that you talk to someone else in another state, who's results actually state negative on the PCR report. I should ask my doctor next time I see him, how many he has. He is loving Tasigna nowadays and switching everyone over, so the number should be increasing. LOL

Let me know what the outcome of your appointment is.