The Leukemia & Lymphoma Society Community: Message List

Re: So frustrated - #$^@&'ing PCR tests

communityreply@lls.org — Mon, 20 May 2013 21:23:18 GMT

Sorry to hear about this CallMeLucky.

Since they switch labs, its way to early to freak out, i know its not easy, heck mine went up a bit as well last time and those were from the same lab, but lets try to enjoy life and not let a stupid number ruin our day/week, as we know the CML will probably not kill us anyway. (Knock hard on wood). Dont let a small number ruin the big picture as i try to tell myself when my numbers went up.

I will be crossing my fingers and toes for both your PCR and PSA test results to be good, and i will of course toast to your good health with my glass of red wine today.

Please keep us updated.

PS: Why the f%&k did they switch labs all of a sudden? Isnt going from IS to non IS a step back?

Re: How many of us smoked cigarettes?

communityreply@lls.org — Sun, 19 May 2013 21:37:38 GMT

I was a "Party smoker", only smoked when drinking alcohol in social settings, maybe an average of 10 cigarettes pr month.

Stopped after i got CML.

Re: Tinnitus and feeling dizzy

communityreply@lls.org — Tue, 14 May 2013 09:02:21 GMT

Dan, and Billie, now i feel bad for making your ears ring, hope it subsides soon. Lets try not to think about it anymore shall we Hopefully it will go away.

Glad to hear its not affecting your daily life Dan, its not affecting mine a lot either, but it is annoying, especially when going to sleep some nights.

Pin: Yeah, mine is also just in the one ear, i had it pretty bad yesterday after an eventfull day at work.

Billie: If your ever in Norway for some reason, i will invite you to a party

Teddy

Re: Tinnitus and feeling dizzy

communityreply@lls.org — Mon, 13 May 2013 18:00:26 GMT

Hey Dan, is your tinnitus any better after the methyprednisolone?

Mine still comes and goes, but it actually gets worse on the days i have a lot of stress.

Its generally better now than it was a few months ago though, so things are looking up

Hope yours is better.

Teddy

Re: Exercise and TKI timing.

communityreply@lls.org — Mon, 13 May 2013 17:43:29 GMT

Thank you for all your replies!!

jjg: Thank you for all your insight, ive been thinking of exercising pre-tki, but as you say, it requiers some self disiplin and motivation. Maybe i could as you say eat a small "snack" before training at around 9:00, then exercise and maybe eat my breakfast at around 11:00. I will think about it

cleocans: I went to the gym yesterday, so lets hope my muscles have adjusted a bit more now than last time!

mdszj: Let us know how it goes with your new schedule

Trey: Thanks for the info, will adjust workout schedule so that i either work out before the G, or at least 3-4 hours after. Yesterday i worked out around 4.5 hours after taking my meds, and i didnt feel so dizzy.

Dan: Seems you can work out any time no matter when you take your drugs, you are probably a lot fitter than me, maybe i will be able to work out when ever i want regardless of when i take my Gleevec, some time in the future

Yeah, sore muscles are always an issue when i start exercising, im sure it will get better.

I might try to get a workout before the tki on the days that i have off, and see how it goes. I dont think i can squeeze in a workout before delivering the kids to kindergarten the days i go to work, at least not yet on account of my energy levels. After 4-5 hours of work im usually totally beat, and need to have a small rest before picking up the kids again.

I really hope the fatigue gets better over time, but its been over a year now, and it doesnt seem to be getting any better, so im hoping the new work out regime will help with that. At least the fatigue is not getting any worse. (Knock on wood)

Teddy

Exercise and TKI timing.

communityreply@lls.org — Sun, 12 May 2013 09:04:27 GMT

Hello everyone.

I was wondering if anyone could share your experiences with excersising and the time of day you take your tki?

I just started working out at a gym 2 days a week (on my 2 days off work), and i usually take my Gleevec at around 09:30 after breakfast, then a light lunch at around 12:00, and then go to the gym around 13:00. When i started cycling, i felt dizzy and had to really focus to stay on the exercise bicycle, afterwards i felt like i was about to hit the floor on a few occasions when lifting wheights. I did not exercise hard at all.

Im thinking i maybe should wait until the evening to exercise, but im not sure, thats why i would like to hear your experiences in regards to this.

The best time is probably training before taking the tki, but that is not an option for me at this point, as i like to take my tki with breakfast, at least for now.

PS: The day after my first exercise, i felt better than i had in months, and i had more energy, so this is definately something i will continue doing. The second and third day after, my muscles felt like they had been through hell, but im pretty sure that will get better over time

Teddy.

Re: I feel like I'm always being picked on

communityreply@lls.org — Tue, 07 May 2013 18:02:30 GMT

Hey Billie. Sorry you are having a rough time, i wish you all the best in this difficult time.

You have always given me comfort on this board, and i hope you feel better soon.

I will have a glass of wine tonight and raise a toast in your honour and to your good health!

Teddy.

Wow, what a fighter.

communityreply@lls.org — Sun, 05 May 2013 21:28:23 GMT

http://thestar.com.my/health/story.asp?file=/2013/5/5/health/12990835&sec=health

Re: One year PCR results are in.

communityreply@lls.org — Sat, 27 Apr 2013 18:16:38 GMT

Thank you for sharing your experiences dianysa.

It seems most of us will bounce around a bit when it comes to the pcr testing. I will try not to pay too much attention to the numbers next time, as long as i dont see a major increase

Teddy

Re: One year PCR results are in.

communityreply@lls.org — Sat, 27 Apr 2013 18:14:21 GMT

Thank you Dan, yeah i think im in a good place treatmentwise right now, and i knew that a small increase might occur, it just shook me up a bit when it did, even though i should know better

Glad to hear you are in good shape! I havent been having my walks lately cause my gf has been in Spain for a week, so ive been taking care of my 2 and 4 year old boys, and i just started a new job + BMB and PCR tests, so the last few weeks have been a bit rough to say the least. Hoping for everything to settle down now the next week, so i can start working out with that gym membership i got a few months ago

Teddy