6 replies to this topic

[grannyd]

Hi, this starts my 8th week taking tasigna, so far so good, i think. i was just wondering about the hour of day most people take tasigna? i was taking it at 9am & 9pm. but the eating early now that spring is here, {yeah right, calling for another snow thurdsday, yuck!] i started taking it at 4am & 4pm. that way i can eat later and feel more satisfied in the evening. also, my onc has my blood work done every 2 weeks instead of every week. i know i should be happy but i still worry about the results!!!! how long does the anxiety last worrying about the results of blood work????? sometimes i think i am just plain crazy!!!! i went to va. for a week to visit my son, his wife, and the two most precious grandkids, seems like all i could think about was CML!!! any advise for me?? thanks for listening, feel free to knock me in the head with any info to relax & know all will work out!! prayers to all, grannyd

[CallMeLucky]

8 weeks is still pretty early in and everything you are feeling seems normal to me.  It's what I went through and I have heard others describe.  I'm sorry I can't give you an exact moment that it will let up because it doesn't seem to happen overnight.  If you respond well, and most people do, you will find that as time rolls on it will be less the primary focus of your life.  Tests will likely not show any big surprises and there will be a comfort when results start to look as expected.  Your body will get more used to taking the meds and hopefully side effects will lessen.  Something will come up in life (like it always does) that will distract you and you will find more and more that periods of time will pass where CML is not the first thing on your mind.  As the length between Dr visits starts to widen you will likely start to find yourself feeling good afer a visit and not worrying so much about test results until a few days or week before next test.  The mind has a coping mechanism, you can only stay in a heightened state of anxiety for so long, evenutally the mind will get used to this and things will start to get better.  There will likely be ups and downs, some days that blow by without much thought and other days where it weighs on you more.  Everyone here understands how you feel, so please continue to check in with us.

I also wouldn't worry about 1 week vs 2 week visits.  It is important to keep reminding yourself that CML is a chronic condition, it doesn't do anything fast in the chronic stage.  There aren't going to be any big surprises that occur from week to week.  Enjoy the fact you are not be stuck with a needle as often

[janner25]

Hi - I'm going on month 5 since dx and started on tasigna as well.  I know exactly where you are...it does get better (at least it has for me).  And I can tell you that my venting on this board helped me tremendously.  As for the timing...I will admit that my 12 hours isn't as strict.  I normally take at 6:30 a.m. (or as soon as I get up) and then around 8:00 because of when we eat dinner...my doctor said as long as I'm just not taking it with the food and allowing the time recommended for food, that's OK.

I know I had a REALLY bad time of it for a while emotionally...just overwhelmed with everything.  I'll be 37 in May and just the thought of taking those 4 pill everyday - to keep me alive - seemed like a daunting task!  Not that I won't do it..but just the fact that I'll NEED to take them for the rest of my life was a big reality check.  Then I looked at my boys, 8 and almost 5...and my heart broke.  It's easy to get to the pessimistic side of things when you get blind sided with this diagnosis.  I'm a normally very optimistic person...so for me...this diagnosis put me in an odd place emotionally.  I could see all the bright sides...CML - chronic stage...pill to help for long life...but all I could focus on was LEUKEMIA!!!!

I can say that I'm in a better place than I was even a month ago.  This is not my main focus of life anymore - life is!  My stamina has changed a little bit - and I hope I will get it back (for example, actually going INTO work v. working from home I'm exhausted, or going to a baby shower I come home completely spent!  anytime I actually need to socialize in person versus on the phone takes a toll on me...and I'm a bit of a social bug so has taken some adjusting)....but those days don't happen all the time.  As long as I chill at home - with my family - I'm normally pretty good!  My stamina is coming back as far as house stuff too...and instead of being exhausted at 4 it's more like 7...and I think that could just be LIFE, not necessarily CML and all its excitement.  It still is a day to day thing emotionally - some days are better than others...but the bad days are becoming less often.

It will take time to adjust - and thankfully - we have the time .

Keep your head up!  Prayers for you!

[grannyd]

Thank you Janner & Lucky!!! Sure helps to hear from people going thru the same situations, I know I could have it much worse and am thankful that I don't. I just seem to have this THING first and foremost on my mind. Glad to hear with time it will change, although everyone is different, I hope I start having better days soon. I know having this board has helped so much, all the people with their kind words are so encouraging!!!!  I have seen on here about being in the sun not a good idea?? I am usually an outdoor person from Spring thru fall. Never have used sunscreen in my life, was always very dark olive skin and got very dark tan. Does taking tasigna mean no outdoors without sunscreen?? I never thought asking my onc about it. I go to Cleveland Clinic again in April to see Dr. Advanti but will ask my regular onc before I see her!! Thanks again  for the encouragement, it helps to discuss things with others that are going thru this!! I love this board!!!! prayers to all, grannyd

[cometbro]

Regarding the time interval for taking Tasigna, don't even worry about that, as long as you don't take it with food.  I pretty much take it on random intervals, usually just no closer than 8 hours apart.

Usually, weekedays I take at like 7 a.m. and then probably at  11 p.m...then back the next morning at 7 a.m.  Rarely do I take it exactly 12 hours apart.

I was concerned about the timing of Tasigna and was really worried about taking it on a strict schedule because that can definitely affect lifestyle.  I decided to email Dr. Druker regarding my Tasigna schedule and regarding drinking alcohol.  This was his response:

"The half-life of Tasigna is long enough that 16/8 hour interval should be fine.

An occasional drink is fine as long as your liver enzymes are normal.

Sincerely,

Brian Druker, MD"

.

16/8 .....or 8/16  meaning like taking it at 7a.m. and then at 11 p.m. (16 hours later)...then again 8 hours later. I've been taking it for about 5 months now and so far my blood work has been coming back fine.  What I just keep in mind for myself is to take it "some time" in the day, and "some time" in the night and i'm usually worry free regarding the scheduling (except for the damn waiting to eat or waiting after I eat, but at least doesn't come with a strict 12 hour interval).

[donkatking]

I was taking tasigna at 5.30 am and again at 5.30 pm so at least i could have a decent dinner hour.  Well have had some GI problems and has an upper GI today.  They found no problems but found some inflammation.  I'm not sure why!  But I have been taking prilosec and using maalox as it can be uncomfortable.  The Onocologist said no problem using it.  I had hurt so bad a week ago I ended up back at the ER and they though it was a heart problem.  Oh, thay ran all kinds of tests and found my heart was OK but didn't do much of anything for the pain I was having.  They ended up keeping me in the the hospital as an out patient for two days.  (ER's definitely don't know anything about CML and even less about Tasigna)  Well I went to my onocologist after calling his office about the pain I was still having.  He took me off all meds for one day and I went in to see him. Blood work looked good.  He made a few calls to get me set up for the Upper GI.  Oh well, guess this this discomfort too shall pass.  I have had so many tests done--most of any in my entire life,  the past two months.  I still believe the problem started with some cylindamyerson (mispelled) they gave me when i was first time in the hospital.  At the time I was taking Glee vec, awaiting my Tasigna and I feel that damned antobiotic caused the problems I have.  I know I was suppost to be released from the hospital thay day and was in so much discomfort and paid they kept me an extra day.  Well anyway I have some discomfort but will get through it.  Last few days weren't too bad and I hope it will all, clear up.   I am now taking tasigna at 9.30 am and 9.30 pm.  That means if i'm at work can't forget to take it!  My wife calls me as I can easily become distracted.   I just want all the damned discomforts to go away and get on with this med.  I will not go back to the ER unless my life depends on it for sure.  The Onocologist gave me his pager number and I won't use it unless I feel really bad discomfort.  So far I think I'll beat the few set backs I have had and I know as a newbee I have a long way to go.  The Tasigna has definitely dropped my WBC back to normal and since the last Onocologist's visit I am now taking the 150mg dose twice a day and hopefully that will help.  I'll keep experimenting with time and hopefully I'll find the perfect time to take Tasigna and be happy!!     

[markmendonca]

did u loss  hair and are u getting it back at all . i have a hard time can't spell well with out some help.. thank you