16 replies to this topic

[0vercast]

I'm newly diagnosed as of this month, and I'm still in the feeling out process.  I'm gradually getting my head around this, but I have more questions than I have answers.  I just got off the Hydrea a few days ago, and I'm glad because it didn't really agree with me.  Now I'm just taking the 400mg of Gleevec daily and things are going really well.  I don't think I have any real significant side effects from the chemo at the moment, other than minor edema around the eyes in the morning, some annoying short and long-term memory loss, and difficulty staying focused at times.  I had some dizziness, trouble sleeping, ear popping, nose bleeds, minor rashes, lost my sense of taste, and had my hair and nails stop growing during initial treatment, but those things have returned or are returning to normal, except for the sleep issues.  I think it was the stress combined with heavy doses (4000mg) of Hydrea that did that, because I feel a lot better the last few days since my WBC fell to normal levels and they took me off the Hydrea.

• I would like to know what time of day people are taking their TKI pills to reduce the side effects they may be feeling?  Any observations that may be helpful to the newly diagnosed would be appreciated.

BTW, I'm 29 and in good health otherwise.

Thx, Joe

[HeatherZ]

Hi Joe,

Sorry you had to join our club but there are a great group of people here for support and answers.  I have been on Gleevec for 2 years now.  I take mine after I eat supper.  I have found that having a good size meal reduces the stomache upset.  When I first started Gleevec, I didn't have any side effects for the first month or so.  Once my blood counts normalized, I started in with leg cramps and bone pain.  Oh and the fatigue - how can I for get that.  After a few months, the side effects did ease.  Now I find they come in cycles.  Right now I am in the middle of a bone pain, foot cramp cycle and I wiss it would end because I am really uncomfortable all the time.  The edema seems to be ever present and I am more often fatigued than not.  Just for the record - after reading posts about side effects I started out taking my G at supper because I felt that best fit into my lifestyle.  The only time I really get a little bit of stomach upset is if I don't take it with a full stomach.  Good luck on this journey - we are all here for you.

Heather

dx 3/2010 G400 since

[CallMeLucky]

Hi Joe - Sounds like you have a really good grasp on things so far.  I got about 10 years on you (I'm 39), was diagnosed when I was 37.  You will find people take their pill at different times.  For me I settled on taking it right before I go to bed.  I feel it lets me sleep through some of the initial side effects that I get when I take the pill (some mild nausea or cramps).  I also find that it allows me to keep a consistent schedule where I take my pill everyday pretty much around the same time.  I am less likely to forget this way, it just becomes routine and my wife will usually ask when I get in bed, "did you remember to take your pill?".  I usually take it with a glass of water and a plain cookie or cracker to pad my stomach.  This seems to work pretty well.

Sorry you had to join us hear, but I think you will find an incredible amount of support and information here.  Post any other questions you have and best of luck with your treatment.

[mscl]

Joe,

I'm 47 and was diagnosed about six weeks ago. I was on those heavy doses of Hydrea for about a week then started on Sprycel 100 mg.  I feel very fortunate I have not had many side effects so far.  I take mine in the morning as a part of my morning routine. I had a little fatigue the first couple weeks and now just dealing with a little joint pain, but do better when I stay a little active.  As of last Thursday, my Onc said I'm already hematologic remission with normal blood counts.  Not sure if that is normal this early, but sure sounded good to hear that.  This group is great and I learned early on, there is a ton of information on the Internet about CML, and I also learned to ignore the older dated stuff.

Marilyn

[Trey]

For Gleevec, many of us split the dosage and take half in the morning and half in the evening.  Tasigna dosage instructions are for twice per day, roughly 12 hour intervals.  Sprycel is once per day whenever you choose.  Splitting Gleevec dosage can help reduce side effects for some people.

[Susan61]

Hi Joe:  Welcome to our group.  It sounds like you have everything going pretty well.  I have been on Gleevec for over 11 years  now.  Still on the 400mg dose a day.  As to when to take it, it depends on your lifestyle and schedule.

I take mine in the morning with a full breakfast to avoid the nausea.  I still get foot cramps, edema around my eyes, fatigue.  I have developed that memory  loss also, but some of that I think comes with age for some of us.  Your only 29.

Some of those side effects improve with time.Whenever you do not understand something or just want to talk to someone, then just join in with us. There is always some kind of topic that most of us can relate to and share.

Susan

[0vercast]

Thanks for the replies.

I asked my HemOnc about splitting the pills into two daily doses, and he fairly strongly advised against doing so.  He said the proper practice with a TKI is to take it all at once.  He didn't elaborate any further.  Has anybody else asked their docs about this?

[Marnie]

Hey, Joe. . .welcome to the club that nobody wants to join!  Sorry you had to become a member.

I currently take my meds (Sprycel 100mg) at 7:00 p.m.  However, after I retire (4 years) I will probably start taking it in the morning instead.  When I was on Gleevec, I took it at night. . .would not have worked in the morning, as I'm a teacher, and the GI issues just wouldn't work with my job. 

What part of MN are you from?  I'm originally from Mankato, but now live in the Denver area.

Marnie

[0vercast]

St. Cloud

[Trey]

Splitting dosage is almost always done for full dosage Tasigna, and commonly done for Gleevec.  Not usually done for Sprycel.

[kellbell]

Hi, I'm new to this to. I am 36 yrs old and I take sprycel at 8:30 pm . At first I took it at 4:00 to see how it made me feel and deided to take it later because I felt real sluggish and couldn't think or anything. I feel heavy and tired right after I take it so it helps me sleep.  I have two daughters and am a single mom so I can't be feeling like that with to many things to do.

                                                                                                      Kelly

[CallMeLucky]

I have spoken with two CML specialists about splitting Gleevec dosage and they both had the same response.  "it hasn't been tested in a trial, the results of the trials that were done show that 400mg in one dose is the recommended dosage.  It would not be advised to dose differently then what has been tested in a clinical trial setting".

I know a number of people on this forum who split there dose and seem to do fine, I also know some doctors don't seem to think it is a big deal.

[Trey]

Oncs don't care much about patient side effects, which is why they don't care about splitting dosage.  My Onc agreed to split dosage way back in 2006 and my response has been excellent.  Many Oncs have not caught up to patient needs regarding side effects reduction, and splitting dosage helps some people.  And split dosage works well for Gleevec and Tasigna since they remain in the bloodstream for a long time (approx 18 hour half-life).

[Melanie]

I'm on Tasigna and since there's a 3 hour fast required (No food 2 hours after or 1 hour before taking your dose), I take my 1st dose around 5-6 am, when I wake up to use the rest room. I keep it on my bedside table. The 2nd dose I take around 4-5 in afternoon, depending on what time we're having dinner.  I don't know how to cook without tasting the food as I'm cooking. It's as close as I can get to the 12 hour interval and seems to work okay.

Melanie

[0vercast]

Does anybody else experience an irritating, but short wave of fatigue about an hour after taking a 400mg dose of Gleevec?  I find that I do, so I've been taking my dose right before I go to sleep so that I'm already asleep when it occurs.