13 replies to this topic

[donkatking]

Well i am so very glad that my WBC was back to withing normal range after 2 weeks of taking Tasigna.  I could jump for joy!  The side effects are another story.  I have read where people have itching and I too have some of this, The night sweats aren't as bad as they one was but still I wake up cold as my shirt always seems damp and that makes me cold and i wake up  I have been having some back pain and the doctor's office had already given me a prescription for Oxycodone 10-325 and Oxycodone 5-325 for the kidney stone I had.   I don't take the 10-325 as it really messes me up and I find I cannot concentrate.  I have used to 5-325 and it seems to help but i don't want to use this daily as one can be addicted to it.  Will see my Primary care Physician tomorrow and see if there is something else that will work.  My sleep is in the gutter.  I seem to wake up evey two or so hours and am just exhausted before the day begins.  I took the last two days off from work to see if I can somehow get this under control.  Again i will ask my PCP for a sleeping aid as I need to be able to contentrate with the type of work that I do.   The Onc has reduced my tasigna from 200mg to 150mg and this begins after I completely firish the 200mg that I have.  That's two more weeks.  I guess that is improvement.  The only thing that concerns me on the last blood test was the high Glucose level of 189 (normal 65-99) and the Onc believes this is also due to the Tasigna.  I will also discuss this with my PCP tomorrow when i see him.  I know to me 189 seems high but i do believe people who are diabetic have even higher counts.  It's just a concern.  Other than these few issues I am doing well and i figure the longer I am on tasigna my body will adjust.  At least that's what I hope.   I am not going to go out and buy anything over the counter unless it is approved by the doctor.  As i have told my friends I will not let this condition destroy my life.  I know I'll have to make adjustments to certain things.  My next appt with the ONC is on the 21st and I'll discuss all issues with him, especially anything new.  Haven't made up my mind if i felt  better before Tasigna or after as i had felt bad for many months.  Gotta give it time I guess. Maybe the smaller dose of tasigna will help also when i begin taking it.  I want to feel better and have a handle on all this before camping season begins next month.  My wife (Katherine) has been a true trooper through all I have gone through lately.  I know she has had some bad nights sleep as I seem to get up alot.  I am truely blessed she has thoght of knocking me out so she can sleep better.  Bless her heart.   

[janner25]

Hi- I agree that they suck.  But for me they are starting to get a little manageable.  And some days - dare I say - I feel almost 'normal'!  I started tasigna at the end of October 2010 when first diagnosed.  Each month that goes by, I start feeling a little more normal.  But I can tell you the first 3 months - UGH!  Felt like I was run over by a bus.  I had headache, exhaustion (which I don't think is the right word for how I actually felt), a few rashes, heart palpitations, shortness of breath.  I was a MESS!  But it's getting better!  I still have trouble with the sleeping...but hoping that will go away.  It also doesn't help that my husband works 2nd shift and as quietly as he comes in, I still normally hear him.  I also don't sleep soundly until he's home.  I can't win!

Good luck to you and I hope that you start seeing a decrease.  If not - maybe switch med?

[jrsboo]

Hi there Don,

Yes, they suck big time.  I have found the best person to deal with all the side effects is the Oncologist and the Cancer center.  No one else is all that familiar with the drugs we are on.  And even then, sometimes my darling onc tells me that "that" side effect is not one of the known side effects of the drug.  But from coming here, I can tell that others are experiencing the same crap, so .................. logically, it IS a side effect.

Concentrate on seeing the positive, see what you CAN do as opposed to what you can't.  You are very very new to the drugs, and you will have an adjustment period of about 6 months.  The hardest was the first two months, and then things got better.  But I am no where near where I used to be. 

At the cancer center I have seen a specialist dentist (for the tongue lesions), a specialist psychiatrist, a specialist therapist (there's nothing wrong apparently, it is very normal to be upset at having this diagnosis and learning to live with it), but it feels so much better to talk to a specialist who knows EXACTLY what you are going through.  I went back to my Primary Care Physician for a follow up (he wanted to be sure I was taking the leukemia seriously!), and he was pretty clueless about the side effects and very dismissive of them.  Oh well. 

Sending you best wishes for a quick adjustment.

Caroline

[Susan61]

Hi:  I just read your whole post regarding all you have been going through with the side effects, but what really hit home for me was your statement about Kathryn and what she puts up with.  I do not think enough credit goes to everyone's spouse, caregiver, better half etc.  Its so hard on them to see what we are going through, and all the help as well as frustration that they experience.

     Its been hard on my husband with things I have gone through with side effects or just not feeling good.  When I was first diagnosed, and nothing was working for me.  He kept taking off from work to take me all over the place for 2nd opinions, different testing, etc. etc.  Not to mention the loss of money in the paycheck every week.  Then he took me into New York every 4 weeks for my clinical trial appointments.  We did it in one of the coldest winters with lots of snow.  We used to go into New York by train.  It was easier than trying to drive into the city.  I cannot tell you how often I think about all he has done for me, and what he still does to make life easier for me.

    God Bless all our supporters that help us get through each day and every obstacle that we encounter.

    Just wanted to share that little bit of Food For Thought!!

Susan

[CallMeLucky]

With regard to the high glucose reading on your blood test, did you eat before the blood test?  Blood sugar is usually measured after you have been fasting for 10-12 hours.  I found that when I would go to my appointment, there was a bagel shop across the street, I would run in on the way to my appointment and eat while I was in the waiting room.  My blood sugar was coming back very high.  My onc wasn't concerned but I was wondering what was going on, so the next appointment, I waited until they drew my blood before I ate and my blood sugar was perfectly normal.  So just keep in mind, for an accurate blood sugar test, you need to fast before they draw blood.

And yes, side effects suck....

[donkatking]

Well just spent two days back in the hospital.  Was very hard to describe as it felt like an heart attack/very bad indegestion.  They ran a series of tests to include EKG's. stress test, and heart ultra-sound.  Really good heart doctor.  Well the heart I can say 100% is OK.  They gave me some probotics thru the IV and almost immediately the problem died down, however they held me over for observation as in the past I had had a pulmonary embolism and had perconditis.  I just felt really bad on Saturday and when my toungue started feeling weird I told my wife to take me to the.ER.  They couldn't get anyone from the cancer center but she did show up this morning just before they did the final test on me.  When you eall them you are on Tasigna they just don't know much.  I had my lists of all meds taken over this past months with times taken..Looks like it may have been really bad indesgition.  Well gonna to take Tagamet OTC twice aday for the forseeable future.  Gotta get it cleared up.  I will see on ONC on Monday afternoon.I had felt really good on saturday Morning after a really good sleep--Thanks to Ambien.  I just started feeling really bad and it almost centered over my heart and I got very concerned.  Well I know i have a fully functing heart now and met a wonderful cardiologist (DR Lim).  Believe I can now beat this with priolsec twice a day for the forseeable future. Well I am waiting for all this weird stuff to settle down and make me sane again.  Thanks to Tasigna my wbc is now down to just over 8000, well in the normal limits.  I want no more trips to the er.  I am really realizing the weird things that you have to endure while on Tasigna.  I'll make it!

[GerryL]

Hi Don,

Did your specialist put you on the Prilosec?

One of the drug interaction sites http://www.drugs.com...-1750-1118.html comments -

GENERALLY AVOID: Chronic use of proton pump inhibitors or H2 antagonists may significantly decrease the oral bioavailability of nilotinib. The mechanism is decreased solubility of nilotinib due to increased gastric pH. Nilotinib's solubility is pH dependent and it is insoluble at a pH of 4.5 or higher.

MANAGEMENT: The concomitant use of proton pump inhibitors or H2 antagonists should generally be avoided during therapy with nilotinib.

[jrsboo]

Dear Don,

Sorry to hear that you were in the hospital.  I am so lucky to be near two cancer centers.  No one else knows about our drugs.  No one.  And yes, you should ask your regular onc about the prilosec. 

I find it hard sometimes to balance the side effects with what drugs we can and cannot take.  I have to take an anti inflamatory that is contraindicated, but if I don't, I cannot life my right arm.  I am hoping that the tendonitis clears up soon, so I can stop taking the Meloxicam, but it is going on 8 months of pain.  So I take the Meloxicam.

Sigh.  On the bright side, it will get better.  I just went on my first flight without having to use the wheelchair at the airport, either way!!!  The change in altitude does something weird to my ability to breathe.  And had enough energy to attend a long weekend of training for being the FRG leader for my husband's unit in the Army.  I had to take some strategic naps, but didn't have to tell anyone I was sick!!!

But this has taken 6 months, so don't give up, it gets better!

Caroline

[Susan61]

Hi Don:  Sorry you were in the hospital, but great news that your heart is good.  Hope you found some relief in knowing that.

Its weird how stomach issues and heart issues can give you the same symptoms.

     I am going for the heart tests this week, due to a lot of stomach discomfort I have been having.  The Cardiologist told me to do the heart testing first and if its not that to check the Gallbladder out.

    I have run into the problem with doctors constantly when I give my list of medications and they have no idea what Gleevec is for.

    Glad your feeling better, and back home.

[donkatking]

Thanks for your kind words Susan.  I went back to work today and put in a full day.  I have slowed down some as I just don't want work to get me also.  The folks I work with are a wonderful bunch of people and I'd rather be working and around them than sit here at home and feel bad.  No problems today except for feeling kinda hot.  Guess that will be some of the things I'll just have to deal with.  I hate not being able to eat when ever I feel alittle hungry.  I take the Tasigna at 5.30am and again at 5.30pm as that goes good with my work schedule and we can have some dinner at a decent hour when we both get home.  I'm very strict with this schedule.   I did take prilosec this morning before I left for work.  Didn't feel too bad while at work.  I've now gotta get some weight off myself and get into an exercise schedule in the evening.  I nice walk will have to do for now.  I'm not into the health club kinda thing.  Those places make me feel uncomfortable for some reason.  I will get the weight down and will diligently try to get through all this.  You were right about the hospitals as when you go to the ER they don't know anything about Tasigna.  Its foreign to them.  I was very pleased with the cardiolgist as he went to school with my onocologist and they know eack other well.  I know if I ever have any heart related problems he's the guy I want to help me.  I sure do hope you get to feeling better.  I know that i haven't been on this stuff very long and I know very little and have alot to learn.  Your kind words really keep a smile on this face and it's always good to hear from you.  It is also nice to get replies for all the wonderful people on this site.  It seems to help motivate me when I read what has been passed out.  So to all I thank you and hope as I learn more I can give some good words of wisdom.  Well i do have 20 years in charm school (retired US Arm) to fall back on.  I hope that soon I'll get through the bad part of this and get back to feeling good.  I am not going to let this defeat me, even if i have a few bad days.  In other words I will suck it in and drive on!!  

[donkatking]

Yes, the doctor did tell me to use the Prilosec.  But again with the info you have provided here I will ask him again about taking Prilosec.  They gave me protonics at the hospital and my insurance will only cover the OTC version which is prilosec.  Anyway right no i feel so much better than I did on Saturday and I hope it stays that way for quite awhile.  One thing I do know is the problem is not with my heart and that's something to be thankful for.

[MJL]

Hi Don,

I have taken OTC Prilosec since day one of starting Gleevec. Fortunately I am an early riser and can take the Prilosec when I get up and wait at least 3 hours before I take my Gleevec. I am  showing a full response to the Gleevec so up to now it has not interfered with my Gleevec working (keeping my fingers crossed)

MJL.

[GerryL]

Hi MJL,

The drug web site I looked at indicated no interaction with Gleevec, but Gleevec is similar to Tasigna - go figure. I think you're right about taking them 3 hours apart, it is what I do with the calcium I take, so they don't interfere with each other.

Gerry

[gunner]

I occasionally take Omeprazole, which is the generic version of Prilosec (if I remember correctly). Since I max out my deductible in January (like many others here), it is covered under my drug plan. If I took the OTC Prilosec, it would come out of my pocket. My doc said that most of the time they eliminate the generic when you can get it over the counter, but because so many people want the 'Nexium' brand name prescription, which is very expensive, the drug plans will still pay for the generic.