I have been feeling really bad the past few days. I currently take Tasigna at the 150 mg strength, 4 pills a day, twice a day. Been having a constant cough which I can somewhat control with cough drops and my stomach just seems all messed up. Can't describe it better than that. I can't sleep except with the use of Lorazepam, which the onc prescribed for me for a short term. Think I have two pills left. The stomach issues are the worse of all of it. Back pain and all the rest I can tolerate. The lack of sleep and the stomach issues really keep me on edge. I have been working and that helps me try to keep my mind off what I am feeling. I went to work on Thrusday with only 1 1/2 hours sleep. I wonder if I could have the onc make reduced this dose by half? My blood count was good the last time I went in of course I believe there are alot of other things thay look at also. I had taken some Prilosec OTC with the Onc's blessing but quite using it early last week as it if suppost to be for 14 days. Probably something else I should take up upon my next visit in three weeks, They even ran an upper GI on nme in the past cpuple weeks and foung nothing. The gastrointerologist gave me a drug to use to coat the espho but I went online and it actually shoiuld not be used with Tasigna. I told my wife this morning this is possibly the worst two months I have ever had in my life since being diagnosed with CML. You have a few goos days and the rest you just feel like crap. Anyone taking this med that has any good suggestions I'll listen and take up with the ONC upon my next visit. Think I may have to get that appt moved up. Don't think I'll manage 3 weeks without going bananas. Trying not to go to the ER as when you are there you can tell them you have CML and have the drug in your hands and they just don't know anything about it. It's not their fault and I don't need needless tests that tell me I am OK. Trying hard to be upbeat.
A Few Questions About Tasigna
Posted 04 April 2011 - 09:32 AM
Hi - I haven't really had what you have as far as the cough goes. I know in the winter, I kept getting sick - but I just chalked that up to me being tired making my immune system weaker. Not sure if it is true - but had to blame it on something! I didn't have too many stomach issues - my major complaint when I started it was headaches and exhaustion and a few heart palpitations which scared me more than anything (all were fine).
How long have you been on the tasigna? I would def. talk to the onc about it and see if there are some options out there for you.
Good luck .
Posted 04 April 2011 - 11:32 PM
Oh dear, Don, it gets better.
Not back to where you were before dx, but it does get more manageable. I spent the first 3 months on the couch sleeping and writhing in pain from my legs with tears pouring down my cheeks, swallowing morphine and dilaudid like candy, I couldn't believe this was my new life. Slowly (and I mean slowly) things have gotten better. There are still horrid side effects, but they seem to cycle in and out, and I don't get them all at the same time (thank heavens!), but I can do more and more.
Just hang in there, and go to see your onc on a regular basis. I was seeing mine on a weekly basis for a couple of months, then finally graduated to every two weeks, just recently getting to the every month mark. If I remember correctly, you are very newly diagnosed, I am all of almost 7 months in. If you have a cancer center near you, take advantage of everything they offer.
If you can take some time off from work, that can be the best. I think you work for the VA, do you have the ability to take a month or two off without hurting your job? Sometimes taking the time to really be sick is the best way to get better. When I talked to the pyschologist at the cancer center, she said you have to realize that you have no reserves left, fighting the cancer has taken everything you had, so when you are tired, you are done. There is no way to "push through". And that giving in to that idea is the best way to take care of yourself. I was busy feeling guilty about being sick and not being able to work more.
I have realized more and more that the rest of the medical community is just plain scared of TKI's and they know nothing about them. So now I really do just go to the cancer center for everything. They have all kinds of supportive doctors that understand what your side effects are and what they are doing to you.
Hoping you feel better soon.
Posted 04 April 2011 - 11:35 PM
Caroline you still up?
I'm trying to catch up with you.
Posted 04 April 2011 - 11:39 PM
yes. Was just about to troll for happy camping info............
Posted 04 April 2011 - 11:48 PM
are you okay?
Posted 04 April 2011 - 11:52 PM
Yes. Just have a little bronchitis, been to the doctor and am on drugs.
This too shall pass..............supposedly. One friend asked how I got this too, and I replied "someone coughed within a 10 mile radius of me."
I get everything.
Aren't I lucky???
Posted 04 April 2011 - 11:57 PM
OH Year you are Lucky,
Don,t go camping without me I have cabin fever.
Scarlett O'haras last words were As
God is my wittness I will never go hungry again.
Posted 05 April 2011 - 05:14 AM
Past few days haven't been too bad. Felt extremely bad Friday evening into Saturday and it seemed to level off. I called the cancer center and talked to them about the cough. The cough is something I have had for a very long time and they said to go ahead and see my PCP, who is very good with things. I need to call for an appointment today. Through all this I have lost about 30 pounds which can't be bad. My work has been just wonderful and are setting me up so if I have a bad day or two I'll be able to work from home. When they offerd me this option I almost cried as no job I know of would have done the same. I'm not one to want to sit home and I feel best, even when I'm feeling bad being around my friends at work. I am going to get this cought looked at and hope it may be no more than an allergie. It just a nagging cough and I suck on cough drops to try and keep it down, but now with CML it can be anything. The pain in my joints and back pain I do believe is a side effect and I'm praying that with time this will all get better. The tingling in my hand and foot have just about disappeared so maybe your body adjusts. It does depress me that I have hardly ever taken medication for anything my whole life and now this. I think it seemed like avarything hit me at one time last week. I felt so bad and miserable. Guess I will have alot of these moments. I have adjusted taking Tasigna to 9am in the morning and at 9pm at night. I have thought all kinds of time out and this seems to be the best. I get up at 4.30 in the morning to check my sugar and that gives me time to have alittle cereal to get the day started. I check my sugar between 8.30 and 9.am and know to take the tasigna again. I go to work between 6 and 7 am in the morning. Sorry my original post was like it was and I apoligize for it being rambling but I was feeling so bad. Like I told my wife the past two months seem to have been the worst I have ever had and I just feel so beaten up. I know things will get better. I have more questions for the onocologist on my next visit. Oh The trouble sleeping has to be the worst of all of this. I was getting may two hours a night if I was lucky. I don't know how I was getting through the day as I was so tired. I had some Lorazepam and if I just use it once a day about 3 hours before I go to sleep I have a good sleep. When I don't use it I can't sleep. I had them get me enough pills till my next doctors visit and will see about getting a good sleeping pill that won't effect the Tasigna. Don't want to stay on lorazepam as it is very habit forming but then so are sleeping pills from what I read.
We have made it over to get the camper straighten up and if I'm up to it going camping. The weather has been so bad and I just wish it would warm up and stay sunny. I did manage to check in on our lake property and I have to get things there starighten up also. That's my weekend retreat when I don't want to be home on the weekend. I have a teenager hired who mows both of the lots down there and I gave him cash enough for two months mowing. He does a good job and saves me a 75 mile trip to do it myself. If I had felt better the day I went down i would have spent the night. Well, I hope that everything with this Tasigna will level out.
Posted 05 April 2011 - 07:09 AM
Hi Well this is only my 5 th day on Tasigna and I was doing well the first 3 days then pow. I'm not sleeping much because I'm in so much pain. My back pain and stomach pain is unbearable. And the mouth soars its so hard to eat. I'm calling my onc today I'm not going to make it till next wed and he is off tomorrow I'm hoping to get some pain pills till this subsides some. I'm really tired with this. I was taking Gleevec for 8 months till it stopped working and it took me so long to get used to that and finally start feeling better then had to change drugs.
We are all thinking of you and right there with you ! I work full time too and have to come in every day I wish I could take a little time off to get through this initial side effects. Seems with people on line it does get better after the first couple months. So just hang in there. And I'll try to hang in there with you !
DX 5-2010 Started normal hydra then Gleevec for 9 months stopped working
Tasigna after 5 pills pancreatis numbers jumped up quickly
Started Sprycel 100, 8-2010 for a 3 years went down to 50 mg numbers at one point really jumped up quickly
currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then
After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now
numbers lower then ever go figure I've never been this low of a number
last 2 tests .0686 and .0181 !!
Posted 05 April 2011 - 01:56 PM
This is the best place of all to moan and be scared about what is happening to you. I am glad you are feeling even slightly better. Not getting enough sleep is so hard on all your systems if you are feeling well, that for us, it is overwhelming. Just keep pestering your onc about stuff and hopefully they will work out all the kinks in how to treat all of your side effects.
I, too, was not taking any medication daily, and now have a shoe box full on the kitchen counter that I paw through 3 or 4 times a day. And that is a huge adjustment emotionally.
Yes, camping season is coming. I am trying very hard to get some client work done today before allowing myself to take the trailer down and get the bearings packed. MUST get work done.
My favorite Aunt works for the VA, and they bend over backwards for her too. Seems like just a wonderful place to work.
Heres to a good day for all of us!
Posted 05 April 2011 - 03:32 PM
Those were Scarlett's last words before intermission. Her last words were "After all, tomorrow is another day."
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
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