20 replies to this topic

[snowbear]

Where do you draw the line between putting up with expected side effects vs. intolerance of the medication ?  The Gleevec is making me sicker than I've ever been in my life.  I've had to stay home twice now in 3 weeks because of it.  My stomach feels like a washing machine and if I move, I feel like throwing up (but I haven't).  I get pains under the center of my right ribcage and it goes towards the mid-back.  I have no appetite, but I force myself to eat something at least when I take the medication.  Nothing tastes good - even toast and a banana taste like cardboard.  Water makes me more nauseous. 

 

My next onc appointment is February 10^th.   Is this something that would warrant a change in medication or only if something really bad happens like my liver enzymes shoot thru the roof or I start throwing up blood and the rest of the blahness is the price we pay to say alive? 

 

Last question, are the other TKI's easier on the gut?  No sense in even considering switching if they're all going to make me sick.

[carrie]

I have been on Gleevec for 7 years. I take the one 400 mg. pill right before I go to sleep. I am lucky in that when I hit the bed, I am exhausted from teaching all day plus the illness in itself, so I fall right asleep and don't feel the stomach aches..... have you tried taking it a bedtime with a large glass of milk or water?

[klf2013]

I am on Sprycel. I felt nauseated intermittently for the first month. I never did toss my cookies.  My doctor didn't want to put me on Gleevec, because he felt SPrycel had a faster response rate with less side effects.  Just saying...

 

Any of these TKI's take a bit for the body to get used to....perhaps this is common for GLeevec?

[hannibellemo]

Snowbear,

 

I started out on Gleevec but ran into liver toxicity at 9 months. Other than that and the normal GI issues I had no complaints. So, I'm sorry I can't really help you there. 

 

i would like to say before you assume what you have are side effects, unless you no longer have a gallbladder what you are describing is pretty classic gallbladder disease. I'd want to rule that out first.

 

Someone else said it in another post. Once we have been diagnosed with a serious condition we tend to think that everything else that happens to us is associated with that condition. Not true!

 

There is no crystal ball that will tell you how you will react to another TKI. I loved Gleevec, I hated Sprycel, but I pushed my way through the first 6 months and survived, but there were periods when I wasn't sure I would.

 

No doubt, quality of life is important, only you can decide when enough is enough and have that discussion with your doc. I'd get the gallbladder thing ruled out first though. 

[snowbear]

I should have mentioned that.  I had my gallbladder out 2 years ago.  The pain on the side is not as bad as that was, but the nausea and feeling sick to my stomach is.

 

The impression that I got from my Hema/Onc is that CML is no big deal and whatever side effects I may get is still better than traditional chemo & BMT.  I don't argue that but if I were receiving chemo in a hospital, I wouldn't even have to make my own toast and tea let alone trying to work full-time, keep my house clean, laundry done, and function day to day.  I can't just curl up in a ball under the covers as much as I would like to!

 

So I don't want to complain and be difficult, but if there's an option that I might tolerate another medication better, I'd like to consider it.

[Marnie]

Snowbear. . .sounds like you need to cut yourself a break.  Housework and laundry have dropped way down on my priority list.  I think you need to find some ways to reduce your stress and make some time for YOU.  Easier said than done, I know.

 

Certainly, you should talk with your oncologist about medication options.  Keep in mind, however, that all of the TKIs have their own set of side effects, so if you switch you will likely swap one set of side effects for another. 

 

I switched from Gleevec due to sub optimal response, and I was glad to dump the Gleevec side effects, which definitely had a negative impact on my quality of life.  Not so bad that I was miserable, but enough that it was problem (though not a huge problem).

 

Sprycel was great for me, initially.  I had a very quick response and got to PCRu within a year, which had never happened on Gleevec.  My quality of life improved quite a bit.  However, a couple of years in I started having pleural effusion problems.  Am I better off than I was on Gleevec?  I'm not sure.

 

So I guess my point is, I think it's wise to look at all of the TKIs as potential medications, and take a good hard look at your current quality of life.  If things are really miserable, then consider making a change. . .but be prepared to deal with whatever the new TKI might bring to the table.  Quality of life is important.  If you're too miserable to enjoy life, well. . .then what's the point?

 

Good luck,

Marnie

[Jerry.s]

I had that pain for the first three months lost 25 pounds for the same reason. My spleen caused some of that pain similur to what you discribed but that went away after two months but than I developed some wicked acid reflux which I control with Prilosec .. Tried to wing myself off of it and been hurting I the throat ever since . It's getting better now that I restarted the Prilosec . It's gets better I was constantly at my Onc office complaining about everything but he didn't seem to care .

[acl]

Hi SnowBear, I take 300 mg. Gleevec at 5:30 p.m. with my dinner. I started the Gleevec March 2014. At first I had a lot of side effects, not all at once, but now I only have bone pain off and on, it's not too bad, I have more pain at night. I massage my leg at night and it helps. I have not taken any pain meds. I bought ALEVE, but have not opened the box. I have a dry face, but I use Olive Oil.  In March 2014 I had no appetite, but that did not last long, I have put on 7 lbs., I really enjoy eating. I am trying to lose the weight that I put on, I make smoothies of spinach, kale, pineapple, strawberries and a slice of lemon and 1/2 c water that I drink between meals. I have to lose the weight, I don't like to be overweight. I have bad days and good days. I love my Gleevec.

Cheers, Adela

[Damerault]

Snowbear, stick with it. The side effects will get better. It takes awhile. I was diagnosed in Nov 2013 and have been on different doses of Sprycel and now Tasigna. My side effects are almost gone. You will feel better again. Yoga and meditation worked for me and I am on medication for my headaches. I am started to exercise again and getting my energy back. Good luck. Diane.

[Billie Murawski]

Hi Snowbear,

 I know so well how you feel, I was on Gleevac 3 years as I told you before.I was so sick and at that time 2007 Sprycel and Tasigna were not the first drug of choice because they were so new. I had gastrointestional and vascular problems before so I was on several medicines that I had to take also. I probably wouldn't have been so sick if I wasn't on so many meds. The only thing my gi doctor told me was to take probiotics my cardiologist said he couldn't help me I had to take the meds he dx also. I did go on the cymbalta 60mg 3 weeks after dx when I was in the hospital with pneumonia and I am still on it. You can't mess around with cymbalta you have to take it every day because it takes time to build up in your system about 8 weeks to start getting the full effects of it. There are pros and cons about cymbalta going around now, I am sure it helped me to cope and I think it really helped me with joint pain. I never had any and when I found this board 3 years after my dx a lot of people said they had a lot of joint pain. I'm getting a lot of pain now but I really think this cold weather is getting to me, I also have to take bloodthinners so I feel like a walking popsicle. I have also been under a lot of stress for the last 2 years so I'm pretty tensed up all the time. Now that my husband is getting better I'm starting to relax a bit. It will take me a while but I'll get there. Right now you are going through so many emotions and your body is getting slammed by a powerful medicine if I were you I would ask my pcp for a mild nerve pill to help you cope. You said 2 weeks ago you felt like you could run up 4 flights of stairs I couldn't do that when I was 16.

  Like Marnie said you are putting to much stress on yourself. I was that way, boy am I over it now. I think I had ocd when it came to my house, everything had to be perfect, neat, I would panic if somebody pulled in my driveway and something was out of place. I had to get over that I can actually go to bed with a couple glasses in the sink, and I let Ron straighted up the bed everyday without me being right behind him doing it again. I don't think you have a lot of support at home, but you have plenty of it here. So go easy on yourself and give the G a little more time, maybe your onc will make you feel better Feb. is almost here.                                          HANG IN THERE pretty soon you'll be giving a newcomer advice and encouragement we always have different things to share with each other. I wish I would have kept a diary to remind myself that I did have a lot of good days, I'ts sad we only remember the bad ones.                                                 Billie

[Trey]

A number of people split the daily Gleevec dosage into two times per day.  I did that almost from the beginning.  I believe it helped reduce side effects.  Splitting can be done with the 400mg pill, but is easier if you get the 100mg tablets.

[hannibellemo]

Snowbear,

 

I know what you mean when you say you were essentially told that controlling CML was as "easy" as taking a pill. I'm pretty sure we all bought into that only to find that it might not be quite that easy.

 

I agree with Marnie, (we all agree with Marnie, it's too scary not to what with bears and moose and such but that's another story for when you are feeling better) you need to take it easier on yourself. When I switched to Sprycel there were days I sat in my office with my door locked and prayed no one needed me for anything - I felt so bad. It got better.

 

I know you feel like you should be able to do everything you did before and it's very likely in a year or so you will be able to. Right now you need to prioritize where your time goes and most of it should go to you! It may be difficult for other people to realize that you don't feel good because you probably look like you feel pretty good, even when you don't. 

 

You may need to set some people straight. For instance, I'm never sick, it's so damn irritating that with my below normal blood counts I am apparently as healthy as a horse, except for CML. There are very occasional days I don't feel good, though, so I stay home. People used to ask me if I "felt better" when I came back the next day and I started telling them I don't get sick, I get "side effects". They all know I have CML and I've trained them evidently because they don't think I'm "sick", they think I'm "brave". I almost feel bad about that - almost!     I don't abuse it but I don't drag myself to work either when I feel like crap. I'm not a martyr, most people on here know, I can whine with the best of them.

 

So, take it easy on yourself when you can, ask for help, accept help (I know, that sucks). It will get better and if it doesn't then you know it's time to look at another TKI.

[acl]

Hi Snowbear, I hope you are feeling better. I hope your appetite is improving.  When I first started taking the Gleevec, it took me a while to get my appetite back.  For myself I can not take the Gleevec close to taking other medications, because it will upset my stomach, I have to have a little solid food with my medication, otherwise, If I just have soup and crackers I will get an eye bleed. For me this drug has been a miracle, I am very grateful to Dr. Drucker!

 

March 2014 when I was diagnosed and I joined this forum, I found the members of this board to be very helpful with their comments and I am extremely grateful!

 

Take care

Adela

[Billie Murawski]

Hi Snowbear,

Everything Pat said is true,(even about Marnie and her Moose,) like she said thats for another time. My family and friends who know about my cml are always telling me how good I look, that drives me crazy because there are some days I just feel awful but I look so good. I have no idea how I made it through Dec. and Jan. when my husband was so sick he is so much better now, but I basically still handle everything. He used to help me a lot but when he got sick 2 years ago I was on my own. I haven't felt good all week so I have basically just been lying around, Ron has a visiting nurse that comes once a week, that's over now but she came yesterday and I felt like crap but I look so healthy, she made me feel like I wasn't taking good enough care of Ron, I'm doing all the heavy work right now, like drag the garbage can out our long driveway in 8 degree weather through a foot of snow. Try not to let it get to you, we understand,that's what is so great about this forum we can get on it and vent and we all understand how you feel no matter how good you look. Like Pat said you have to put yourself first, and just do what you can do.        Billie

[ritan/]

snowbear: it'd help to know how long out of Dx you are. BUT: given that traditional treatments for CML generally include BMT and the typical survival rate for transplant is still pretty bad (http://bloodcell.tra...a/survival.aspx), that's really not an option unless it's the only option.

 

i'm not saying there's good choices here. i was on gleevec for a year plus, then switched to sprycel for a year and am now on a cut dose of sprycel for a year. i've been undetectable for almost 2 years and hope to do a trial of no meds starting in June. 

the half dose of sprycel has reduced my side effects some. i know some people do less (as low as 20 mg i think) and if the trial doesn't work out i'm aiming for that. good luck.

[snowbear]

I'm not sure that my GI problems are *just* from the Gleevec or a combination of meds.  I tried taking it at lunch several hours apart from my other meds and it did reduce the nausea and stomach pain, but I had bad head fog and got too tired during the day.  Taking it between dinner and bedtimes works out much better that way.  

 

The worst of the side effects occur in the morning after I take Linzess (IBS-C med).  I had to switch from Elavil to Cymbalta because it made me so sick and I have to be really careful with narcotic pain meds because they make me sick as well with the Linzess.  Yesterday morning I woke up and felt okay until I took the Linzess after I had my coffee.  Within minutes, I felt sick.  Linzess is supposed to be taken on an empty stomach and that is how i take it, but I wonder if my stomach is just too sensitive (I have chronic gastritis and have had one ulcer confirmed).   So, I think I'm going to try eating a little bit of oatmeal first thing tomorrow morning and see if that helps.  I may also try splitting the pill in half, but I'll wait until next weekend if I'm still feeling unbearably sick.

 

Thanks for all the advice.  I'm sure I'll get thru this and find a way to live with both the CML & Gleevec.  

 

~Amy

[ritan/]

i take anti-nausea meds everyday with my sprycel. maybe talk to your onc and see if you could also do this? (the first day i took sprycel i spent all night throwing up and/or laying on the bathroom floor. it was the worst)

it's amazing how much these "minor" side effects can kick your butt. you'll get through this. 

[SUE]

Hi Snowbear,

 

As Marnie, Pat, and Billie have said, you need to take it easy and not expect that you can do everything you could do before diagnosis. CML is not a walk in the park, despite what some oncologists would have you believe.  Yes, we are fortunate that we have medications that keep us alive, but those medications are very strong and can cause serious side effects.  

 

As far as switching meds, at some point you might want to do that.  I was on Gleevec for 6 months.  After 3 months I developed a very bad rash--big pink blotches all over my body.  Also, my nails fell off and a lot of my hair fell out.  I was very hesitant to switch meds,  but after 6 and 1/2 months on Gleevec and a 6 week "vacation" from the meds, I switched to Sprycel.  I started out with only 50 mg because It seemed to me that I had an usually strong reaction to these meds.(The onc had never seen the kind of rash I developed on Gleevec).  I was very nervous about switching, but it has turned out well.  I do have side effects--periodic muscle pain, very dry skin, weird bacteria on some of my fingernails,  periodic fatigue--but it has been much better than Gleevec for me. 

 

I definitely know it's very scary to try something new.  But after a period of time, if you're not improving, you might want to consider a different med.

 

Keep posting to the board.  Frequently family and friends don't understand how it is, but all of us here do.

 

Sue

[snowbear]

A strange thing happened this week....

 

About a week ago, I ran out of Dexilant.  I was waiting until payday to get my prescription refilled and just getting by taking Zantac twice a day (sometimes 3) until then.   The past few days, I've had no nausea, abdominal pain, or feeling sick other than a little breakthrough heartburn.  But, it's nothing like it was a week or so ago!   I wonder if the interaction between the PPI & TKI was making me sick and not the Gleevec itself.

 

I'm going to talk to my gastro doctor about alternatives to the PPI to manage the reflux.  I do have a small hiatal hernia, but doctors never seemed too concerned about it. 

[Jerry.s]

I have so many of the same gi issues but mine are at my throat . I stopped drinking coffee and that's helped a little but I still get bad heart burn even with the Prilosec I take . I also have an appointment with a gi doctor on the 10th of he give me anything that helps I'll let you know