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Side effect "fun" - what you got?


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#21 Billie Murawski

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Posted 13 January 2015 - 01:04 AM

20mg Sprycel daily.

Hi Bill, you definitely know how to handle the side-effects,that's pretty cool. I never thought to look in a mirror, or check out my other atributes when I have a couple glasses of wine. Usually by that time my vision is a bit blurry. I've been out of wine for 4 days now,that is totally unacceptable, it's just been too cold to go to the liquor store,throw in a couple feet of snow and I'm grounded. I sure will be glad when Ron can drive again.

My side-effects, Started on 400mg gleevac 2007, 2010 100mg sprycel  2012 50mg sprycel 2013 20mg sprycel 2015 will find out if still pcr in about a week.

I have all the s-e as everybody else,joint pain getting worse,cymbalta helps,brain fog terminal!

2 years after being on Gleevac I got cataracs had them removed,If you have blurry vision please get your eyes checked. It's not uncommon to get them if you are on Gleevac, I don't know about the other tkis.

And why in the hell am I the only person on this board who still has to shave my legs?      :angry:                  Billie

  My biggest problem all along has been iron deficit anemia. I've had several rounds of iron infusions.



#22 klf2013

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Posted 13 January 2015 - 10:16 AM

20mg Sprycel daily.

Hi Bill, you definitely know how to handle the side-effects,that's pretty cool. I never thought to look in a mirror, or check out my other atributes when I have a couple glasses of wine. Usually by that time my vision is a bit blurry. I've been out of wine for 4 days now,that is totally unacceptable, it's just been too cold to go to the liquor store,throw in a couple feet of snow and I'm grounded. I sure will be glad when Ron can drive again.

My side-effects, Started on 400mg gleevac 2007, 2010 100mg sprycel  2012 50mg sprycel 2013 20mg sprycel 2015 will find out if still pcr in about a week.

I have all the s-e as everybody else,joint pain getting worse,cymbalta helps,brain fog terminal!

2 years after being on Gleevac I got cataracs had them removed,If you have blurry vision please get your eyes checked. It's not uncommon to get them if you are on Gleevac, I don't know about the other tkis.

And why in the hell am I the only person on this board who still has to shave my legs?      :angry:                  Billie

  My biggest problem all along has been iron deficit anemia. I've had several rounds of iron infusions.

I still have to shave mine to Billie! :huh:



#23 dede5

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Posted 13 January 2015 - 01:19 PM

I've already listed my side effects above. I'm new here so not sure of all the ins/outs yet of posting. I've just noticed, in reading this thread and others, that a lot of people are saying their hem/onc denies the connection of the side effects to the tki. This has been a major source of frustration for me since the beginning. At every appointment, his first question is about side effects or problems, but when I tell him what I've had going on, he just says it's probably not connected. The last few visits, when he asks, I just say everything's fine. Does anyone know why they do this? I just figure they have their eye on the ultimate prize (remission) and are not interested in the little details. That's ok if you're the provider, but if you're the patient, it's a little different. I mean, I'm not gonna stop taking it because of side effects, as long as they don't get out of control, but why tell me I'm not having what I'm having. Other than that, I love my hem/onc, and wouldn't think of changing. I mean, he helped pull me out of a really dark place four years ago and I thank him for my very life. Just wondered if anyone else has any thoughts on this...as to why they do that, I mean.


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#24 klf2013

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Posted 13 January 2015 - 02:02 PM

Hi dede,

 

Listening is not a skill they teach in medical school! :wacko: I am a nurse, and I can tell you that sometimes physicians are so honed in on the big side effects that are noted in the literature, that the "little ones" that aren't highlighted don't get their utmost attention.  Physicians want to fix you, and when they can't, many do not know how to handle it. Many times, I was the person in the room with a patient listening to their side effects and frustrations and providing emotional support. Because that is what they teach in nursing school. I can't speak for all oncologists, but as a former oncology nurse, I can tell you, the emotions were the hardest part for them. So maybe denying the connection of certain side effects is easier than addressing them? I don't know. I am sure my onc would like nothing more than to believe all his CML patients are loving the fact that they have the "good cancer" and living side effect free lives on their TKI's. FOr me, he has even said, "your numbers are great, you really shouldn't be tired." Hence, go to the gym. I still think he is a great onc, but I think he has his limitations in how to handle the emotional part of living with TKI's and CML.  Just my thoughts...no scientific evidence behind them! :)



#25 Kittywatkins

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Posted 13 January 2015 - 02:58 PM

I feel the same way! I mean then don't ask if you're gonna say not related to the cml. They really should go on this site and read everyone's side effects! My biggest question is then why do they deny disability for most cml patients. Maybe because the Oncs don't ducument the side effects that we go thru. My side effects are so bad that I demanded to lower my sprycel to 70mg. I've been on a holiday fir two months and I feel like I could take on the world all over again. But as soon as I go on the drug it's all over fir me. Don't get me wrong I would rather live with the side effects than die. But they should be more compassionate and document every single lit ache and pain! I had a nervous break down with my Onc because she was ignoring my complaints. Ugh! Just venting!

#26 LAC1223

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Posted 13 January 2015 - 03:28 PM

The past few posts yet again proves how valuable this forum is to me... I feel very validated in that it isn't only me and I am NOT going crazy.  So glad I have a type of cancer that is treatable, but I get so burned when he asks me how I am doing and then seems to totally discount my reply - I've also felt, why waste my breath or I should tell my Hematologist to read the forum.  I've been trying to advocate going from 100 mg to 70 mg of Sprycel - to no avail.  I am all brave when I am talking to friends and family, but then cave when I am in the office, afraid if I do push it - I could end up doing damage to myself. Funny thing is my original Hematologist who diagnosed me and then retired... who I absolutely loved and felt did listen to me, just came out of retirement and is in the office I go to.  Now I am trying to work up the nerve to ask to change doctors... anyone with tips on how to broach that subject, suggestions are most welcome :D



#27 gerry

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Posted 13 January 2015 - 06:47 PM

Just switch, you're the client.

I changed doctors early in my treatment, my doc was a bit older and I was slightly concerned about how he was travelling, kept telling  me the same story everytime I went. I just asked if they could transfer my records to my new doc, the receptionist was a bit frosty with me. lol My new doc was trained by my old doc.



#28 Billie Murawski

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Posted 13 January 2015 - 10:45 PM

I still have to shave mine to Billie! :huh:

Oh I'm so glad I;m not the only one,we can be miserable together dry skin and all.whoever invented shaving legs in the first place? And why is it okay for men to have hairy legs but not women it must have something to do with pantyhose. Who was it that posed in pantyhose for some womens magazine oh I hate this brain fog, was it a football player or some athlete, I remember the picture but I can't remember the name. Guess I wasn't looking at his face. Years ago I used to go to this little grocery store, a nice elderly man ran it. I went in there one day and as I was checking out he said he had something for me(uh okay!) he reached under the counter and handed me the first copy they got of Burt Renoldys who posed nude for that magazine. He said he figured I'd want one so he saved it for me before they all sold out (which they did). Now whatever gave him the impression I would want that magazine? Well I didn't want to be rude so I accepted the magazine. I was planning on buying one anyway hee hee.  Billie



#29 carrie

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Posted 14 January 2015 - 01:01 PM

8 years on Gleevec 400

  • Fatigue always
  • Brain fog
  • Memory problems
  • Muscle pain in my legs. Sometimes after sitting awhile, my legs will be so stiff when I get up and start walking.
  • Weight gain
  • Eye edema-swollen and puffy eye lids and under my eyes. I have had three eye bleeds.
  • Diarrhea -I think certain foods will cause the diarrhea bouts
  • Thinner hair
  • Joint pain
  • Dry skin
  • Intolerance to COLD temperatures.
  • Hot flashes at night

Other than that, I am alive, and able to continue teaching. I am grateful for an oral pill that keeps me able to keep experiencing life.


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.


#30 DebDoodah22

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Posted 14 January 2015 - 04:24 PM


Initially diagnosed November 2013. Started out on Sprycel 100mg
Which provided a great response But developed PEs,

Now on Sprycel 80mg which seems to be working,but new test results come back next week.

Side Effects:
Brain fog
Hair loss - I keep hoping this will slow down
Headaches but much fewer than when on 100mg, plus no more puffy eyes
Fatigue
Did I mention the brain fog thing?
Weight loss sadly followed by weight gain that doesn't seem to respond to diet
Gas, embarrassing variety
Fever - usually afternoon
Bone pain in feet and thighs

#31 chrissy778

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Posted 14 January 2015 - 08:40 PM

Gleevec 400mg since diagnosis, Aug 2013.

Full feeling, No motivation, Anxiety, Hot flushes at night, Puffy eyes in am if I don't drink enough water with pill the night before. Seriously no major complaints after reading all of the serious side effects I have seen on here. I did have severe muscle and joint pain that started a year after being on Gleevec, it lasted 3 months and went away as quick as it started. 


Its never to late to live happily ever after/ Do not squander time; for that's the stuff life is made of


#32 klf2013

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Posted 15 January 2015 - 10:08 AM

Initially diagnosed November 2013. Started out on Sprycel 100mg
Which provided a great response But developed PEs,

Now on Sprycel 80mg which seems to be working,but new test results come back next week.

Side Effects:
Brain fog
Hair loss - I keep hoping this will slow down
Headaches but much fewer than when on 100mg, plus no more puffy eyes
Fatigue
Did I mention the brain fog thing?
Weight loss sadly followed by weight gain that doesn't seem to respond to diet
Gas, embarrassing variety
Fever - usually afternoon
Bone pain in feet and thighs

Finally! Someone else with the afternoon fever!!!!! I am showing this to my onc!! :)



#33 klf2013

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Posted 15 January 2015 - 10:09 AM

Oh I'm so glad I;m not the only one,we can be miserable together dry skin and all.whoever invented shaving legs in the first place? And why is it okay for men to have hairy legs but not women it must have something to do with pantyhose. Who was it that posed in pantyhose for some womens magazine oh I hate this brain fog, was it a football player or some athlete, I remember the picture but I can't remember the name. Guess I wasn't looking at his face. Years ago I used to go to this little grocery store, a nice elderly man ran it. I went in there one day and as I was checking out he said he had something for me(uh okay!) he reached under the counter and handed me the first copy they got of Burt Renoldys who posed nude for that magazine. He said he figured I'd want one so he saved it for me before they all sold out (which they did). Now whatever gave him the impression I would want that magazine? Well I didn't want to be rude so I accepted the magazine. I was planning on buying one anyway hee hee.  Billie

Ya know, Lance Armstrong shaved his legs....I can imagine how those hairy legs would slow a biker down! :D



#34 Billie Murawski

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Posted 16 January 2015 - 01:18 AM

Ya know, Lance Armstrong shaved his legs....I can imagine how those hairy legs would slow a biker down! :D

Do you think he'll pose for a womens magazine with smooth legs, now that pantyhose is out of style? That is a look I don't like,it is more comfortable but when all is said and done as you age the only part of our bodies that don't totally succumb to gravity is our legs so I think we have to make the most of what we have left! Did you ever hear of a leg lift? :) I was on vacation in Fla and I decided to shave my legs outside,so I'm sitting on the ground and my brother-in-law came home from work looked at me and said do you know you're sitting right next to a mound of fire ants, I jumped up faster than the speed of lightning(superman couldn't have moved faster). Did you remember the name of the pantyhose guy yet? That's driving me nuts.



#35 dede5

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Posted 16 January 2015 - 01:52 AM

 Did you remember the name of the pantyhose guy yet? That's driving me nuts.

I believe the name you're looking for is Joe Namath who played for the NY Jets. 


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#36 Billie Murawski

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Posted 16 January 2015 - 02:02 AM

I believe the name you're looking for is Joe Namath who played for the NY Jets. 

Oh YES YES YES thank you for saving what little bit of sanity I have left. It seems like all I do is try to remember things!



#37 ritan/

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Posted 17 January 2015 - 12:54 PM

Sprycel 50 mg daily

 

side effects:

daily headaches

facial redness

hot flashes

nausea (oh my goodness this one sucks--i take lots of anti-nausea meds to help)

fatigue

chest pain (i've done a billion tests but this just seems to hang on)

swelling--facial, arms, etc.

weight gain (ugh--working on changing my diet completely in hopes of changing this)

recent diagnosis of carpal tunnel--not sure this is actually a side effect but i'm inclined to think it's related

foot pain

my nose goes numb or twitches several hours of most days.

there are more but i'll stop....

 

my biggest peeve lately is that my onc won't listen and spends all his time telling me "that's not really related". my gp says that the nose numbness has to be a side effect, but my onc says it's not. we've done endless testing. 

 

venting helps. :D



#38 judithpiffner

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Posted 18 January 2015 - 09:08 PM

Hello all,

 

         I have been on Gleevec for 4 months now. I have many side effects:

           Rash

           tummy upsets

           muscle pain

           my face some days scare my children (swollen and puffy)

        But recently I have been hospitalized with pneumonia, which my drs. say is a side effect of gleevec.

        I have gotten pneumonia again or it never got better.

        I have not seen this listed as a side effect for anyone else. The real question is would I be any better

        off with another drug.

 

        PS Tasigna gave me pancreatitus.

 

        I feel like the drs see me as a whiner, after all my numbers are good!

 

Thanks Judy



#39 Billie Murawski

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Posted 18 January 2015 - 09:48 PM

Hello all,

 

         I have been on Gleevec for 4 months now. I have many side effects:

           Rash

           tummy upsets

           muscle pain

           my face some days scare my children (swollen and puffy)

        But recently I have been hospitalized with pneumonia, which my drs. say is a side effect of gleevec.

        I have gotten pneumonia again or it never got better.

        I have not seen this listed as a side effect for anyone else. The real question is would I be any better

        off with another drug.

 

        PS Tasigna gave me pancreatitus.

 

        I feel like the drs see me as a whiner, after all my numbers are good!

 

Thanks Judy

Hi Judy, 3 weeks after my dx I was hospitalized with pneumonia, I was on 400mg Gleevac. You are never alone on this board. Billie



#40 Billie Murawski

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Posted 19 January 2015 - 12:03 AM

Sprycel 50 mg daily

 

side effects:

daily headaches

facial redness

hot flashes

nausea (oh my goodness this one sucks--i take lots of anti-nausea meds to help)

fatigue

chest pain (i've done a billion tests but this just seems to hang on)

swelling--facial, arms, etc.

weight gain (ugh--working on changing my diet completely in hopes of changing this)

recent diagnosis of carpal tunnel--not sure this is actually a side effect but i'm inclined to think it's related

foot pain

my nose goes numb or twitches several hours of most days.

there are more but i'll stop....

 

my biggest peeve lately is that my onc won't listen and spends all his time telling me "that's not really related". my gp says that the nose numbness has to be a side effect, but my onc says it's not. we've done endless testing. 

 

venting helps. :D

When I hear that I just want to say,Well you take the medicine for a month and see what s-e you have.






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