91 replies to this topic

[JPD]

Just thought it would be interesting to see all the side effects that we deal with on the daily just to stay alive... not that I would have it any other way. 

 

Taking: Tasigna 300 2x per day

 

Side Effects:

 

Hair loss (legs, stomach)

Occasional brain fog

Flatulance - often of the wet variety

 

[Frogiegirl]

BAHAHAHAHA JPD! That is too mucha Info!     Chemo FOG-check     Hair loss-check   Fatigue-check   Muscle aches-check   Not commenting on the flatulence- check!      450mg of tasigna daily.

[snowbear]

Gleevec 400 mg ~  horrible fatigue, total loss of energy, weakness, nausea, and abdominal pain.  

 

Not too much body pain though.  

[Antilogical]

Side effects on 300mg Gleevec:

Frequent:  Fatigue, edema, "G.I. issues" of all types, blurred vision

Occasional:  Cramping in extremities, nausea, neutropenia,

Seldom:  Rash

[TeddyB]

Great thread

 

Tki:

• Gleevec 400mg

 

Side effects:

• Fatigue, tire easy.
• GI issues (Sharts, pain, nausea etc)
• Brain fog when stressed. (Stress = hell)
• Tinnitus (and dizzy from time to time) stress makes it worse.
• Muscle and bone pain, although not bad, and something i dont really mind at the moment.
• Depressed from time to time (Although not Gleevec related, its a CML side effect for me)
• Increased libido. (Dont ask me why, i think its the body`s way of wanting to ensure the survival of my genes)

Oh, and when starting treatment,  i had a lot more side effects, i have tried to document them all, and the list is long, everything from eye bleeds to rashes all over my body, to loss of hair, skin etc, the usual.........

[dede5]

I guess I jumped the gun and mentioned my side effects on a different thread. Those I mentioned are fatigue, fog, memory loss, lack of motivation and that feeling of being overwhelmed. The latter two I'm not really sure if those are side effects, but never stopped having them when I started treatment. In addition to those, scaly skin and sometimes I feel like I'm molting (hair loss). The only other one I can think of right now is sensitivity to the sun and extreme heat or cold. I spent about 2 hours in the sun at the beach 2 years ago, and spent the rest of the time covered up. I developed about 20 cold sores on my mouth. When we returned home, I researched a little more and found that it does make you sun sensitive. If you're on Sprycel, may need to keep that in mind.

[pammartin]

100 mg Sprycel

 

Unmanageable headaches that took about six weeks to reduce to annoying random headaches

Chronic Fatigue that never really decreased

Burning ear syndrome, (someone somewhere must have had a voodoo doll and held a match to it's ear several times a day)

Hair loss, clumps and spots instead of all over

Hot rashes on cheeks, chin, upper arms

Occasional diarrhea within one to two hours after taking pill

Nausea lasting throughout the day, even when I took pill at night

Joint pain and difficulty with regular day chores

 

I have been off the Sprycel for 8 months now, I still have an occasional burning ear, my skin has returned to normal/whatever that is for a 52 year old female, and the face rashes still plague me on occasion

[gerry]

Still have lingering muscle and joint issues, but doc now tell me I'm getting old, nothing to do with the Gleevec. It still appears to be an issue for some of us who have stopped their TKI.

[Floa7]

Just got increased to 600 mg Gleevec, get my 6 week blood test tomorrow. I was PCRU, but has slowly gone up to 2.8

 

I got eye bleeds over Thanksgiving then again at Christmas.

 

Joint pain, It seems to flare up when I eat turkey or chicken, I say it is the chemicals and preservatives in the birds.

 

I lost a lot of hair when first diagnosed 3 years ago, and on hydroxy and blood levels got to low so doc stopped it. My hair grew back, looks like fur on my arms and legs...... and my scalp hair is nice and thick.

 

also have brain fog, those swarts, Calcium with D and minerals seem to slow it down fairly good. My wrist are always black and blue... bruised, The skin on my arms is thin, takes nothing to just peel skin of my arms.

[Damerault]

300 mlg Tasigna

Fatigue
Awful headaches that have improved over time
Burning, dry skin rash on scalp (thankfully went away)
Dry skin rash on back
Low PLT count which has caused eye bleeds, gum bleeds, bloody nose and bruising - though my body has seemed to have adjusted
Low HGB Anemic probably the cause of the fatigue

[lanadal]

400 mg Gleevec

 

All the following, but not all the time: fatigue, brain fog, nausea about 20 + minutes after I take Gleevec (lasts for only a little while), infrequent hand and foot cramps, infrequent eye bleeds, puffy eyes, joint pain.

 

Also very curly hair!

[Billie Murawski]

Great thread

 

Tki:

• Gleevec 400mg

 

Side effects:

• Fatigue, tire easy.
• GI issues (Sharts, pain, nausea etc)
• Brain fog when stressed. (Stress = hell)
• Tinnitus (and dizzy from time to time) stress makes it worse.
• Muscle and bone pain, although not bad, and something i dont really mind at the moment.
• Depressed from time to time (Although not Gleevec related, its a CML side effect for me)
• Increased libido. (Dont ask me why, i think its the body`s way of wanting to ensure the survival of my genes)

Oh, and when starting treatment,  i had a lot more side effects, i have tried to document them all, and the list is long, everything from eye bleeds to rashes all over my body, to loss of hair, skin etc, the usual.........

Teddy you rascal!

[klf2013]

100 mg Sprycel Started Feb13th 2014.

 

The first day I took it, within 6 hours, I developed a 102.4 temp, headache, nausea and facial redness. Off to the ER for every frickin blood test, X-ray, nasal swab etc...only to find they were all normal and by 8pm, my fever was gone, and I was hungry. My onc does not think that was related at all to the SPrycel!  Doh!  Those exact symptoms continued for several months, but at less severity. I still pop up to about 99.7 around 2pm and get flushed. But the nausea and headache are only occasional.

Other sypmtoms... 

BRain FOg!!!

GI changes...No sharts as of yet! Thank Goodness!  THE Gas....but I live in house with 3 teenage boys and my husband, there is always someone else to blame it on!

FATIGUE! My onc says go to the gym.....?????????????

Periodic rash and facial flushing. I look like a teenager with acne!

Sensitivity to sun and all the "age-defying" products! They make the rashes worse!

All told, could be worse!

[August1]

Sprycel 100 mg

 

Side effects:

• Super speed
• Super strength
• Increased intelligence
• And I've gotten better looking somehow

Wait, that might have been side effects from that second glass of wine ...

 

With Sprycel its' just the opposite. 

• Muscle fatigue
• Headaches
• Fatigue
• Dizziness
• Tinnitus/ear pressure
• Weight loss followed by weight gain
• Mild skin rash that never goes away
• Gas/bloating

Good times, good times. 

[tinman1939]

Taking: 

30 mg of Ponatinib (Iclusig) daily.

 

Side Effects:

Fatigue

Sore joints

Blurred vision
High blood pressure (moderated by blood pressure medication, which I never had to take before)

Itchy scalp and legs

Nodular acne on face, head (alleviated quite successfully by Zenatane (accutane), which has its own list of side effects (sigh)

Memory issues

[LAC1223]

Medicine/Dose:
Sprycell - 100 mg 1x/day, been on this since diagnosis late July 2011
 
Side Effects:
Fatigue... never ending no matter how much sleep I get, Monday morning and I still found myself almost napping at work 
Bone and Joint pain - varies location, last for 2 to 3 days when a severe spell hits
Rosacea around the mouth and nose - face flushes especially with my moods... you can definitely tell if I am upset, haha
Brain Fog - periodic
Susceptible to any illness that comes within 5 feet of me... no amount of zinc or echninacea can stop that cold   
Lately -  daily nose bleeds, started around Thanksgiving

[Kittywatkins]

Sprycel 100mg

Fatigue, vertigo, brain fog, terrible headaches at times, bone pain and muscle, blurred vision. Stomach issues (can't stop farting...hubby sleeps downstairs cause of it. Haha). Depression, puffy eyes in the morning. Sometimes I can't stand certain smells...odd. Hair loss, weight gain, red rash face once a day hot flush. Sensitive to sun. Yucky bumpy arms legs and now chest. Oh and this one is my favorite, don't have to shave my legs or pluck my eyebrows. With that said. I'm off of sprycel 100 for 2 months and almost every side effect has gone away. But in two days I'm going back to sprycel 70mg. Ugh!!!

[rcase13]

Tasigna 600mg/day

 

• Mild Headache that almost never goes away
• Weird vision issues, Odd white flash of light at the extreme edge of my vision. Focus issues especially up close.
• Flatulence... But not as bad as JPDs!... Well maybe sometimes...
• Hair is falling out and is weirdly soft and somewhat curly and brittle. Balding anyway so not that big a deal.
• Extremely itchy head and face
• Brain fog for sure. Trouble finishing sentences and forget names of common items and people I have known for years. Very weird
• Fatigue but not really bad. That might be more because work is BORING!
• Oh and the best side effect is... I am alive and not in the damn hospital! Although I miss the mystery meat Salisbury steak. It was the only thing i could eat. Everything else made me nauseated.

[acl]

Medicine/Dose;

Imatinib (Gleevec) 300 mg.

Side Effects:

• Weight Gain
• Periorbital edema
• Facial flushing, I look like a teenager
• Very dry skin
• Eye Bleeds
• Chills
• Loss of hair
• Fatigue, tire easy
• Rashes
• Muscle and bone pain
• When I started treatment, I had a lot more side effects.
• I love my Gleevec! I am alive!

           Cheers, Adela

[IGotCML]

I'm on Tasigna 600/mg daily

 

Side effects:

Hair loss on legs 99%

Dry skin, mostly on face and scalp

Slight facial rash

Suboptimal energy level from taking a TKI daily