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Side effect "fun" - what you got?

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#1 JPD


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Posted 11 January 2015 - 12:11 PM

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 :wacko:


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%

#2 Frogiegirl


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Posted 11 January 2015 - 12:23 PM

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

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.

#3 snowbear


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Posted 11 January 2015 - 01:07 PM

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


Not too much body pain though.   :)

#4 Antilogical


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Posted 11 January 2015 - 02:05 PM

Side effects on 300mg Gleevec:

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

Occasional:  Cramping in extremities, nausea, neutropenia,

Seldom:  Rash

Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.

#5 TeddyB


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Posted 11 January 2015 - 02:29 PM

Great thread :)



  • 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.........

#6 dede5


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Posted 11 January 2015 - 03:22 PM

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.

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

#7 pammartin


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Posted 11 January 2015 - 03:23 PM

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

#8 gerry


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Posted 11 January 2015 - 06:39 PM

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.

#9 Floa7


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Posted 11 January 2015 - 07:10 PM

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. ^_^

1 2012 CML detected Started Gleevec 400 mg

In nov 2014 my pcr started to rise by Feb I stopped Gleevec and went onto

2 2015 Tasigna 600 mg/day

I have been PCRU for 2 years and stopped Tasigna 4 7 2017

5 8 2017 results 0.008

5 30 2017 results 0.028 

6 30 2017 results 0.3, I have restarted the Tasigna because it went above 0.1 


My son

11 2011 CML detected Started Gleevec 400 mg

He went 2 1/2 years on gleevec and lost PCRU

Started Sprycel went PCRU for 2 years and stopped the Sprycel, went back for 3 month checkup and PCR was 8.0

He went back onto Sprycel and now is PCRU again

3 16 2017 results 0.008

6 1 2017 results 0.002

#10 Damerault


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Posted 11 January 2015 - 09:54 PM

300 mlg Tasigna

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

11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.

Remain on full dose Tasigna

Major p210 International Scale

05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000

Be well, Diane.

#11 lanadal



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Posted 11 January 2015 - 10:21 PM

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!

My facts: 

Diagnosed 2003 and have taken Gleevec 400 mg until recently. I am now taking 200 mg and will go have PCR testing every three months to see if all stays relatively stable. Have bounced between PCRU, PCR "weak positive", and .005 ever since.  Had a brief rise in PCR in 2005 for which I added Interferon (Yuck!) for 6 months which sent me back to previous levels and left me with neuropathy.

#12 Billie Murawski

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Posted 12 January 2015 - 12:21 AM

Great thread :)



  • 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!

#13 klf2013


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Posted 12 January 2015 - 10:05 AM

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! :huh: 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!

#14 August1


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Posted 12 January 2015 - 02:00 PM

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.  :P

#15 tinman1939


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Posted 12 January 2015 - 02:10 PM


30 mg of Ponatinib (Iclusig) daily.


Side Effects:


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

#16 LAC1223


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Posted 12 January 2015 - 03:52 PM

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  :blink:
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  :angry: 
Lately -  daily nose bleeds, started around Thanksgiving

#17 Kittywatkins


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Posted 12 January 2015 - 04:09 PM

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!!!

#18 rcase13


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Posted 12 January 2015 - 04:31 PM

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.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg


Cancer Sucks!

#19 acl


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Posted 12 January 2015 - 07:58 PM


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

Diagnosed March 2014

Imatinib 400 mg. Summer 2014, Imatinib 300 mg.





06/01/16     0.18%

24/02/16     0.11%

23/03/16     0.13%

12/05/16     0.07%

13/07/16     0.17%

12/09/16     0.12%

21/19/16     0.15%

23/11/16     0.09%

20/12/16     0.11%

19/01/17     0.07%

21/02/17     0.07%

20/03/17     0.06%

20/04/17     0.06%

20/05/17     0.07%

20/06/17     0.06%

23/08/17     0.08%

22/12/17     0.04%





#20 IGotCML


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Posted 12 January 2015 - 11:29 PM

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

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