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Side effect "fun" - what you got?


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#41 rcase13

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Posted 19 January 2015 - 04:39 PM

Yeah what is up with this! I am not admitting I have this symptom but would be interested to the solution... You know just in case I do develop this particular side effect.

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!


#42 hannibellemo

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Posted 19 January 2015 - 05:15 PM

rcase,

 

The flash of light at the edge of your vision should not be ignored. How old are you? I ask because a couple of years ago on the 4th of July (when I couldn't get into the eye doctor) I was standing in the kitchen drinking coffee, minding my own business, when all of a sudden I developed a couple of large floaters in my right eye and I was having flashes on the peripheral edge of my vision. It was very apparent when it got dark.  

 

I knew that could signal a retinal tear so I called the eye doc next morning and they wanted to see me that day! I had also had "showers of tiny dots" in my field of vision, too, the previous day.

 

As it turns out my retina was fine. What I had experienced was at precipitous posterior vitreol detachment with no retinal tear. When this happen all of a sudden like mine did, rather than gradually, it can easily tear the retina. The flashes of light are something tugging on your retina. The doc said it would very likely happen the same way with my other eye and I would continue to have flashes until the sac completely detaches.

 

Happens to people mostly in their 50's, 60's and older.

 

If you haven't, I recommend having it looked at.

 

Good luck!


Pat

 

"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>


#43 Sneezy12

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Posted 20 January 2015 - 05:41 AM

Pat,
I had exactly the same thing-PVD. As you say , it should be treated as a medical emergency in case it's RD. Frank

#44 rcase13

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Posted 20 January 2015 - 01:51 PM

I have an appointment in the morning. The rolling flashes of white light started about the time I started Tasigna. I just assumed it was a side effect... Oh well. What else can go wrong? I am only 44 and feel like I am falling apart.


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!


#45 Antilogical

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Posted 20 January 2015 - 02:14 PM

We start falling apart the day we are born, but after we're diagnosed with something significant, every change thereafter seems like it's related to the previous diagnosis.

 

Did that make any kind of sense?


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.


#46 rcase13

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Posted 20 January 2015 - 02:23 PM

Well it is good we have this thread. At least now we know rolling flashes of light around you peripheral vision is NOT a side effect! LOL maybe we should do like the doctors and deny that the things we have are not side effects and pester our docs to fix it!

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!


#47 carrie

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Posted 20 January 2015 - 04:38 PM

When I had rolling flashes of light around my eyes, I went to the eye doctor and he told me that they were ocular migraines, which is weird because I do not get migraines.  They went away. I had them for several weeks.


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.


#48 rcase13

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Posted 20 January 2015 - 06:07 PM

Well I certainly have the headaches and eye pain. I also have lazy eye and psoriasis... Can I blame those on the TKI as well...

I think I have bad genes...

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!


#49 Antilogical

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Posted 20 January 2015 - 06:13 PM

At work, I try to blame my snide and sarcastic comments on the TKI.  So far, I am still employed....


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.


#50 Busa

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Posted 20 January 2015 - 08:47 PM

Just as an info aside, I have gone blind in my left eye from "a stroke" of the eye.  This happened in Feb of 2013, I first noted a small gray spot one evening and made an emergency optometrist visit in the morning and it was too late.  So before warned. 



#51 hannibellemo

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Posted 21 January 2015 - 08:39 AM

Carrie,

 

My old boss had ocular migraines. I'd never heard of them; he said they are classified as a painless migraine but they can cause some very strange visual anomalies.

 

Pat


Pat

 

"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>


#52 rcase13

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Posted 21 January 2015 - 10:08 AM

Well I saw a retina specialist for the intermittent flashing lights. He said I have some stretching of the retina that is common/normal for people that have extreme high nearsightedness. He does not think this is causing the flashing lights. I also have a lazy eye that causes me a lot of eye strain/fatigue. He thinks the flashing is caused by this or a combination of the lazy eye and/or the Tasigna/CML.

Whatever is causing it my Retina is fine. He told me what to look out for (floaters/vision changes) and to call if if anything changes.

So the jury is still out in regards to Tasigna/CML causing intermittent flashes of white light. Too bad it isn't colored lights. I could have my own private disco!

Thanks for the advice and getting me to see a doctor. I see another doctor next month for the lazy eye. He thinks they can help with that and that is huge. All other doctors told me I would have to live with the lazy eye.

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!


#53 hannibellemo

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Posted 21 January 2015 - 07:43 PM

rcase,

 

Glad to hear it and now you know you aren't officially falling apart! Also, that is very good news about being able to do something for the lazy eye. I also have wretched vision, thank heavens for thin plastic lenses. When people try my glasses on, yes, for some reason adults still want to do that - it's like they don't believe me when I say I'm nearly blind without them, they usually blurt out, "How can you see with these?" I just smile!


Pat

 

"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>


#54 Antilogical

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Posted 21 January 2015 - 08:47 PM

Ocular migraines:  I used to get the painful migraines, but it switched to the visual disturbance kind a few years ago.  When I see a multi-colored bicycle chain rotating in front of my eyes, I know to either take some naproxyn, or pull over if I'm driving, because the tunnel vision is not far behind.  At least it doesn't hurt anymore.  So why take a pain med if it doesn't hurt?  The flashy thingys are the optic nerve's way of saying OUCH!  Pain meds really help it.

 

Flashing lights:  Like Pat, I did not have a retinal tear, as first thought.  I did have the loose bag of vitreous fluid in the eye, banging into my optic nerve.  (Yes, that's what the doc said, and she even drew an exact picture of what I was seeing after she examined my eye.  She said they usually resolve themselves within a few weeks, but for me it took A WHOLE YEAR, after which it occurred in my other eye).


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.


#55 Billie Murawski

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Posted 22 January 2015 - 12:22 AM

Hey what happened, I was reading the posts about itchy dangling parts and what to do about it and Pat comes in and says she had floaters on July 4 and rcase saw rolling flashes of white light and antilogical says we're all falling apart because we're old, I wanted to know what to do about itchy dangling parts, do I go to the eye doctor? :huh:      Billie



#56 klf2013

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Posted 22 January 2015 - 09:33 AM

LOL!!!!!!!!!!!!!!!!!!!!!!!!!!! Billie you are my cosmic twin! I was thinking the same thing! Poor Mr. Tee is just hanging out there with no asnwer for his itchy dangling parts! :lol:



#57 Trey

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Posted 22 January 2015 - 10:18 AM

Mr Tee,

 

Boxers instead of briefs provides increased air flow due to an improved angle of dangle.  Sometimes that can help. 

 

I thought Hannibellemo was talking about your issue with her "flashing floaters" thingy.....but maybe not.


Edited by Trey, 22 January 2015 - 10:19 AM.


#58 Billie Murawski

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Posted 22 January 2015 - 11:32 AM

Hey Mr Tee if you get some Monkey Butt Powder maybe that will help Pat with her "flashing floaters" issue sounds like the two may be related considering so many people responded to your post with rolling lights and headaches

                                                                                   Billie

 

LOL!!!!!!!!!!!!!!!!!!!!!!!!!!! Billie you are my cosmic twin! I was thinking the same thing! Poor Mr. Tee is just hanging out there with no asnwer for his itchy dangling parts! :lol:

klf, sounds like  some boxers will help his "angle of dangle". I don't know what I'd do if we didn't have Trey!



#59 Marnie

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Posted 22 January 2015 - 06:22 PM

Obviously I missed something.  I need to go back and find out what the dangling itchy parts were.



#60 hannibellemo

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Posted 22 January 2015 - 07:49 PM

Just ask Billie; she'll be thrilled to fill you in (and put her "Billie Spin" on it, too)!

 

Just so you know, though, my eyeballs may itch occasionally but they seldom dangle!


Pat

 

"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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