24 replies to this topic

[JohnFromChicago]

This must be the week of side affects for me. First random shooting bone pains and now this morning I noticed a few lightning like flashes in my vision about three over the course of four hours. One while walking to work the others sitting at my computer at work. They are not very intense I would describe them as subtle. After noticing them I thought back and realized I had a few last week too (maybe one or two over the week). I get these occasionally when lifting weights and I have told my eye doctor who was not concerned. Of course my mind wanders and I assume my WBC is high causing lack of oxygen (causing the flashes) but I know this is incredibly unlikely since my last PCR was .15%. Anyone else experience these occasionally? I know they come with age for some people although I am only 29 but I do have the vision of someone much older with a -7.00 contact prescription and I stare at a computer screen for 8-10 hours a day for my job. 

[kat73]

Make an appointment with the eye doctor for today or tomorrow, just for peace of mind.  I think the persistence of this symptom, along with the absence of any stimulus (i.e., lifting weights) deserves his attention.  He should thoroughly explain what he thinks it is, or isn't, and why.  He should tell you what he sees and knows.  Only then will you be able to relax.  There is something about having CML that seems to heighten our anxiety and vigilance - we're always assessing and on the lookout for side effects.  It must be because our treatment is still so new - nobody knows what all the side effects are, even now.  Not to mention the long-term possibilities!  I think it is very understandable that you are worried and you have every right to push for an answer. 

 

As a purely pragmatic, political note (from my experience with specialists of all kinds) try not to bring CML or TKI's into the picture.  The reason?  A) He won't know, and it irritates doctors to not know things, B - It probably isn't a side effect and the discussion will veer off and you only have 15 minutes, and C) Worst of all, he will class you as a crazy and won't take you seriously.  His area of expertise is eyes, and you want to know if there is anything wrong with your eyes.  Keep to that. 

 

Make the appointment, make some notes and write down all your questions and fears and worries, and then resolve not to think about it until it's time for the appointment.  And let us know how it goes, OK?

[rcase13]

I would have to agree with the above. I have had constant issues with my vision since starting Tasigna in Oct of 2014. I have been to the eye doctor many times since. I have noticed that often the doctor will say "that must be a side affect of the Tasigna". They would then leave it at that. But I have been persistent and have been able to get some of my issues resolved. It turns out it wasn't necessarily Tasigna's fault.

 

I think i could have gotten more done if i had never brought up the cancer in the first place. It makes it too easy for Doctor's to place blame on the cancer and drugs we take for it.

 

Good luck!

[beno]

I've noticed that my low light vision has gotten much worse over the past year.  My wife says it's because I'm getting older and the eye doctor said there wasn't anything wrong, but I can't see anything at dusk and I can't read unless practically every light in the house is on. It's to the point I worry about driving at night.

[JohnFromChicago]

Thanks for all the replies I could not get into my eye doctor Today (far drive and I had work all day) but she did not seemed too concerned she said If they increase in intensity or frequency to come in right away. I made an appointment for next Monday but will be vigilant of any changes in the meantime.

 

As for my other concern, thinking the light flashes and bone pain may be related to a high WBC (incredibly unlikely I know) I just couldn't help myself since my oncologist office is just a few blocks from my work office I was able to go in real quick and get labs done on my lunchbreak. Results all normal 6.4 WBC. I don't even want to know how much the labs costed me but oh well no price on a piece of mind right. 

[Pin]

I get these flashes sometimes, usually I'll get a few and then not any for a while - I've been on Gleevec for nearly 6 yrs - not sure what they are? It's a bit disconcerting, but I think I've just gotten used to it - if you find out what they are let us know!

[JohnFromChicago]

I get these flashes sometimes, usually I'll get a few and then not any for a while - I've been on Gleevec for nearly 6 yrs - not sure what they are? It's a bit disconcerting, but I think I've just gotten used to it - if you find out what they are let us know!

 

Staring at very bright white computer screens and walking long distances at a fast pace outside in sub-freezing temperatures (exercise) both seem to be possible causes based on my research haha. I was performing these activities at the times I had flashes today. I turned the brightness down on my screens from 100 to 55.

[gerry]

If the flashes are in your peripheral vision worse in low light, mornings, evenings it can be a sign of a retinal tear. The earlier you get it checked the easier it is to fix. If the retinal tear isn't treated it can lead to blindness. Always best to get it checked.

[Trey]

Many side effect issues are like weather reports.  Storms early on, then gradual clearing later.  But if you see a tornado take cover.

Edited by Trey, 06 April 2017 - 05:32 PM.

[tiredblood]

Might check with an ophthalmologist verses an optometrist. My vision has seemed more dim over the past couple of years.

[thatguy]

Thanks for all the replies I could not get into my eye doctor Today (far drive and I had work all day) but she did not seemed too concerned she said If they increase in intensity or frequency to come in right away. I made an appointment for next Monday but will be vigilant of any changes in the meantime.

As for my other concern, thinking the light flashes and bone pain may be related to a high WBC (incredibly unlikely I know) I just couldn't help myself since my oncologist office is just a few blocks from my work office I was able to go in real quick and get labs done on my lunchbreak. Results all normal 6.4 WBC. I don't even want to know how much the labs costed me but oh well no price on a piece of mind right.

I think you and I would get along great. Lol.

I feel like Tasigna toasted my vision. Might have just been blood pressure, but my night vision went to crap (and stayed there) I have to squint to see things clearly now, and I had even had temporary visual black outs when bending over to tee up a golf ball while on the drug. Minimal activity seemed especially strenuous for some reason.

I think our fears and paranoia sometimes dwarf the burden of the disease.

[hannibellemo]

I agree, next time I would see an ophthalmologist. If it weren't for your age, you are too young, it could be incomplete PVD (posterior vitreous detachment). The flashes are caused by the sac, that has not completely detached, tugging on your retina.

 

Generally it happens gradually as you age but it can happen precipitously as it did with me. I am, however, many years older than you.

 

Good luck and I hope it is nothing.

[gerry]

John - I reread your your first comments, being short sighted to the level you are adds to the risk of possible retinal detachment. It is to do with the overall shape of our eyes when we are short sighted. It could just be a side effect hopefully, but your vision is important so you'll need to see an opthalmologist just to be sure.

[jjg]

I had something similar in the first year on tasigna. Got it checked out - nothing - it went away gradually. Hopefully a similar result for you.

[soundoff]

Tasigna eye yes I also had this during my first few years. My onc labeled it "Visual Disturbances". They have since gone away somewhat.

Soundoff

[pammartin]

_{I have flashes that look like lightening a few times a week. After testing, my diagnosis was painless migraines.  I would not rule out the serious conditions and have it checked out.}

 

_{Best of luck}

 

_Pam

[Bad Blood]

I started on Tasigna in August of 2016 and had the same thing happen. I told my oncologist that I had weird, white flashes in my peripheral vision and he suggested that I see an ophthalmologist. The ophthalmologist did every test he could and found absolutely nothing. Also said it must be a side effect from Tasigna. I have to say that it has gotten better. I don't see the flashes as much anymore. 

[tiredblood]

I had light flashes last week, but attributed it to cold medicine and feeling weird because of the cold. I told my coworker that I felt like I was having visual disturbances. I just now had it happen again and remembered there was a recent post about this. Guess it's just another strange side effect, but TKI is keeping me alive.

[steelpony5555]

And here I thought I was nuts....get the flashes of light out of the corner  of my eye now and then....

[JohnFromChicago]

I had mine checked too. Nothing wrong with my eyes. I haven't had any flashes in the last few weeks so I guess its just one of those side affects that comes and goes.