12 replies to this topic

[quiltdiva]

      I was diagnosed Ph+ CML in Nov (for my birthday) and began Tasigna 200 mg Dec 23 (my Christmas present). Numbers are already down in the normal ranges. Onc said this was caught very early, thank goodness.

     I have just had some of the minor side effects, scalp rash, constipation, excessive face flushing sometimes; those I can manage. But the one that really bothers me is my vision; eyes that are always bloodshot and itchy. Plus, my vision is not always clear. I know it's from the Tasigna, as I had to miss 3 days of meds due to problems with script refill. By the 3rd day, my eyes were better. Anyone else have this, and what did you do about it? It doesn't seem to be listed in the side effects papers with the drug. Onc said to see my eye dr if it continues; maybe I need stronger lenses. Hmmm, not sure.

     I am so glad to have found this forum and folks who understand! Thanks all.

[jwbwater]

I've had the dry, itchy eyes on Tasigna, but it's not so bad for me, I just try to stay really well hydrated and squirt saline in my eyes if it starts to bug me too much.  I live in the desert so I used saline even before I was diagnosed. 

Not sure what you mean by you vision is not always clear, can you be more specific?

I've had spells (lasting from say 2 to 10 minutes) of what I've called blurred vision, but might also be described as hypersensitivity to light (like I looked at a bright light, but I didn't).  But these have been infrequent so I'm not quite ready to blame Gleevec and now Tasigna.

[quiltdiva]

Thanks for the response.

     The blurry vision is on and off. If I blink about 10 times, it clears for a while. But it's like my eyes are swollen or running a fever.  Like when you've been up 20 hours and you can hardly focus. I do use eye drops every morning, but just for the moisture. I think I drink enough, but will try more. Good point.

     I may just see my eye dr sooner this year than the regular visit.

[cpsn0000]

Quiltdiva,

What is your dosage you are taking? Is it 200mg 2x per day or what is the dose you are on?

[quiltdiva]

I take 2 - 200 mg capsules twice a day. I'm finding 9:30 am and 9:30pm is working for me, since we go to bed early.

And, what's with the packaging of the capsules? My goodness, a good share of the cost must be the package!

Thanks.

[cpsn0000]

Quiltdiva,

That is good to hear about taking 200mg 2x per day. Did you doctor say that should be an effective dose for you to stay on? The reason I am asking, is that I am doing well on 150 mg 2x per day but the recommended dose was 300mg 2x per day and it caused me to get a grade 4 rash and really low platelet count which is common. Per tasigna, this not uncommon and does resolve overtime and with usally using a little bit of a lower dose.

I meet with my doctor and will discuss getting 200mg capsules since I have a free 3 month supply of the 150mg capsules given to me. All my other counts were fine on the 300mg 2x per day so I am excited to see if I can role on 400mg total for the day since I have no side effects on the lower dose and I am sure 100mg more wont change things from a side effect point but attack the leukemia even more.

Can you give me your feedback on this?

Thanks,

Sal

[quiltdiva]

I am no expert on all this, at least not yet. (Still learning the lingo here!)

Onc put me on the dosage from day one. No discussion on any other dosage. He had others on this dosage (I am his first woman patient on this dosage), and they were responding great, so that's what he prescribed. I asked about duration, and he said I get to take this the rest of my life, unless things change. I wonder, does a person's weight have anything to do with the amount a person takes? I'm about 40 pounds overweight (of course I never had that weight loss symptom, or any other symptoms, before diagnosis!).

I haven't had the tiredness everyone else talks about, thank goodness, because I still work full-time. No nausea or other icky problems. Only problems really are the rash on my scalp, hair folicles in lots of places (my belly) are raised and pink, and this eye dryness and blurry vision sometimes. Oh,and the hair under my arms stopped growing. Yea, a good side effect!

All my numbers are great already, in the normal zones, including platelets, so is that the chemical remission? Onc said we will test in June for molecular remission. For me, I think the dosage must have been perfect.

I do appreciate this forum. No one in my circle has a clue what it is all about.

quiltdiva

[cpsn0000]

That is great to hear. He contimplated putting me on a lower dose but wasn't sure. He is one of the doctors who wrote the NCCN Treatment Guidelines. I will certainly let him know other people have had success on 200mg 2x per day and since it is like 300x more potent than Gleevec, it should allow a lower does to be effective with some people I would imagine and keep toxicity problems to a minimal so you can stay on the medication.

Thanks for the feedback and this is a great site...

[cpsn0000]

Yeah, I feel pretty good on most days..I feel fortunate in that regard. Again, if I can role on 200mg 2x per day, and I will push for it tomorrow and my platletes hold, I will be so freakin excited, you have no idea. I know we cant put the horse in front of the car but being positive is always the best medicine to have available in your medicine cabinet....

[quiltdiva]

I keep forgetting to ask - can you have some alcohol, specifically wine, while taking Tasigna? As long as it's not in the 3 hour, what I call "fasting" period?

[jwbwater]

Hi Billie,

Thanks relaying the possibility.  I'll mention it to my doctor's and see what they say.  I wouldn't liken these episodes to a window shade being pulled over one eye and they do seem to affect both eyes although not necessarily equally.  I haven't had one for several weeks, but I'll keep this in mind if I have another.

Jim