ANYONE HAVE EYE OR VISION problems while on KADCYLA?

jnh

Ladies,

Has anyone had EYE and or VISION problems while on Kadcyla?!? Overall my treatment is going very well! Side effects getting easier to manage and have good energy. Also, it is working as confirmed with scan results!! That is the best news of all! But, I started having extremely dry eye and poor vision. I wear glasses already. I have been to the optometrist and opthalmologist 5 times since Dec. and each time they check my eyes the prescription needed is different! Once, it was drastically different, the other times not as drastic differences….but enough to affect reading, driving, etc. It is not realistic to get 5 different pairs of glasses, obviously! Some days, my eyes are so dry, it feels like there is sand in them….when there is nothing. I am already using lubricating drops, warm compresses at night, systane gel at night and have just started a steroid drop 2x/day. Considering Restasis, which my onc says is ok with Kadcyla. Eye doctor suggested doing Autologous Serum Drops, which most insurance does not cover.

Just curious if anyone else has had these symptoms…any ideas on treating it?

Thanks,

Julie

RonnieKay

After about 6 months on navelbine/herceptin/perjeta, I noticed my eyes being dry & started using systane to lubricate. It got worse, to the point of being irritated with makeup (which I stopped wearing altogether). I tried allergy drops, thinking it was seasonal allergies.  I had the sand feeling & sometimes my eyelids literally wouldn't open at the same time..ugh.  They were blurry often, but my vision didn't seem worse (I had very mild near-sightedness & wore glasses when driving).  After about a year on this regimen, my vision got worse & at my yearly vision check, they'd tanked about 3 degrees.  New glasses were great, for a couple months.  My dr checked again & my R eye was worse, so they made a new lens w/no charge. Two months later, they'd both gotten worse so I got new lenses, free again.  Each time my onc & eye dr said not due to meds....just age.  At the next appt 6 months later...off chemo, just on h/p, worse again, new glasses and eye dr admitting he thinks drugs are probably to blame...duh!!!!   Since dropping perjeta 7 months ago, my eyes are so much better.  They aren't dry anymore, I can wear eye makeup (cleanse w/coconut oil) and my vision is pretty stable (although cataracts are in my future-almost 62).  So...I think many of these drugs cause dry eyes, especially when we're on them for extended periods of time (most gladly, most of the time!).  I wish I could tell you something else would help...but you're doing everything I did.  I did prednisone drops for a while when they were so irritated, but even though the opthomologist said they looked more clear, they were still fuzzy & the drops freaked me out.  So sorry :-(

jnh

thank you for your reply! I, too, am glad to be here having these problems! Don't be sorry, it helps simply to hear someone else has had them, too!! I also think it is the chemos and meds I've been on! Thank you, and good luck to you!!

Julie

newbie20111

Hi Eyes,

I started a loading dose of Kadcyla on Friday.( Dec. 2016) ..( Veteran of all sorts of BC chemo,surgery,rads). Have a single possible lung met. CT scan in February to check status.

Mostly a weird headache ( I don't get headaches) even after 5 years on and off of treatment and three reoccurrances. ( Mostly skin and axilla mets) ...

Seemed like my headache is postural, maybe my eyeballs..seemed to have more fluid and harder eyeballs initially..did chair yoga class with tears ( not crying, just release tears, normal in this class) ....I think there is additional pressure on head and eyes the weak point..I did initially have some visio blurring trying to read the tv info blurbs....better now.

Headache comes and goes, mostly postural, ex. using my IPAD2.

I use a homeopathic med called Boiron Coldcalm ( under the tongue) for seasonal allergies. Seems to work for this headache which is mild but variable....My sinuses seem to be clogged some as well, which is not usually an issue on P/ H which seems to help my allergies. Also my two kinds of tinnitus louder on Kadcyla.

Other than being crabby for having a third round of chemo, side effects for a taxane product very mild compared to regular Taxane which was hell in 2012. My eyeballs hurt just thinking of that one.

Had no real issues with Perjeta/Herceptin but did progress with one lung met ( possibly) after a two cycle vacation from Perjeta to get rid of belly bloat.

Kadcyla doesn't seem to bloat at this point. During treatment, I do have Benedryl IV which helps congestion due to Kadcyla, and previously Perjeta/Herceptin.

Hope this helps...I don't think eye drops will really relieve the pressure. Try some mild yoga or find a good acupuncturist to move some of the fluid from head to other body parts. Get moving and do mild exercise to move lymph fluid from brain to other areas of the body. Do facial craial massage, and tapping...

Not so Newbie20111

h

newbie20111

newbie20111 writes:

Had second dose of Kadcyla, no headache.

Had a nice dinner after, then stayed horizontal with a nap.

Next day two naps. So far no headache. Stayed away from my IPAD, heavy lifting, etc.

Eye issues may be a symptom of fewer or less dense eyelashes.....due to the taxane.

Happy Holidays Everyone.

CT scan in Feb will allow a peak at lung nodule.

MaggieCat

Eye issues - I was on kadcyla for 12 months ( ATEMPT clinical trial). My eye sight changed throughout that time. I had dry eye issues with tearing which seems to be common. My eye sight seems to have settled in the last 6 months ( 7 months after treatment ended)...

MarshaMay

I e been on Kadcyla since August. I just started Restasis and also use OTC drops day and night. I'm just not making the necessary amount of tears. It's actually painful and highly annoying since with a leg crippled by a brain tumor and the normal fatigue, reading is one my chief pleasures and activities. I'm eager for the three months to pass and the Restasis to kick in.

newbie20111

Newbie20111 update: Kadcyla: Blurry Vision and neuropathy and poison ivy!

Am turning 67 this summer. Re: vision issues: Saw same optometrist two months apart and had vision decline in one eye more than the other. After that, saw Johns Hopkins ophthalmologist. Both said I have a correctable with glasses vision issue from a more rapidly growing cataract....(cancer rt. treatment side) . . Vision seems to be stabilized or I am just getting used to the changes and holding off on new trifocal glasses due to their expense. Have had trifocals for several years.

In March I got a viral flu like respiratory infection which cleared up quickly, then got a crushing fatigue for four days, took a lot longer to feel better and decrease my fatigue which has never been an issue before. Skipped Kadcyla number 5 to recover. ( Had significant neuropathy both hands and feet from botched CT scan combined with infusion and still being debilitated from the flu type infection.). All that has resolved including the neuropathy and most of the blurry vision, and currently some mild tinnitus. Saw my acupuncturist which helped a lot. Do chair yoga on a regular basis. Even my poor therapy dog got at huge tooth abscess and had to have surgery. He is better too.

In April, got a terrible case of poison ivy on both forearms arms. Regular arm resolved quickly, lymphedema arm rash continued unabated for three weeks. Used a great poison ivy soap recommened by a local compounding pharmacy...and a silver solution eventually on the lymphedema arm. That has resolved as well

Had another CT today ( without contrast) to check for the resolution of thelung met and possible axila nodal involvement. Will have another set of labs/doc/kadcyla this week. Feel very good. Even took a short plane trip to visit ancient relatives.