has anyone else developed blepharospasm while on Tarceva?
I was diagnosed stage IV adenocarcinoma of the lung in June 2011 (I noticed an abdominal mass, no primary tumor identified, EGFR positive, exon 19 deletion, Asian female aged 55 at diagnosis, never smoker).
I had a good response to 4 courses of cisplatin and Alimta, and started on Tarceva 150 mg September 2011, dose reduced to 100 mg in October 2011 due to mouth ulcers. PET scans essentially negative from January 2012. Spontaneous left pneumothorax and malignant left pleural effusion April 2012, treated with talc pleurodesis.
In March 2012, I noticed difficulty in keeping my eyes open, and was diagnosed with blepharospasm. Just wondering if this has happened to anyone else.
On a separate note, has anyone else developed worsening or different side effects which appear one year after taking the same dose of Tarceva? I recently developed a lot of abdominal discomfort and gassiness. recent CT and PET-CT scans were negative for tumor. Therefore the symptoms were attributed to a side effect of Tarceva. My other side effects which have worsened recently include mouth ulcers and itching skin.
Thanks for your help.
Reply # - December 7, 2012, 09:21 AM
Reply To: Blepharospasm while taking Tarceva
I'm so sorry to hear this, Kim5. I don't remember anyone here on GRACE reporting such a side-effect. As if having lung cancer wasn't enough to deal with!
As to your second point - actually yes, I've found that different side effects started developing about a year in - mainly the nail problems/paronychia that others have also reported. Bad staph infections in my toes, plus eye infections. The latter have been unpleasant but nothing like what you are having to cope with. What are your doctors suggesting? Given that you're doing so well, would there be any mileage in reducing the dose a bit more? Very best, and I hope you find a solution.
Reply # - December 7, 2012, 10:54 AM
Reply To: Blepharospasm while taking Tarceva
Hi Kim, I'll keep this short, my connection is dropping in aand out today. I want to share this link with you and please note that the links at the of the blog, they are also very helpful.
http://cancergrace.org/cancer-treatments/2012/07/23/book-rec-dr-lacoutu…
Too, I'll contact a doctor to see if they are aware of the eye issues. I look forward to hearing what your doctor is suggesting.
Janine
forum moderator
Reply # - December 7, 2012, 12:28 PM
Reply To: Blepharospasm while taking Tarceva
I'm sorry to say that I don't have any information here, nor does the book by Dr. Lacouture include any mention/discussion of this. I've not heard of this side effect from Tarceva (erlotinib), even if it's believable (as is any side effect related to skin/hair/nails/eyes on an EGFR inhibitor), so one question I'd ask is whether it's definitively related? Have you taken a break from Tarceva and seen this symptom resolve? And to answer your other question, I really haven't seen a new symptom resolve after a prolonged period of Tarceva. You can definitely see a waxing and waning of rash, diarrhea, nail changes, etc., but rarely a new symptom occur out of the blue after a year with a stable set of side effects.
Good luck.
-Dr. West
Reply # - December 8, 2012, 08:26 AM
Reply To: Blepharospasm while taking Tarceva
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Reply # - December 8, 2012, 12:13 PM
Reply To: Blepharospasm while taking Tarceva
I'm sorry dystoniadisease but we don't allow advertising on our forum. If you would like to link us to the research done we'd be happy to post it.
Thanks,
Janine
forum moderator
Reply # - December 10, 2012, 09:33 AM
Reply To: Blepharospasm while taking Tarceva
Thank you all for your prompt responses, and helpful comments. This forum provides an invaluable resource and support system.
My oncologist is thinking of reducing the dose of Tarceva to 75 mg daily.
Dr. West: it is a good idea to think of stopping the Tarceva temporarily and seeing if the blepharospasm changes. However it is complicated, as the blepharospasm seems to vary from day to day.
I am resigning myself to the fact that the blepharospasm is unrelated to my disease and treatment, and simply bad luck.
The abdominal symptoms wax and wane, but were worrying when they appeared recently, as these were Similar to my symptoms at the time of diagnosis.
Thanks again.