5 days ago my mother (stage 4 adno on Tarceva about 8 weeks EFGR+) started to lose her peripheral vision (Tuesday). By Thursday she was confused and vision was getting worse so my parents went to the ER.
At the ER a CT scan indicated no brain metastasis. She was admitted. The next day she had a MRI.
The MRI confirmed no brain mets but there is damage. When we met with the neurologist, she said she thought that my mother had a large number of small strokes, mainly in the ocipital lobe.
Today, the oncologist assigned to her case came into our room and said he did not agree about the strokes as he was not seeing blockages in the blood vessels - he instead thought that it was due reversible posterior leukoencephalopathy syndrome caused by the Tarceva. He suggested we stop the Tarceva for a week to see if she gets better.
Complicating things is my mom's main oncologist is a few hours away in the Detroit area (she lives in a middle of Michigan). We have called her but she is not actually here seeing my mom. She does not agree with the local oncologist but admits she does not know for sure.
The vision has not gotten better (today is Saturday) and she can remember things from long ago but can't tell us what month is or the name of the hospital she is at.
So I would really appreciate knowing if Tarceva can cause RPLS? And if it is ok to take a break from Tarceva for a week without progression?
Thank you all once again for your valued input and time. We are very scared and uncertain right now.
Reply # - June 4, 2016, 10:53 AM
I should add that the
I should add that the Saturday before this all started she was switched from Lovenox to Xarelto.
Reply # - June 4, 2016, 01:52 PM
I'm so sorry, I can imagine
I'm so sorry, I can imagine how confusing this must be. It doesn't seem very likely tarceva alone would be the cause of rpls. RPLS has been rarely associated with gemzar and gemzar with tarceva but not tarceva alone however with a drug like this anything is possible. It wouldn't hurt to stop treatment for a few days to see if symptoms stop without much worry that survival would be decreased by doing so.
It may be possible to transfer her to Detroit if you feel she is able and her care is insufficient.
Janine
Reply # - June 4, 2016, 02:13 PM
Thanks Janine. I'm ok with
Thanks Janine. I'm ok with stopping the tarceva for a few days as all doctors involved agree that a few days off won't hurt her, but I am worried that she may improve for some other reason, we think it's because of the tarceva and then she loses this treatment option. Especially given what the Detroit doctor said. If you google this you find nothing. Even the oncologist here admitted he hasn't seen it in tarceva but "drugs like tarceva".
We are considering transferring her.
Reply # - June 4, 2016, 03:30 PM
Has she suffered from high
Has she suffered from high blood pressure? Hope all works out for her.
Take care, Judy
Reply # - June 5, 2016, 08:10 AM
Hi Holly,
Hi Holly,
I understand your concern about stopping Tarceva and the possibility of wrongly associating it with the symptoms. Since it's unlikely that Tarceva is causing RPLS, I think stopping it for a few days is also unlikely to suddenly improve the symptoms, and that another cause will need to be investigated, allowing the possibility of resuming Tarceva . If holding Tarceva does result in improved symptoms, then you'd still want to have a conversation with her regular oncologist about resuming Tarceva, perhaps at a reduced dosage.
JimC
Forum moderator
Reply # - June 5, 2016, 09:26 AM
Thanks Jim for your reply.
Thanks Jim for your reply.
We are transferring my mother to a bigger hospital today - hopefully the University of Michigan hospital - as the doctors cannot agree and confirm a game plan going forward. We have stopped the Tarceva for at least today and until we can get her somewhere with the expertise to figure this out. I will update once we have a definite answer in case that were ever to help anyone in the future searching these boards.
Reply # - June 9, 2016, 12:18 PM
Hi everyone -
Hi everyone -
I just wanted to update. Unfortunately the hospital in Detroit has confirmed that my mother did have numerous strokes. Of course this is devastating news and even worse she has not improved much this last week. We were really hoping that the time left with her would be quality time and now we are robbed of that. It has been horrific.
Thanks all for your help.
Holly
Reply # - June 9, 2016, 02:11 PM
Holly, so sorry to hear this
Holly, so sorry to hear this news. May you all have some time to be with her and I'll be praying for you all.
Take care, Judy