Side Effect from Crizotinib? Infection and blood clot in left side neck - 1258053

lindy
Posts:24

Hi Everyone,
My Mum sent the night in intensive care last night. She has been on Crizotinib for about 9 weeks. One of the side effects is that you can get ulcers. It would seem she got ulcers and then developed an infection. Her neck lymph nodes got large. Went to Dr, and he said, that is the body's fighting response.

It was like that for about 2 weeks then it got very painful and stiff over last day then overnight, when she woke the next day, her neck on the left was very swollen and couldnt move. She sent a text to her Onc who said to go to ER and to tell them when she got there that he is her Onc. That they will call him. She went to ER with a temperature of 38.5. She was started on penecilan and flagyl antibiotics via IV (had to stop Criz as it interferes with many drugs) and got a CT scan (though not really expecting anything out of ordinary). CT scan showed large clot in jug vein on left side neck and up side of the head so was then started on claxene thinners.

They got a microbiologist specialist to get swabs to try and grow cultures and nothing has showed up...but they are concerned that it could or has spread to the base of skull...her white blood cell count is 100 which seems very high...It is all a bit strange and no one else on the Criz trial in Australia has had any reaction like this...They are all a little unsure also because when you look at my Mum, she looks great...laughing crakcing jokes and wearing pink lipstick...

At this stage, they are unsure which came first, clot or infection and whilst unlikely, they havent ruled out a tumor (though 3 months ago at her scan, after 23 months of NED, there was a solitary spot on the liver)...Has anyone heard of anything like this? Anyone on criz that got really bad ulcers that developed into infection? Clinically it sounds serious but when you see her, she looks OK...

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Reply # - July 19, 2013, 07:45 AM

catdander
Posts:

Hi Lindy, I'm so sorry your mum has these rotten symptoms. I hope this is just a bump in the road. I can't speak to these infections and blood clots but will ask a doctor to comment.

So glad she is feeling alright and upbeat. It appears you're both lucky to have each other.
Janine

Reply # - July 19, 2013, 08:26 AM

mpinder
Posts: 42

Lindy,

I am very sorry to hear that your Mom is experiencing these problems. I have treated a number of patients with crizotinib and I have not seen side effects like this nor have I read about anything like this in the crizotinib studies. I have also not seen a high white blood cell count from crizotinib. It is however very common to have a high white blood cell count in conjunction with a serious infection.

I hope that her doctors are able to get to the bottom of the problem. All the best to you and your Mom.

Dr. Pinder

Reply # - July 20, 2013, 07:17 AM

lindy
Posts: 24

Hi,
Thank you for the replies.
Yes, it seems like a rare side effect perhaps...
I was wondering if Lemierre's Syndrome was a good description of what has happened and it appears this is the dx the Docs at the hospital are thinking too...

So at least they have a better guess if the bacteria behind all this and are using a combo of metrodinizole, clindamycin and tazocin...

Now that shes on thinners would that mean resuming crizotinib is out of the question? Does that also rule out the surgery they were proposing fir the solitary liver met? What accept back, poor mum only just recovered from the accidental piercing of her pericardium during her liver biopsy!

Dont suppose anyone else has had a throat infection which then invaded their jugular vein which then resulted in a clot?? Would love to hear from you!

Scared,
Lindy

Reply # - July 21, 2013, 11:46 PM

lindy
Posts: 24

Thanks so much Janine...
It helps to know there are others who really do understand the fear and frustrations which come hand in hand with lung cancer and all of it's associated complcations...
My Mum had bone scans today (part 1) then the next part is in 2 days. They want to check she doesnt have hematogeounous osteomyelitis (bone infection) and I guess they are also looking to see if there are any bone mets...

Here we go...I'm strapped in...

Reply # - March 14, 2014, 06:04 PM

lindy
Posts: 24

An update:
We've recovered from the Lemierre's and endured a few more clean scans...things are looking good just now.
On Friday, another NED scan so despite this rogue spot that had appeared on the liver, (metachronous oligometastatic perhaps), it is now, since Criz, nowehere to be seen.

3rd baby is also on the way..

L x

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