Fron left side morning headache: a new symptom or too soon to be a brain met - 1257035

lindy
Posts:24

Hi There,
Lindy here...

Muy Mum (dx Stage 3A Adeno in May 2009) will take her first crizotinib tablet tomorrow. about 6 weeks ago, after 23 months NED a single spot came up on her liver...Anyway, she said to me yesterday that for the last few weeks, every other day or so, she has been getting headaches on the front left side in the mornings when she wakes up...it seems to go away about 1-3 hrs after getting up...Does not feel it at all during the day.

Is it likely that a brian met is causing this? She thought maybe it might be something to do with her blood sugar levels (she is a diabetic, type 2) so she took her blood reading and it was really low at 4.1. Brain mets would be hard to determine from a PET would they not...?

Regards,
Linda

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Reply # - June 6, 2013, 04:43 AM

JimC
Posts: 2753

Hi Lindy,

As you know, headaches can certainly be a symptom of brain mets, but they can also have a million other causes. The fact that the headaches only come every other day or so wouldn't be typical (they'd be more likely to be persistent), as well as the presence of the low blood sugar levels, would seem to suggest a cause other than brain mets. Of course, it's something that should be reported to her oncologist, but it would also be good to try to get the blood sugar levels under control in order to either prevent the headaches or rule that out as a cause.

And you're right that a PET scan would not be a good way to spot brain mets; under normal conditions the brain takes up a lot of sugar from such a scan and lights up on the scan image. An MRI would be preferred, although a CT can be used as well...it just doesn't tend to be as sensitive and pick up small mets.

I hope a non-cancer cause can be found and the headaches treated successfully.

JimC
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Reply # - June 9, 2013, 11:39 PM

lindy
Posts: 24

Hi Everyone,
Thank you for your replies to my question. When Mum went to see her Oncologist on Friday to pick up her crizotinib, she forgot to mention it to him but later called back and discussed it with his nurse. She asked questions around how long, how frequent and whether they happen every day or some days and asked what other meds she is on and whether she takes them at the same time each day...

Basically, the nurse said keep a diary for a few days and take your Diabex (metformin) at exactly the same time every day (Mum was not doing this). If it gets bad, call me asap but otherwise, I'll see you on Tuesday for your echo (which they are doing as part of monitoring whilst on crizotinib) So thats whats she is doing and somehow, since taking her Diabex at the same time (morning and night) it has resulted in no headaches...

Crizotinib seems to be ok so far but it is very early days...

If she gets the headaches; it's on Polly (the nurse) list to discuss with the Oncologist. Whilst on Criz Mum needs to see Nurse every 2 weeks and Onc every 2 weeks alternating...

Thanks Again,
Lindy

(Have updated my signature but can't seem to get the picture changed...)

Reply # - June 10, 2013, 05:19 PM

Dr West
Posts: 4735

Just be aware that crizotinib doesn't really penetrate into the central nervous system across the blood brain barrier, which means that we often do see brain mets as the first or only site of new progression in patients with otherwise excellent control outside of the brain. Some experts are inclined to do surveillance brain scans every 6 months or so.

-Dr. West

Reply # - June 11, 2013, 04:00 AM

lindy
Posts: 24

Yes Dr West, that thought is always in the back of my mind (or perhaps front of mind as the expression goes...). Suspect Mum will have a brain MRI before they do any surgical resection (if there is any visible disease left after 3 months on crizotinib). The spot on the liver is so small that if it does respond to the drug, the hope (big hope) its that it is complete response....

Thanks,
Linda

Reply # - June 11, 2013, 11:18 AM

catdander
Posts:

It's good to hear your mom is alright.

I see you've got your pic changed but now your sig is gone. @#$*
It can be frustrating. It's a good idea to copy and paste the sig on a document because it tends to evaporate when you make changes to other parts of your profile. Though I just changed my pic and it didn't erase my sig...this time because I was ready for it.

BTW your new pic matches your name, Lindy; so playful. Who are they?

Let me know if you need help getting your sig back,
Janine

Reply # - June 11, 2013, 04:19 PM

lindy
Posts: 24

Hi!
Yes, great the headaches are gone...hopefully they stay gone...(if you know what I mean)...
The signature thing is annoying! (but not a big deal in the scheme of things) If I log into GRACE from a different computer and look at an older post, my current signature is still there...I did actually copy it and email it to myself in case this happended but now there is no field for me to paste it back!

My profile picture is me and my Mum! We dressed up as Minnie Mouse 2 weeks ago for my daughter's 3rd Birthday party!! ha ha!! It's a crazy picture...we are a little crazy! It was a Minnie Mouse themed party and we all dressed up for it...Mum on the left and me on the right...hard to tell who is the Mother and who is the daughter with the Minnie Mouse make-up on!

5/09 Mum 56 never smoker dx 3A NSCLC Adeno
6/09 4x carbo+taxol
10/09 RL bi-lobectomy
11/09 3 x Alimta
1/10 PORT
5/10 PET solitary nodule RT supraclavicular node SUV uptake 4.2 Confirmed via FNA treated with 10 x RT
8/10 PET NED
11/10 CT NED
2/11 PET +ve 7mm nodule in same spot SUV uptake 3.8 +ve for ROS1
5/11 PET no change SBRT vs surgery?
6/11 PET no other mets 9mm nodule resected
8/11 NED
11/11 NED
3/12 NED
9/12 NED
12/12 NED
4/13 single hepatic met SUV 6.9
6/13 crizotinib

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