Spot on Brain - 1268766

aunttootsie001
Posts:324

Hi all! I am a NSCLC with a ALK mutation. I have been on Xalkori for over 2 years I just had my annual CT. I asked for a CT of the Brain this time and I'm glad I did. A blur not a Mass showed up. She told me not to panic. She ordered a MRI today and they called to tell me it showed 2 spots. My Dr. Is out until Monday so other Dr. On call put me on Dexamethasone and Zantac. I believe both spots are 5 mi or less. Why the meds and what do you think is next? The rest of my CT for Lung and Stomach still Stable. Lorrie

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JimC
Posts: 2753

Hi Lorrie,

I'm sorry to hear about your scan findings, although it is good news that your lung and stomach are still stable. Dexamethasone is often prescribed to reduce or prevent swelling associated with brain metastases. That swelling can be a major cause of neurological symptoms. The prescription for Zantac may be unrelated to your cancer, but you would have to ask your own doctors the reason it was prescribed.

I would expect that your doctor will review the MRI with you and suggest a course of action. If he feels that these spots represent cancer (based on their appearance and a comparison with past MRIs (if any)), he may suggest focal radiation such as cyberknife to those spots.

We will keep you in our thoughts.

JimC
Forum moderator

cards7up
Posts: 636

So sorry to hear this. Did you mean Xanax? This would help with the sleeplessness caused by the steroids. And the anxiety. Wishing you the best. Take care, Judy

aunttootsie001
Posts: 324

No she gave me Zantac! Probably so my stomach doesn't get upset but I will ask tomorrow when she calls! I hope they call early so I don't have to worry all day! Xanex would probably be better because I have been having trouble sleeping! Even with a sleeping pill! Although last night was spring ahead with our clocks and all the worry about what is going on? Lorrie

aunttootsie001
Posts: 324

Okay I go to see Rad. dr. Tomorrow. MRI showed 2 spots. Not sure if he'll want to go with Cyberknife or whole brain. They are both small with no symptoms, it was just time so I asked for the CT Scan. Glad I did! Anyway interested as to what you would do in my situation? Also should I change Target Drugs even thou Lung and everything else still stable! Will I have to go off it while doing Rads? Thanks everyone?

catdander
Posts:

Hi Lorrie, I'm so so sorry you've got these brain mets but glad they're not causing symptoms. How interesting the things were glad about today. ;)

I'll make sure Dr. West or another faculty comments.
It seems to becoming more often 2 mets are being treated individually with cyberknife though it depends. On what it depends I'd be interested in finding out more myself.

If crizotinib is still working outside the brain and side effects are manageable oncologists are leaving people on the treatment after brain mets. Whether or not oncologists are leaving people on the criz during radiation treatment I don't think they are but I know it's not been studied.

Keeping you in my thoughts,
Janine

Dr West
Posts: 4735

The Zantac was recommended because the steroids (dexamethasone, also known as Decadron) increase the risk of an ulcer, and medicines to reduce stomach acid can reduce that risk.

For someone with 3 or fewer small and asymptomatic brain lesions, it would be far more common to recommend stereotactic radiosurgery (CyberKnife, GammaKnife) than whole brain radiation. Some oncologists might recommend switching from XALKORI to Zykadia (ceritinib), which has more activity in the brain, but it also has significantly more side effects for most people. Many, and I would say most, oncologists would treat a patient's brain metastases with radiation, keep the XALKORI going, and keep monitoring the brain for additional mets. But if more and more brain metastases emerge, switching to Zykadia to treat within the brain more effectively makes more and more sense.

Good luck.

-Dr. West

aunttootsie001
Posts: 324

Thanks for your encouragement. Hey here's an old Question I am still having issues with the whizining. Both Pumologist and I don't think it is from the Lockulated Bubble in the lining of my left lung. He tried me on Dulera puffer and it seemed to help at first. But every since it just drives me crazy trying to sleep. Any sugestions. Now that I'm on the Radiaion for the Mets. I'm already experiencing off balance. Rubber knees! Thank Goodness it is only 3 weeks of this and 3 down 12 more to go! Any suggestions as to how to make it easier? Fatuque is pretty rough too! Thanks Guys! Your all so helpful! Lorrie

catdander
Posts:

Hi Lorrie, I'm so sorry you're going through all this.

I don't know that you have the thin clear secretion that are present with bronchorrhea but the whizzing is one of the big problems people have especially trying to sleep. Dr. West consistently and as recently as last month describe it as notoriously difficult to treat without treating the cause. Unfortunately that isn't always possible. Certain Spring, Debra, Linnea and Craig all have written about it trying to find ways to deal with it. Here is a post that you may find has ideas you've not tried. But there are many other discussions as well. http://cancergrace.org/topic/any-updates-on-treatment-of-bronchorrhea

Hope you feel better soon,
Janine

aunttootsie001
Posts: 324

Well had treatment today and saw Dr. We took the amount of Steriods down to two since I have no swelling. I am hoping it will help me feel better! Feel rubber legs Fatigue and bloated. But my main issue is this Damn Wheezing! Someone please tell me how to get rid of it?

aunttootsie001
Posts: 324

Well today is my last Wholebrain Radiation! Yay! I 'be had my ups and downs and not excluding the loss of my Oldest Son July 17th 2014. This has been a pretty wicked Month! The Rubber legs started on the Second day! Anyway hopefully we can get back to normal' any suggestions? Lorrie

JimC
Posts: 2753

Hi Lorrie,

Congratulations on completing WBR! I hope you will start to rebound very soon. I don't have any specific suggestions other than trying to remain active while pacing yourself. It's not like working out, where there is a benefit to pushing yourself hard. Just take it slow and your energy will return.

JimC
Forum moderator

aunttootsie001
Posts: 324

Thanks Jim! This has been really a rough month! Was not expecting it at all! Thanks for the Support! Lorrie

aunttootsie001
Posts: 324

So my last WBR was Weds. When I was there on Tue. I told them my mouth was so sore I could hardly eat. I have trouble drinking, eating etc. everything hurts. So I'm still very weak. It is all Ron can do to get me in and out of the bathroom. Here's my Question would I be better off in the Hospital a couple Days? On an IV drip? All I know is I hurt from head to toe! Lorrie

JimC
Posts: 2753

Hi Lorrie,

I'm so sorry to hear that you are in such pain. If your cancer center/hospital has a pain/palliative care specialist and/or inpatient unit, I agree that a consultation with them would be in order. Managing pain is what they do best, so I would give them a try.

I hope that you can feel better very soon.

JimC
Forum moderator

aunttootsie001
Posts: 324

Well 9 days after Last Rads. And still in the Hospital. Going to try and get some stuff for this Trush! If I could get rid of it I would hopefully feel better! Thanks Jim! They are considering putting me in Rehab, hillside? Wish meLuck! Lorrie!

catdander
Posts:

Lorrie, I'm so sorry you're not home yet and have this nasty problem. It's not uncommon to have thrush when you have a suppressed immune system.

This is what Mayo says about thrush, "Adults with weakened immune systems. Most often your doctor will recommend antifungal medication. But Candida albicans (thrush) can become resistant to many antifungal medications, especially in people with late-stage HIV infection. So a drug called amphotericin B may be used, but only when other drugs aren't effective, as it can cause serious side effects." http://www.mayoclinic.org/diseases-conditions/oral-thrush/basics/treatm…

Keeping you in my thoughts.

Janine

marisa93
Posts: 215

Hi Lorrie.

I'm sorry to hear what a rough month you've had! I hope you are starting to feel better and they've come up with something to help w/ the thrush. I wish you the best of luck in rehab so you can get home soon!!!!

Take care,
Lisa