Brain mets acting up

StephN · 01-20-2006, 12:19 PM

Well folks, the fight continues. Seems to be the season for concerns with our collective brains!

My brain MRI of last week did turn up some activity. However it is in the same place as the 3cm (1 inch diameter) met that was Gamma Knifed exactly one year ago.
So, the big question is whether the (what could be) regrowth of that tumor which had shrunk down to about 1/3 the original size and has come back up about 1/2 cm is the bedeviling necrosis (or tumor death) OR is actually new tumor activity.
There is also a new spot of 3mm (very tiny) right next to the margin of the original tumor that was not seen in the Sept. MRI.
The brain tumor review board discussed my case on Wed and my rad onc called late yesterday to discuss with me. Naturally the neurosurgeon says lets just go in and take it out and then we will know for sure. The Gamma guys say if it shows positive on another test and we can get the approval we can Gamma Knife it again plus get the new spot.
Then there was the "let's watch it a month and see" opinion. NOT for me.

So, after mulling all this over, I have decided to go with the Brain PET scan recommendation. Because the area is large enough to show activity of tumor nature, although not conclusive. As some here have mentioned in the past, a brain PET may not be of value as it is not as sensitive as in the rest of the body as the brain generally shows more glucose uptake anyway. However, they feel if I do have tumor activity it would show unless it is very slow moving. The 3mm spot most likely will not show well on the PET as too small unless it grows in the meantime. This spot is just outside the high dose area of my procedure last year.

So, I may follow in Barabara's recent footsteps and have to have them go in and excise this mass to have a definitive answer. But, I plan to give them another look first.

Two good things. First, they are not asking me to take any Decadron now (YAY!), as I have no symptoms and there is only a little local inflammation (if that is what the enlargement is) and nothing outside that. Second, the area is in my cerebellum (lower brain) behind my left ear and not a difficult place to operate.

What the neuro onc said about necrosis is that typically it will appear in the time period of 6 up to 18 months after a procedure. I am smack in the middle of that window. One other good thing is that I have been having my CEA tumor marker followed (as well as CA27-29) and this marker was sensitive to the brain tumors last year. My number has been steady at .9 for months (higher than 5 is abnormal) after being as high as 15.4 the week after my Gamma Knife last January.

So, it is hard to know exactly what is going on with the low tumor marker and other factors. As for the idea of taking one of the new small molecule drugs, all my docs say that since I am NED from ears down it is considered a problem of local control and advise to stay with "local therapy."

After all I went through over this last year, I was prepared for this news, although it still freaks out everyone else who hears it so I am not spreading it very far.

One last thing. I am scheduled for the Bayer HER2 Serum Test when I have my Herceptin and blood draw on Tuesday. This may give us one more way to tell about the brain activity.

Thanks to all who have had this "necrosis" problem in the past and posted about it as it has given me the information I need to keep up my courage!

RhondaH · 01-20-2006, 12:28 PM

we will DEFINATELY be adding your name to the 3pm prayer on Sun. Take care and God bless.

Rhonda

mickey · 01-20-2006, 12:30 PM

Sorry, Steph. I do know what this feels like. Did you have symptoms before that warrented the decadron? I did not have it originally but now wish I had. Getting rid of the edima originally would have made things easier. Darn these mets, darn this cancer. If I can offer anything, let me know. I am beginning to know a whole lot more than I care to.
Mickey

StephN · 01-20-2006, 12:47 PM

Thanks for your sympathy.
I was still online answering another post.

Yes, I had to take Decadron last year as I had rather a large area of diffuse inflammation (looked like cotton that has been stretched out and you can see through it) that they wanted to reduce. I know it is hard to recall what everyone has to take, but I had rather severe side effects from that drug even though I only took it for about 5-6 weeks including the taper-off period.
I have some lymphedema in my hands as a result of taking that drug (my theory as I have it in both and never had it prior to that time).

I had no symptoms, such as balance or other, just that imflammation that needed controlling.

Julie2 · 01-20-2006, 12:50 PM

I am wishing you all the best and am sure you will come out of this problem with a renewed spirit.

Julie

Esther · 01-20-2006, 01:19 PM

Steph, it sounds like you are taking charge of the situation. I hope they find nothing more than tumor die off.

jojo · 01-20-2006, 03:33 PM

Steph, sorry to hear that you have new activity, but with your brave spirit, you WILL overcome this!!!

jojo · 01-20-2006, 03:43 PM

Oh, one more thing... Last year, I had asked how they came to decide a craniotomy on my 2nd tumor (grew back in the same spot; pre-gamma knifed). I did NOT have a brain PET scan. They just studied & compared the growth size of the 2nd tumor & time frame between my brain MRI's. Too bad, in my craniotomy, it turned out to be cancerous, after all. Hence, these 24 radiation seeds..... :-( Good sign, though, is that the next follow-up MRI's have continued to show no new activity for almost one year now.

01-20-2006, 05:43 PM

Well........phooey. To be polite.

thinking of you, sending hugs,
pattyz xoxoxox

karenann · 01-20-2006, 06:36 PM

Steph,

I am thinking of you and sending lots of love and hugs. I know you are going to make it through this. Your spirit is strong!

Love,
Karen

Barbara H. · 01-20-2006, 07:00 PM

Hi Steph,
Sorry to hear of your ordeal. I just returned from the Brain Tumor Clinic. I had my post-op MRI yesterday. It turns out that I still have inflamation (post operative changes) that they had hoped would have been resolved by now. In some people it continues longer, but I need to have another MRI in two months to check how I am healing. I had a long talk with the radiologist about necrosis. There is still a lot about it that the experts don't understand. What you read on the internet is scary, and from what I understood is inaccurate and/or doesn't apply in my case. Usually necrosis grows to a certain point and then the body takes care of it. The problem for us is that they want to make sure that there are no tumor cells involved, and the only way to really know for sure is to go in and get it. Dr. Peter Black took mine out with MRI support. I was actually in a MRI machine during the entire surgery. I had surgery late Friday and was home by noon on Sunday. I only missed 6 days of school. The following Monday a week later I returned to my third grade classroom. I didn't receive Decradon until the surgery and was weened off of it in a week. I actually found this surgery to be much easier than the sterotactic surgery I received in June 04. I really had balance problems then, and had no balance problems this time. Maybe it was because I only needed to be on the decradon for a week. I do not want to post my tel. phone number over the internet, but if there is a way Joe can get your number safely to me, and you want me to call you, I would be happy to speak to you about it. I am also willing to send my number if there is a secure way to do it.
Another note! My oncologist, Dr. Parker said that he met two women from the HER2 support booth in San Antonio. He couldn't remember whom. I imagine it was you or Christine, or perhaps Linda. Wish I could have been there with you.
Best wishes, and I hope you will find your procedure as easy as I did. ( although none of this is easy)
Barbara H.

Lolly · 01-20-2006, 09:32 PM

Steph, I really hate it that you have to climb on this merry-go-round again. But, you are as usual on top of the situation and sounds like your docs are too, 'cause if they weren't you would have "fired" them by now! I will be in the prayer chain on Sunday and of course you will be having lots of good energy sent your way along with our other dear ones who are struggling right now. "See" you there.

<3 Lolly

StephN · 01-20-2006, 11:04 PM

your doctor Parker met myself and Ginger Empy at a poster discussion with a woman who had done a report of a long survery of patients either getting or not getting brain mets. This was just a small group talking to the author of the study from Texas. He seemed like a great guy!

Thank you ALL - I really appreciate all the "warm fuzzies" and good wishes/prayers.

michele u · 01-21-2006, 12:01 AM

Steph,

I am thinking of you!! I will say a prayer for you tonight

sherri · 01-21-2006, 12:09 AM

Dear Steph,

I'm thinking of you and sending you lots of love and hug. No matter what you are and will be the winner in this hard battle because of your brave and positive attitude.

kristen · 01-21-2006, 04:20 AM

Dear Steff,

I read this post earlier and didn't know what to say. Yes, I am sorry it has come up again. Yes, if anyone can get this into a NED condition you can! I also feel well pooey, to say it nicely.
But that isn't what I wanted to say. I just wanted to say thanks for all your emails and support and advice. You are a true assest to this board with your wisdom and courage and openess. Your a helping hand in on a seconds notice. The way you and Pattyz helped me out wth my friend in Canada, was just awesome. You are such a good person. You will be in my prayers always, everyday to get rid of these nasty mets. I wish you a easy treatment, as easy as one can have. I wish you the best scenario for these mets and getting them under control. I know your strong and have the will of an ironman. If there is anything I can do, please let me know. My very best to you Steff. Have a safe journey.

Sheila · 01-21-2006, 10:13 AM

Steph
Seems like just when we think we have climbed a mountain and won, we see another in the distance...you are in my prayers that this too shall pass with a great outcome....it sometimes gets me down to know that our journey seems to rear its ugly head just when we are feeling so positive...but with your strength as you have shown us all through your journey, you WILL come out the winner! You have been such an inspiration to me and many others on this board, and taught us how to deal with adversity in a very proud and straightforward manner...and I thank you for that. Sending good vibes and prayers to you, and let me know if there is anything I can do.

hope · 01-22-2006, 08:42 PM

Sorry to hear about your news. You will continue to be in my prayers. You have always been a great inspiration to me. Hope

RobinP · 01-22-2006, 08:57 PM

So.................... sorry, keeping you too in my prayers.

al from Canada · 01-23-2006, 06:33 PM

Dear Steph,

Isn't it wierd that 2 of you from SABCS came back home to discover brain mets? We talked about this before but I would like to publicly offer Linda and my support. This is an evil disease and as long as we can keep communications open in this public forum, more people will stand-up and be counted and lobby for more research, funding and trials. Sub standard and withheld treatments should be a thing of the past; let's make sure we do get the best treatments available!
Steph, we are waiting for you to show us the way and show us what success means.

Al and Linda