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Brain MRI - Hmmmm
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Well my friends...
The goo is not all gone. But, it is a pale shadow of it's former self! Not smaller really, but so much less dense that it's hard to see unless you know where to look. (which I do, at this point!) So, that means the Avastin is doing what we hoped...it's just not finished yet. The plan - though the goofy tumor board will probably recommend the craniotomy option again when they meet on Thursday - the plan that we will actually be implementing is to continue Avastin, and scan again in two months. I am so fortunate, blessed even...that my surgeon is actually a pioneer in the use of non-surgical treatment of these sorts of brain "issues". He only came to Penn about 3 weeks before my brain met diagnosis. Coincidence? Or God taking really good care of me? I wonder... Dr. Brem did caution me yesterday that often microscopic BC cells "hide" in the necrotic areas and sort of "get used to" the Avastin...then start to grow and cause new problems. I assured him that in that case...my Lapatnib would just step in and squash them! He has pronounced me his "STAR PATIENT" and asked me record a video clip to include in the presentation he's giving this week to a group of medical and radiation oncologists. My case is apparently exactly what he's been trying to convince oncs to do. Now, even though I am not happy about my piggy little face being captured on video...I agreed...because it struck me that if even one of those oncologists actually listens to what I say...and that spares one patient from unnecessarily harsh, or dangerous treatment...my pride just wasn't that important. (Besides, he promised NOT to post it online anywhere!) :) In the clip, I asked the doctors in the audience to please try all the possible targeted treatment options before recommending the "nuclear options" like whole brain radiation, and craniotomy. In the clip, I told them, "What goes on in my brain, makes me who I am. I trust my doctors to protect that. There are worse things than being dead. Honestly, if I can't be me anymore...I don't want to be alive." Now, on a lighter note...when I viewed the scan images...I found two very interesting things. I think they may explain my sense of humor...and why I seem to laugh an awful lot. I've circled them in red...so you could see them too! If you look closely, you'll see that both Mickey Mouse, and some smiling guy wearing sunglasses are hanging out in my brain. I sooo hope people in heaven can still check in on us...because this is just the sort of thing Chrisy would have cracked up over! CTs tomorrow! Prayers welcome on that front too! Thanks for checking in on me! You guys rock! Denise |
Re: Brain MRI - Hmmmm
Denise,
Today - your are my hero! I am so pleased for you that Avastin is helping. And that you are brave enough to make a video with puffy checks. I'm sure if we do chinese face reading puffy cheeks mean something very positive! You are a STAR! Shining bright, and funny too. |
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Denise,
You are definitely a "STAR." So glad the Avastin is working. Praying for continued good results for you sweetie. all the best caya |
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Love that star brain of yours!
- Penny |
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Hi -
Glad there is some real evidence of improvement other than you just saying so! I am so familiar with those MRIs! Seen literally dozens of mine by now. But don't recall seeing the Great Mickey in any of mine. Maybe you were meant to be a Mousketeer! However, in the second scan it looks like a grasshopper's head to me. So, I hope it will just hop away with the rest of that fading gunk. |
Re: Brain MRI - Hmmmm
Aw shucks, Denise, that's just about as good a bit of news as anyone could ask for! I bought a bottle of GooGone last week and thought of you, naturally. It didn't do what I had hoped so I am glad the Avastin is a better producer!
Thanks for being brave, bright, and brilliant you (thanks to your Mickey Mouse brain!). |
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Way to go NEDenise!!! Love your attitude. And your language.
You nailed the message, broadcast to many... In the clip, I asked the doctors in the audience to please try all the possible targeted treatment options before recommending the "nuclear options" like whole brain radiation, and craniotomy. In the clip, I told them, "What goes on in my brain, makes me who I am. I trust my doctors to protect that. There are worse things than being dead. Honestly, if I can't be me anymore...I don't want to be alive." I see Mickey Mouse for sure! That must be your laugh button, not sure about the smiling guy with glasses, but like Rorschach pix, what I see is a smiling doggie. Very cute btw. Thanks for the red line. How do you do what you do???!!! I was not happy with Dr. B's microscopic BC cells "hide" in the necrotic areas and sort of "get used to" the Avastin...then start to grow and cause new problems... DO NOT LET HIM PLANT A SEED IN YOUR BRAIN! I had lobular bc, which hides, I know, but... Your brain goo is fading slowly but surely, maybe trying to hide in the shadows, but again... My necrotic areas in my liver viewed as diminishing bc tumors (ea measured and reported precisely w/ea ev 8 wk scan) were viewed by 2 totally unrelated, independent radiologists. I had 3 oncs, for some reason. I'd found 1 on Long Island where I lived, another in Westchester and another in Manhattan. Westchester onc asked me to bring in my scans for HIS radiologist to read. That radiol had worked at Sloan Kettering. He said what he saw he did not think were tumors, but the dead remains of tumors, cyst-like, filled w/fluid. He believed what he was looking at were the dead remains of tumors. Manhattan onc, lo and behold, asked me to do the same thing. Bring scans for HIS radiologist to read. And he said -- exactly the same thing. I stopped Taxotere (after 9 mnths, fluid around my heart and around my lungs, dragging my tail) -- hoping Herceptin alone would keep me stable. Those dead remains of tumors are still visualized (since '99) and exactly the same. They call them STABLE. Do not fret. Say good bye and good riddens to your uninvited guests. They are going down and out. And you had the perfect answer as well, if Avastin fails, you have backup!!!!!!!!!! Thanks for keeping us in the loop, amazing lady! Oh, just scroplled down and see guy in sunglasses. Looks like a skull to me. Like a dying entity. And he is smiling. Must be very tired fighting against you. Glad to go. Happy for him... And for YOU!!! Much love, Andi |
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How funny to see Mickey mouse in that brain scan! :) I'm glad you are doing so well, Denise.
Paula |
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Denise
You are truly an amazing patient. I wish you the best in sweeping out the bad cells altogether. I can't wait for the day when we can say, "Oh, I just got dxd with HER2," and we treat it just like an infection, with a pill waiting at the pharmacy to get it out--for good. Yours, Karen |
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Denise,
So glad you updated us! We got ya on the prayer front. You rock! |
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Star patient AND in a helpful film. All of this sounds great.
Glad to hear positive news. Don't know quite what to say about Mickey Mouse seeking refuge in your head but we all lead rather interesting lives. |
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Hi Denise,
My prayers are with you tomorrow and always. Gods blessings to you and your family. Peace my friend, Nancy |
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Already praying for you girl...love that you were able to SPEAK and be heard...!!! Couldn't had been said better from a "Star!!"
Hugs to you... always filled with HOPE!! |
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Denise,
So glad to hear your goooo...d news. And I'm sure having Mickey residing in your brain is a good sign! You go girl! They'd probably find Goofy in my brain....... |
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Denise- you are indeed a star and a treasure all tied up into one! I couldn't agree more with your wish to hold off on whole brain or surgery! ME TOO! So thankful to see someone who get exactly how I feel and I am lucky as well in that my docs have supported me with targeted therapies.
Now I'll be curious to see what resides in my brain- besides my "blobs" as I call them :) Thanks for keeping us updated- prayers for the CT coming your way! |
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So good to see your post and hear that the Avastin is doing its thing! Loved that Mickey has taken up residence.
So glad you got to express your thoughts for the Doc's video. You are absolutely right...if it helps one other person with a course of treatment, it was worth it. Sending best, best, best wishes for continued success with Avastin. You are ever in my prayers. Barb A. |
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This is wonderful news...((hugs)) Thank you for being brave and starring in the video. Im sure it will help far more than one person.
Leave it to you to even make me laugh with your brain scan...definitely Mickey Mouse. The second one tho...to me it looks like an earthworm with big googly eyes and a graduation cap on. Im just saying... As someone who went through WBR, I agree with your feelings on it. If I had been presented any other options, I certainly would have looked into to those before going through this. Sadly, I was not, but maybe with more doctors like your doctor and more videos like the one you made will bring these other options to the forefront. Prayers to you and yours, as always. Keep squashing those cells! |
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SQUOOSH ON, NEDDY! MUSH THE GOOSH/AKA GOO...
Thinking of you............... ANDI |
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I cant think of a better spokesperson than you! So articulate. I love the message you want to express. And your doctor for being so sensitive to that. You both are making a difference. Thats what we are put here to do
Keep the faith. |
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Denise, you can always make me laugh - and it's obviously "built in"! So glad to hear the Avastin is working and I think you are a hero for championing the less intrusive options. Sure that video won't be posted? Not even here?
Much love..... Pam |
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