These dr's are confusing me, after my last scans my onc wanted me to go on hospice. Then a week later when I refused that he wanted stereoactic radiosurgery on my brain right away. Went to radiation onc and he agreed but wait 3 weeks, have another brain MRI then consider it. Since MD Anderson has contacted onc for copies of my records he seems to have changed his mind. Last weeks visit he was talking irinotecan for 2nd line when at the 1st of the month he said more chemo would kill me.
Not sure if I posted this or not but I've had some falls in the middle of the night going to the bathroom. The last one I don't remember what happened at all. Well I had another one last night. This is the first time anyone has been with me at the time. He said I had seizure symptons. When he picked me up off the floor I was curled, feet didnt touch the ground. Even more disturbing is he said a lot of times in my sleep my legs "bang" together in a similar manner.
Good news is MD Anderson accepted me and I have my initial appt on Dec. 2
Even more good news, I said the H*ll with everything, I'm going on a cruise before they get to my brain again. Leave Monday
Bon Voyage
Julie
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Not sure where I'm at
- By jadams
- Posted November 22, 2008 at 10:22 am · 20 replies
- In Small cell lung cancer
- Shared with the public
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20 replies
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- Newest first
- By Marg
- Posted November 22, 2008 at 10:39 am
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WOW, I don't know what to say, except, I've prayed for you, have a good time on the cruise, be careful.
- By Marylou1
- Posted November 22, 2008 at 10:43 am
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Have a blast on the cruise before MD Anderson, then get to the bottom of this. Somebody has to have some answers. They always do. I am praying for you and your doctors to come up with the right answers.
***Hugs***
Marylou
- By Marine
- Posted November 22, 2008 at 10:47 am
- Report post
Julie,
Have a great time on the boat and then get back to the fight. You can do it. Thinking of you always.
Skip
- By stage4survivor
- Posted November 22, 2008 at 10:52 am
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Julie,
What do you have in your brain? Sorry, I didn't find the story.
G
- By summeron2001
- Posted November 22, 2008 at 10:54 am
- Report post
Julie - glad you got accepted at MD Anderson. Have a great time on your cruise! A vacation is just what you need.
Sending hugs your way.
- By jadams
- Posted November 22, 2008 at 10:56 am
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Not sure that I have posted it, been in shock all month. I had whole brain radiation in August but Oct MRI showed two lesions to the brain. One in the cerebellum and one on the frontal lobe (not actually on the brain)
Thanks for the posts
Julie
- By stage4survivor
- Posted November 22, 2008 at 11:19 am
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Julie,
Were these present prior to WBR?
When were they discovered?
Do you only have these "episodes" at night?
What meds are you currently taking?
I hope I'm not prying but, I have some misgivings about this cruise should these "episodes" become more frequent or more severe.
OTOH, I am an ardent supporter of GK &/or CK treatments! These could alleviate or eradicate the tumors and their symptoms.
Sincerely,
G
- By texaszan
- Posted November 22, 2008 at 11:37 am
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You're such a fighter and such an inspiration. The cruise sounds like a great idea to me. Cruise and snooze and come back and fight, fight, fight.
- By StacieK
- Posted November 22, 2008 at 11:46 am
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Julie,
Woo hoo - have a great time on your cruise! I'm praying for you and hope your new doc will come in with guns a blazin!
Stacie
- By Ramona
- Posted November 22, 2008 at 12:52 pm
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I'm with this one: Have a blast on the cruise before MD Anderson, then get to the bottom of this. Somebody has to have some answers. They always do. I am praying for you and your doctors to come up with the right answers.
I think MD Anderson is the way to go. Sounds like your onc is coming up with too little too late. Would it be possible to consult further with MDA before the cruise what with the seisures?
- By L2d2b3a
- Posted November 23, 2008 at 7:55 am
- Report post
Enjoy the cruise as best you can! I wish I could afford to treat my hubby to a nice trip before he isnt able. Take care and we will be here praying for you! Lucy
- By jadams
- Posted November 23, 2008 at 8:52 am
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Thanks everyone for your kind words. I'll take your advice and enjoy the cruise.
Julie
- By 8wall
- Posted November 23, 2008 at 9:04 am
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Good for you..Good Luck..You are correct in evry way! Bravo..
- By sunshineray
- Posted November 23, 2008 at 11:16 am
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Grace.... Grace..... and more Grace!!!
Julie, you can do it!
Enjoy the breeze and the sunshine
and remember when there's hope.... a miracle awaits.
- By pattyp1
- Posted November 23, 2008 at 3:34 pm
- Report post
Hey, Julie,
I am so very jealous - a nice warm cruise sounds so so so very wonderful!!! I hope it is as wonderful as can be!!!!
hugs
Pat
- By erinroro
- Posted November 24, 2008 at 7:50 am
- Report post
Julie,
You go Girl! Have a great time on the cruise! Show the old folks, (and the young ones too!), how to have a great time! I'll be looking for a long post from you telling us about all the fun you had on the cruise - although you will have to remember that this is a PG-13 group here!!!!
Have a great time on the water - and leave all your worries and stresses here on the land. We (all of your buddies here on LCA) will be happy to watch them for you while you are on the cruise.... they may or may not be here for you when you return, but that's OK too!
Happy Cruise, and Happy Thanksgiving!
Erin
- By RiaRia
- Posted November 24, 2008 at 9:57 am
- Report post
Have fun cruising - and worry when you return.
m
- By jadams
- Posted December 1, 2008 at 11:12 am
- Report post
Just a note to thank everyone and let you know that the cruise was just what the doctor ordered even tho the embicile would rather I stay home with hospice. Maybe it was the sea air, cause I felt great while onboard! I took my 2 daughters as a Thanksgiving / Christmas present. Smart huh. don't have to worry about Christmas now!! Back to normal tomorrow tho, Radiation Onc is going over the MRI I had the day I left then on to MD Anderson for 2nd opinion. I'd rather be sailing!
Julie
- By spot24
- Posted December 1, 2008 at 11:32 am
- Report post
stay in the fight!!!!! Will pray that MD Anderson assists you in every way!!!!!
- By debra1
- Posted December 1, 2008 at 12:20 pm
- Report post
Julie
I have not been on the site for a while....if I would have seen your post, I would have been worried about you going with the seizures.....I am glad you had fun and let us know what MD Anderson says after your appointment. I know you are a fighter and just need an oncologist who wants to fight with you.!
Thinking and praying for you.
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