Update on Bixbabe

By tweetyb
Posted August 30, 2008 at 10:11 am · 15 replies
In Non-small cell lung cancer - General
Edited August 30, 2008 at 2:07 pm

Hi Everyone,
My mom is Eileen (Bixbabe) she is at Moffit and she has swelling on the brain, she also has 3 tumors on the brain 1 very large and 2 small, they are trying to get the swelling down with steriods, once they do that they said they will have to do whole brain radiation and possibly surgery to remove the 1 tumor or a piece of it, my mom is hysterical and sooo worried about this she wanted me to come on and ask if anyone here has also heard of or had this procedure done to them..any input would be helpful...thank you all and God Bless..Gina

15 replies

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By stage4survivor
Posted August 30, 2008 at 10:23 am

Tweety,

Whoa! Hold on there!
Where is she being treated? How large is the major mass?
Can she go elsewhere for treatment? GammaKnife/CyberKnife may be a MUCH better initial treatment.

Sincerely,

G

By Ramona
Posted August 30, 2008 at 11:39 am

I agree with stage4. Get to a major cancer center immediately for a 2nd opinion. Do not worry about hurting anyone's feelings by doing so. This is your life as opposed to theirs.
The good news is that lc brain mets usually displace the brain rather than eating it. That means possibly no brain damage. I know because I had a huge one sugically &successfully removed. Loss of equilibrim is how I began this journey.

By tweetyb
Posted August 30, 2008 at 2:07 pm

Mom is at H.Lee Moffit in Tampa Fl its one of the best cancer hospitals..they are continuing to give her steroids every 6 hrs to shrink the swelling they said once that is done than they can give her whole brain radiation

By stage4survivor
Posted August 30, 2008 at 6:20 pm

Tweety,

Unless you're leaving out very pertinent details, ie some of my questions above, then this place is NOT one of the
"best" cancer hospitals.

Ask them about GK/CK looooong before signing up for WBR!!!

G

By tweetyb
Posted August 31, 2008 at 8:11 am

My mom Bixbabe said that the Dr's at Moffit here said that they cannont use the Gamma knife this one tumor mom didnt tell me why but they did say that once they remove this one the can use Gamma on the other 2 smaller ones...she is feeling confident about this Hospital and their Dr's..I think she is not telling me everything because she does not want to worry me..Yeah right! worried anyway but i do belive her and my dad have drain them with question and different alternatives and for some reason this is the way they have to go with this one larger tumor...so now we just have to pray and hope for the best...thank you for all your responses...Gina

By tweetyb
Posted August 31, 2008 at 8:12 am

Her mass is 1 inch in size

By stage4survivor
Posted August 31, 2008 at 9:33 am

Tweety,

As long as the doc using the GK feels it can't be used then that must be the case(I hope).
OTOH, if your mother, and father, have confidence in this plan, that is the most important factor.

Best of Luck,

G

By Jazzy
Posted August 31, 2008 at 8:27 pm

Without actually seeing the patient and knowing all the pertinent details, is it appropriate to tell the person writing in that 'Whoa, they've made the 'wrong' decision and 'whoa' they're at the 'wrong' medical institution? Moffitt has a great reputation. I say that as someone who is very well plugged in to the cancer community. Even if you're an MD, this is not the place to practice medicine without actually seeing the patient and reading the medical history.

By tweetyb
Posted August 31, 2008 at 10:25 pm

Thank you Jazzy I agree and I appreciate your understanding..the Dr's and actually everyone at Moffit have been quite wonderful and my parents are very confident with the Dr's decision to go this route, we are all very hopeful and once they remove this 1 tumor that is 1 inch in size ( this big one is the one that is causing my mom to have mobility problems with her left side) then they said they will go ahead at start radiation on the other 2 small ones in a few weeks..so the outcome looks good and the most important thing is that my mom is confident in their choice, her and dad definately question and grilled any other route but they have to remove this one first in order for her to get some relief and then be able to start radiation...thanks for you input Jazzy!

By stage4survivor
Posted August 31, 2008 at 10:30 pm

jazzy,

Given the information provided I stand by my opinion and that doesn't constitute "practicing medicine". People need to make INFORMED decisions, sometimes that means "WHOA", slow down and understand all available options. Unfortunately, not ALL options are presented, especially if a given institution doesn't offer these modalities. This includes some of the major cancer centers in the US.
People need to ask hard questions no matter where they're being treated. My intent is to help know what questions to ask.

G

By Gretchen
Posted September 1, 2008 at 9:35 am

Moffitt is a major cancer center and we are lucky to have it in Florida. I am going there for my second opinion next week. I have a lot of confidence in them, and you can too.
Gretchen

By tweetyb
Posted September 1, 2008 at 2:29 pm

They are truly wonderful there and it IS one of the best Cancer hospitals, my mom is very happy and confident there...I think you will be very happy with them...I hope it works out well for you too!

By chuck
Posted September 2, 2008 at 1:59 pm

To Tweetyb, I wish you and your folks the best in this disease battle. I agree with Jazzy 100 percent. Sometimes people forget we're patients, not doctors. If your folks are confident with Moffit, just love and support them. Sincerely, Chuck Darnell

By LindaFL
Posted September 2, 2008 at 5:15 pm

I agree with the kudos regarding Moffitt. I would feel confident in the care they're offering your mom. I did alot of research and got some inside scoop and its the place to be in the southeast. If you or your parents feel like you need/want a second opinion, I would suggest coming up to Shands in Gainesville. Otherwise, I think you're in good hands. Good luck!

By tweetyb
Posted September 2, 2008 at 7:54 pm

I am behind my parents and Moffit all the way...A great positive attitude that my mom has will help her conquer this beast!! Thank you all for your support at this difficult time...this to shall pass!!...

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