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Treatment options... Ideas??

Meegs
Posts: 14
Joined: May 2013

Hi guys

 

so I'm in New Zealand and feel that we have limited treatment options here... I have just had 5 days of radiation to the brain and that's all the docs want to do. The two tumours are inoperable and they are just hoping to slow growth with the radiation.

gamma knife has come to my attention which I am going to look into, I am happy to travel for treatment.. It's worth trying anything! Does anyone have any other ideas of different things offered that I should be looking into?

thanks :)

KTeacher
Posts: 1091
Joined: Jan 2011

I have gone through a lot of treatments since 2010.  In 2013 I had a tumor on the base of skull.  Doctors used Cyberknife, it worked.  All MRI's since show it shrinking, dying.  It is very expensive without insurance.  Was your 5 days IMRT?

phrannie51's picture
phrannie51
Posts: 4085
Joined: Mar 2012

to the US.....why not have your scans and files sent to MD Anderson in Houston?  People from all over the world go there.

p

Meegs
Posts: 14
Joined: May 2013

I don't know what they call it here to be honest.. Whether it's imrt or what. 

Is it easy enough to send stuff to another hospital? I wouldnt even know where to start haha :)

debbiejeanne's picture
debbiejeanne
Posts: 3023
Joined: Jan 2010

meegs, I'm sorry the docs say the tumors are inoperable but don't give up, they don't know God's plan.  There are a few here who were told 7 and 8 yrs ago they had 6 months, so the docs don't always know.  Never give up.

God bless you,

dj

TracyLynn72's picture
TracyLynn72
Posts: 779
Joined: May 2013

My surgeon here in North Carolina has people from all OVER the world come to him.  He had to reschedule my appointment due to a man coming from Germany to consult with him.  IF you can travel, I'd at least have my records sent over and talk to someone else.  Best wishes!!!

michdjp's picture
michdjp
Posts: 213
Joined: Sep 2011

Hi, I was just wondering what doctor you see in North Carolina. I live in ny and went to Wake forest baptist hospital to see an ent there.

michelle

LumpinmyThroat's picture
LumpinmyThroat
Posts: 88
Joined: Jun 2014

Look into Cyberknife.  They have a facility here in Austin, Texas and several others around the country.  MD Anderson in Houston is a good hospital as well as someone mentioned.  The only trouble with them is the long lines of patients between you and the machines.  The kids get priority (which makes sense to me), so there can be a wait time to get appointments.

Goyca
Posts: 206
Joined: Apr 2014

Meegs, u got to fight this. Get all ur scans and records and go to MD Anderson (I know its easy said than done) for me I couldn't cz financially it was too much. But still contact them, there is an international center where they have a representative for each country, I tried it they were helpful.

 

and as others mentioned, there is cyberknife technique.

 

hugs, 

Goyca.

hwt's picture
hwt
Posts: 2236
Joined: Jun 2012

I had SBRT at the Mayo Clinic in Rochester MN. Base of skull tumor was wrapped around carotid atery and inoperable. Tx was 5 consecutive days. Tumor gone. Had recurrance on opposite side, same tx, it is gone too. If you call and send records, they will likely review before you travel.

Meegs
Posts: 14
Joined: May 2013

Thanks everyone, still working on things and am contacting a few places to see if anyone has options for me! 

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