One patient with glioblastoma still alive nine years later
by smylee on Sat Jan 28, 2012 03:16 PM
Hi Millie, its not my dad its me with this.not for sure why nothing has been done besides the scanning every three months. not sure about radio ablation,, what do they actually do? I know the size of my tumors are staying the same and they hope that the sandastation might even shrink them ?? thanks for your concerns and replies i truly appreciate them.
by milliew51 on Sat Jan 28, 2012 04:34 PM
I sorry, I dont know why I thought it was your Dad....But the radio ablation they go into the liver with a prob and send my terms hot hot air which fries em. Maybe they have to be a certain size Im not sure on that. What is sandastation? Chemo? Im on nexavar and it has gotton rid or 4 of my 6 mm size tumors, the other 2 are staying the same. How long have you been on the sandastation? excuse me if Im repeating my questions but the chemo gives me chemo fog and I can hardly remember anything short term. Are you getting any side effects from the chemo? I feel like we're in this awful night mare together, and Im so happy to have someone to chat with about this.
by smylee on Sat Jan 28, 2012 04:57 PM
Hi Millie, Oh dont be sorry, Well my tumors i have one the size of a lg grapefruit, a few the size of an orange and several small ones, i dont do chemo at all they say chem dont touch the carcinoid cancer?? i take the sandastation for the tumors gave me hot flushing and also SEVERE diareah (?) something i've never really experince ever :( so i go for a scan every 3mths to check the size. where did yours start and did you say it spreaded? yes i loke to be able to get on here and read up and communicate with people with the same thing. its a long hard road :( ttyl
by milliew51 on Sun Jan 29, 2012 12:32 AM
Mine started in my liver 2 tumor a year ago may. It was 8cm they removed half my liver then i was cancer free for a year. It came back 2 tiny tumors in my liver and thats when they did the radio ablastion which was a success and fried the 2 tumors but when they did a ct scan to check the success of radio ablastion they discovered 5 more had came and then i started having lower back pain and they ordered a mri and cancer was found in my spine they did radition on that and that is dead now. thats when they put me on nexavar (chemo) I also have severe diareah and pelling of skin on hands and feet alittle nausea and sores in my mouth.Other then that i feel pretty good and pray that I will beat this crap. I,ve even decided to return to work. I go back feb 6th. Wish me luck!
I try to keep good humor to get me through this. I also think going back to work and being active is a good key to winning this battle.
by milliew51 on Sun Jan 29, 2012 12:52 AM
Hey I just read an acticle on cryosurgery you should check it out.
by smylee on Sun Jan 29, 2012 01:16 AM
Hi Millie,so your started in the liver huh? and its carcinoid? because they say chemo wont touch mine. yes i am still working but it can be a stuggle at times said the tumors feed off stress well i feed mine pretty good :( please keep in touch and let me know how work is. where abouts are you located at? well have a wonderful eveing ttyl vicki
by milliew51 on Sun Jan 29, 2012 01:28 AM
No mines not carcinoid mines hcc primary liver cancer with mets to my spine.
by Usalva on Tue May 29, 2012 12:14 PM
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If you were considering traveling for cancer treatment, which headline would you find more interesting?
Destination: HOPE. Cancer care that is worth the trip.
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