^Thank you both for the grapefruit juice reminder. I always check the literature when I start a new med. So far -- knock on proverbial wood -- I've never had to give it up.
Tora Ziyal has cancer
- Thread starter Tora Ziyal
- Start date
^Hey, you said it, not I. 
So, a bit of an update... I went for my second opinion today. This guy is on a spinal oncology team at a major university hospital. Came from another major university hospital. Looked maybe 50 years old. In other words, a highly experienced specialist. And he has never done the kind of surgery I need. That how effing rare this tumor is. Yikes.
The good news:
He referred me to someone back at the hospital where I started out who actually came there from MD Anderson Cancer Center (sorry, can't remember who mentioned them here) in Texas and has more experience w/ chordomas than anyone else in the area. So I'm waiting for an appointment w/ him.
He also said it isn't urgent that I have the surgery in the next few weeks. As slow-growing as chordomas are and as large as mine is, it's been around for a very long time.
And he thinks the "remote possibility" of it being metastasis from elsewhere is extremely remote. If it looks like a duck, walks like a duck, quacks like a duck... it's a chordoma. Yes, he really put it that way.
The bad news is that, as I suspected, it will be very complicated surgery. Basically removing and then reconstructing my sacrum. YIKES.
ETA that the new doc just e-mailed me that he will see me tomorrow at 2 p.m.. Not his office staff, but the doc himself, from his iPhone. Impressive!
The good news:
He referred me to someone back at the hospital where I started out who actually came there from MD Anderson Cancer Center (sorry, can't remember who mentioned them here) in Texas and has more experience w/ chordomas than anyone else in the area. So I'm waiting for an appointment w/ him.
He also said it isn't urgent that I have the surgery in the next few weeks. As slow-growing as chordomas are and as large as mine is, it's been around for a very long time.
And he thinks the "remote possibility" of it being metastasis from elsewhere is extremely remote. If it looks like a duck, walks like a duck, quacks like a duck... it's a chordoma. Yes, he really put it that way.
The bad news is that, as I suspected, it will be very complicated surgery. Basically removing and then reconstructing my sacrum. YIKES.
ETA that the new doc just e-mailed me that he will see me tomorrow at 2 p.m.. Not his office staff, but the doc himself, from his iPhone. Impressive!
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I am way late to the game on this one, but you have my prayers and good thoughts and vibes and *hugs*!
I had a family friend, a young man-11-who is now 13 going on 14, have a rare form of cancer a few years ago. He underwent brain surgery, chemo, radiation, you name it...and he was referred to MD Anderson in Texas as well.
He has been in remission for almost 2 years now, so when I read that your doctor was from the MD Anderson group, my heart was uplifted. I have heard and read nothing but wonderful things about staff from there.
Good luck, God speed and remember, laugh every day
Prayers also for a speedy recovery.
I had a family friend, a young man-11-who is now 13 going on 14, have a rare form of cancer a few years ago. He underwent brain surgery, chemo, radiation, you name it...and he was referred to MD Anderson in Texas as well.
He has been in remission for almost 2 years now, so when I read that your doctor was from the MD Anderson group, my heart was uplifted. I have heard and read nothing but wonderful things about staff from there.
Good luck, God speed and remember, laugh every day
Prayers also for a speedy recovery.
Thanks for the encouragement, Ladyheather. I'm about to edit my previous post -- the new doc just e-mailed me an appointment for tomorrow!
Nice one! They'll be writing you up in the medical journals so make sure they get your spine from its best side for the photos
^I'll do that, trampledamage.
i wrote to you about md anderson.
they are sorta the top flight fighters against cancer.
have not been through cancer but have had friends and non blood relatives who have.
wishing you the best.
ps
not just grapejuice but cranberry juice can interact with certain medications.
your dr's med team should be able to help you with this.
i know you have been through a rough time this last year,
but dont less this suck the fun out of life.
just the shear enjoyment of life can be a great ally.
even if it is something like working out when you can.. sitting in a garden or having a food fight with m&m's(they are easily swept up)
they are sorta the top flight fighters against cancer.
have not been through cancer but have had friends and non blood relatives who have.
wishing you the best.
ps
not just grapejuice but cranberry juice can interact with certain medications.
your dr's med team should be able to help you with this.
i know you have been through a rough time this last year,
but dont less this suck the fun out of life.
just the shear enjoyment of life can be a great ally.
even if it is something like working out when you can.. sitting in a garden or having a food fight with m&m's(they are easily swept up)
You'll be able to tell for sure when you meet him--but with such complicated surgery being needed, it's very good to hear that someone this responsive to his patients will be looking after you.
A
Amaris
Guest
Nice one! They'll be writing you up in the medical journals so make sure they get your spine from its best side for the photos
Agreed. Also, ask for 10% of the profits from the surgery photos.
Thanks, everyone.
Ah, thank you for reminding me it was you. I got a bit carried away deleting pm's. Yes, MD Anderson and Memorial Sloan-Kettering seem to be the two biggest players.
Interesting, I'd never heard that about cranberry juice. But I don't drink it anyway.
I promise, no Borg parts. Love you all, too.
Good point. I just hope it ends up being him. I don't want to have to go out of state, which would probably be the next alternative. And I don't want to have to fight w/ my insurance company to get them to approve my going out of state.
Ah, thank you for reminding me it was you. I got a bit carried away deleting pm's. Yes, MD Anderson and Memorial Sloan-Kettering seem to be the two biggest players.
Interesting, I'd never heard that about cranberry juice. But I don't drink it anyway.
I promise, no Borg parts. Love you all, too.
with such complicated surgery being needed, it's very good to hear that someone this responsive to his patients will be looking after you.
Good point. I just hope it ends up being him. I don't want to have to go out of state, which would probably be the next alternative. And I don't want to have to fight w/ my insurance company to get them to approve my going out of state.
From what you are posting, you have a good chance to beat this monster...
Apparently our thoughts and prayers are working... All you seem to need are positive thoughts, a good surgical team, some Chemo/Radiation therapy and a good dose of courage... And I'm sure you have more than enough courage...
Again, all my hopes and prayers
Apparently our thoughts and prayers are working... All you seem to need are positive thoughts, a good surgical team, some Chemo/Radiation therapy and a good dose of courage... And I'm sure you have more than enough courage...
Again, all my hopes and prayers
Good luck with the doctor tomorrow, Tora.
Definitely still praying for you. You can add me to yahoo, if you have it maquiswoman@yahoo.com (don't worry I love Cardi...assians )
)
Slow growing, non-metastatic tumor, experienced and concerned specialist-- this is all good news. Nobody wants to undergo complicated surgery, but as long as it's do-able it's good news. I hope today's meeting goes well.