Head radiation shakes up your immune system. Don't panic until you have seen the doctor. Ann...
3288
Nadine A.
naycordova
Feb 21, 2011 6:06 pm
Got my CT results back and they are normal. So what's causing the dizziness? Sent from my Verizon Wireless BlackBerry ... From: uswoods5 <uswoods5@...> ...
3289
uswoods5
Feb 21, 2011 6:22 pm
Not sure what causes dizziness. Would you please complete my survey, open to people with clival chordomas, set up to see if there is enough interest to run a...
3290
desti625@...
ladonna.hoyt
Feb 21, 2011 10:09 pm
Have you changed any medications recently? That could do it. Or if you have an inner ear infection or Vertigo, that could also make you dizzy. You might...
3291
desti625@...
ladonna.hoyt
Feb 22, 2011 1:04 am
PS...I just saw a story on tv about iron deficiency/anemia. Apparently dizziness is one of the symptoms for anemia. Have you had your iron checked? LaDonna...
3292
Nadine A.
naycordova
Feb 22, 2011 1:09 am
Thanks LaDonna. I will check with the doctors. I've been referred to a neurologist, so we shall see. Sent from my Verizon Wireless BlackBerry ... From:...
3293
Lisa Vanelli
lmvano
Feb 23, 2011 2:36 am
My dad was first diagnosed in 2006. His recurrence was discovered in 2010. Wishing you all the best! Dad is on Medicare and a Med Sup plan as well. ...
3294
Lisa Vanelli
lmvano
Feb 23, 2011 2:41 am
My dad took Gleevec after his recurrence was discovered Feb/2010. But, the tumor progressed while he was on it (it was inside his spinal cord this time) and...
3295
Lisa Vanelli
lmvano
Feb 23, 2011 2:47 am
my dad did not have any side effects from the proton beam therapy (thoracic) aside from being a little tired...just a little redness...also, he has the little...
3296
Lisa Vanelli
lmvano
Feb 23, 2011 2:52 am
I keep my dad up-to-date with what is happening with the group! He doesn't us the computer much! ________________________________ From: Kimberley Palacios...
3297
Austin Moore
amoore5535
Feb 23, 2011 2:39 pm
Hang in there Kimberly we are with you. I have had the big resection of the Sacrum. .......I am O. K. austin ________________________________ From: Kimberley...
3298
Austin Moore
amoore5535
Feb 23, 2011 2:49 pm
I took Gleevec and it had no effect!!! Austin ________________________________ From: marypattison60 <MPatt57@...> To: Chordoma_Support_Group@......
3299
Austin Moore
amoore5535
Feb 23, 2011 2:56 pm
Lisa...Glevec did not work for me. Attitude is going to be importent. Austin ________________________________ From: Lisa Vanelli <lmvano@...> To:...
3300
Tibela Marcovitz
tibela.marco...
Feb 25, 2011 2:12 pm
Hi All, I'd like to present the forum with two questions. Your responses are greatly appreciated. a. Biopsying what might turn out to be a Chordoma poses a...
3301
uswoods5
Feb 25, 2011 2:24 pm
Remember we have no doctors here so you are getting amateur opinions. My surgeon was 99% sure that my tumour was chordoma or chondrosarcoma before the surgery....
3302
shozgirl@...
shoozgirl
Feb 25, 2011 5:06 pm
Hi Tibela: From my understanding and experience with this, talking w/the top Drs and reading PubMed studies , biopsies can be dangerous and in my case they...
3303
MPatt57@...
marypattison60
Feb 25, 2011 5:11 pm
hi All I had the same thing as Ann. But biopsy and surgery - the tumor didn't come back for 8 years and now at 9 years the doctors are looking into what...
3304
fae
dansfae
Feb 25, 2011 5:31 pm
In my case I had a TIA and was sent by my general physician to have an MRI. The surprised radiologist wouldn't let me leave the facility until he showed me...
3305
Robert Schoelkopf
rschoelk
Feb 25, 2011 7:57 pm
My two cents: No, I don't think there is a definitive diagnosis that can be made without a biopsy. However, the experienced specialists I met could see some...
3306
uswoods5
Feb 26, 2011 8:19 pm
Everyone: we got a notice from the NIH who are holding a special study day on rare diseases on February 28th, organised by the NIH Office of Rare Disases...
I totally agree with Robert Schoelkopf!! Austin Moore ________________________________ From: Robert Schoelkopf <robert.schoelkopf@...> To:...
3309
Shane Knee
shaneknee
Feb 28, 2011 3:37 pm
Excellent post Robert and spot on. There are also rare occasions, like in my case, where the pre-op biopsy or biopsies prove to be wrong, or the neoplasm...
3310
MPatt57@...
marypattison60
Feb 28, 2011 7:09 pm
Hi Everyone. I think a biopsy is needed in almost every case. There is a chance that this would turn into sarcoma. I had a biopsy a couple of weeks ago and...
3311
uswoods5
Feb 28, 2011 9:05 pm
Got my letter today, it took several weeks. They are going to phone in a week or two to do the formal work up, then send the kit. When I signed up, I asked...
3312
Nadine A.
naycordova
Feb 28, 2011 11:23 pm
I'm guilty! Mine has been sitting on the counter but with good reason. I got a bad viral infection and put on antibiotics when I got my packet 3 weeks ago. I...
3313
MPatt57@...
marypattison60
Mar 1, 2011 12:29 am
Hi Everyone I got a phone call today about the Study. They will be sending me the letters, etc. in a couple of weeks. When I talked to the nurse, Valerie,...
3314
caribemma
Mar 1, 2011 12:58 am
Hi!! Nadine, I'm guilty also! I can't drive because of my double vision and have to coordinate the spitting with the transportation to the post office. I'm...
3315
Oregon Green Thumb
sa2m44
Mar 1, 2011 1:55 am
I may be wrong but I don't think there is a problem if it sits for 2 days as it is already going to have to spend at least that much time in the mail. They...
3316
Martina21@...
baurboys3
Mar 1, 2011 4:22 am
Hello! Would you kindly repost the information to contact them... thanks so much! (I think there was some reason we didn't qualify, but I'd be happy to...
