Please remember that these discussion boards are a public forum, which means open to the public (i.e. non-CSN members) and the content can be found via internet search engines. Members are strongly advised not to share personal identifiers such as real names, email address, telephone number, street address, etc. This information can be used to identify you and link you to the content you provide. Other areas of CSN are restricted to members only and cannot be found by search engines.

Brain Cancer

decadron and moon face
Was wondering how long after the decardron is stopped that the moon face goes away? Cant wait for this drug to go away, I dont like what it has done to my sisters personality. If dealing with the GBM isnt so over the top. Talk about walking on egg shells,Im walking on glass barefoot...Im BLEEDING....
Radiation induced deficets: permanent or temporary?
Our son, who is 34, has GBM. He had surgery on April 18, and only enough tissue was removed to get a biopsy. He is currently midway through radiation and Temodar treatment. However, since he started radiation, he has really declined, especially re: gait, fine motor, and speech. Last week, the docs were concerned that maybe…
Oligodendroglioma Grade II Temodar and Radiation
Just diagnosed Nov 2010 with Oligodendroglioma II. Had immediate surgery. Now I am getting ready to start 6 weeks of radiation and 12 months Temodar. However, I'm not finding anyone who is doing both of these concurrently as a first treatment for oligo II. Not sure about the 1p, 19q as the sample they sent was…
GBM and independence issues
My son (GBM dx 4/18/11 at age 34) just finished his 5 week Temodar/radiation regimen. Because he had radiation to that same part of the brain when he was 8 for a medulloblastoma, the doc felt that his brain tissue couldn't tolerate the full standard radiation dose, so he just had 2/3 of the standard dose. While I wish he…
GBM IV Just got the doctors orders
After one more MRI, finally the doctor has given me a course of treatment: six weeks straight radiation and chemo( temodar) ... The chemo drug seven days a week, and radiation Monday through Friday for six weeks. I am 56 YO male in good health otherwise, and am not prone to any nausea like symptoms. What has been…
ribbon color
Good morning all, I was just wondering if there is a color ribbon for brain cancer and lung cancer. My sister-in-law just passed away and I would like to honor her by wearing a ribbon for her. I wear one for myself--I'm a breast cancer survivor, going on 3 1/2 years now... Angie
When do headaches (post-surgery/radiation) become a problem?
Some background: I was diagnosed with GBM last October, had a 99+% resection, had standard radiation/Temador, and just finished my 6th round of 5/23 Temador and had a clean MRI last month. Unfortunately, I had my first seizure a few weeks ago and I am now on Keppra (1000 mg/day). I am still going to work, though I am…
Brain tumor diagnosis and Social Security Disability
Our son was diagnosed with several inoperable brain tumors in April. He has one week to go with the radiation and first round of Temodar. The docs say that any treatment will not make them go away, just "slow things down." The radiation has taken a heavy toll (mainly because this is the second time to be treated with…
Help
CSN helped me a lot in understanding my dad's situation.Thank you very much all the members who shared their journey in coping with the this decease. My dad(70 years) has been diagnosed with left temporal GBM 4 on June7, 2011. He had undergone Craniotomy and excision of tumor on June 15, 2011 in India. He is soon to start…
Vale Grace English
My wife has lost her battle with her GBM at 4:30am, Australian EST Sunday 19th June 2011. May she rest in peace. Fortunately the cancer has not disfigured her or reduced her looks for that I am truly grateful. For all your support and encouragement and online help I than you. She is to be buried in Innisfail, FNQ her home…
Visual Field Disturbance Linked to Heart Beat.
Last August I was successfully treated with radiation for cancer of a vocal cord. I am still cancer-free, and have my fingers crossed. However, I've developed a visual disturbance linked to my heart beat. My visual fields "jump" with each beat. An Ophthalmologist says my eyes are fine, and I have an appointment to see a…
GBM IV in my daughter 5 years old
My daughter 5 yrs old was found to have Supratentorial Glioma in the CT scan. She was operated with complete removal of the tumor last week. The histopath report shows Glioblastoma GBM IV. The doctors are reviewing the reports and would shortly call us for the suitable treatment. Would request inputs from members... Tnks…
grade 4 glioma
Hi all. I am new here and this is a club I did not want to join, but my wife is diagnosed with stage 3 glioma and is to shortly receive surgery to tame the beast a bit prior to chemo and radiation. I don't know how long she may have, but she is extremely healthy in all other ways and is a relatively young 42. If anyone has…
my first seizure was yesterday
Since my GBM 99+% resection in October 2010, I have been going into work on a regular basis and overall have been amazingly functional (no sign of tumor at a recent MRI). Yesterday what was normal changed. I had a seizure at my desk. A coworker found me on the floor shaking for a minute and called 911. After I arrived at…
had a siezure friday P.M.
Late afternoon Friday after being on DECADRON for the first week, (starting radiation/chemo in a few days)I had a seizure. Of course the wife called 911 when she heard me in screaming pain; I have no recollection of the event. This morning just as I about to take my Decadron and Pepsid she's reading about the side affects…
GBM - My Dad, my Hero
My Dad was diagnosed with inoperable Stage 4 GBM nearly 8 weeks ago. Symptoms began with him becoming forgetful, short term memory only. He left for the hardware store and forgot where he was going and what he was doing. Primary doctor did an immediate scan to reveal a large brain tumor, 3" x 2" inches. Dad is a previous…
Grace Micgraces wife
Hi The last thread was getting a bit cluttered. My wife Grace is scheduled for radiation in early July at full strength. I am trying to organise chemo at the same time as it greatly sensitises the cancer cells for destruction but they seem less keen on that approach although willing to concede it is a rather good idea. Her…
Pathology-- Grade 2 astrocytoma-- Significance of overexpression of p53?
Does anyone know what the significance is of p53? My husband pathology stated p53 was strongly over-expressed in some areas, but absent in others. Can anyone help me out on this?
glioblastoma-new diagnosis
I was just diagnosed with level IV glioblastoma this week. It has taken the hospital six months to get this diagnosis; it scares me that the whole time they were testing me this thing has been growing in my head. It is too deep down within the motor strip to be operated on and we have been searching for alternate…
revisiting alternative therapy
I'm interested in this product, and I would like to know if anybody here in this forum has heard of it or used it? The product is called HAELEN here is a link to their website: http://www.haelan951.com/
low grade Oligodendriglioma with Astrocytomas
My Husband is 35 yrs. old and had surgery on 12/10/07, were able to remove 70% resection with majority of the residual in the poseriour superiou region. Can anyone help me please with similiar symptoms and theri survival ratio.
first MRI
Well that first MRI is done. The tumor was 2.2cm x1.8 x1.9 now its 2.5x 1.7 cm. Dont even know what to think. The first MRI was in Feb treatment didnt start to the end of March like 6 weeks later. Could it of grow in those six weeks? Then we started treatment. Last radiation was May 6. Last temador and avastin the end of…
GBM - new symptom severe blistering rash
Wanted to know if anyone else out there with a loved one with GBM has experienced a severe blistering rash with yellowish pus on upper torso and back. Dad has been through his first round of treatments with chemo and radiation, and is about to begin the next phase of chemo Temodor, 5 days on, 23 days off. Still waiting for…
Gama knife radiation
Has anybody had or know of someone who has tried Gama Knife radiation. A friend of mine with Glioblastoma Multiforme Grade 4 a (1 1/2 year survior) is considering it. The reason I am interested is because I too am a GBM4 survior of 2 1/2 years. I had surgery in Jan 09 and have had relativily good quality of life. Meaning…
First MRI Since Radiation Ended
Hi Everyone - Just wanted to post the results of my husband, Jerry's MRI results. We just got the results from his first MRI since his Radiation Treatments ended on March 31st. Monday we went to his Neurosurgeon and he told us that he can't say 100%, but he is about 90% in remission at this time. He also told us that he…
hair post radiation/temador
Wondering what people are using on the remaining hair. They said to use baby shampoo during what about after radiation?
Astrocytoma III caused by cranial radiation 26 years ago--anyone have similar case?.
Our son has been diagnosed with a high grade astrocytoma (grade III or IV, the docs aren't sure, or at least they won't say). It has occurred in the same spot where he had cranial radiation for a medulloblastoma when he was 8, which was 26 years ago (he is now 34). The docs have been pretty open about saying that it is…
radiation necrosis
Could anyone tell me more about necrosis?? And about your experience with this??? They found another "spot" (1 inch ) in my husbands brain. The old tumor had reacted very well on both radiation and chemo. But now this new "spot" has been growing through the therapy, meaning that if it is a tumor it did not reacted at all…
Avastin Copayments
I have Blue Cross/Blue Shield and the four infusions of avastin that my wife took cost us 1840.00 dollars per infusion in co-payments. I'm glad it was there for her, it worked on everything but her cognititve impairment... But, I am scrambling to pay.. How does everyone else compare in the area of co-payments?
Anaplastic Oligodendroglioma Grade III
Has anyone had to go on 21 days of temodar? This is the second round for my husband and I whaven't read anywhere on this site anyone taking it for 21 days. They tell us now that he is doing 21 days, he will never go back to 5 days. They saw something on his last MRI that they said could be from the radiation he had (…

Brain Cancer

Discussion List

Discussion Boards