One patient with glioblastoma still alive nine years later
by Heather1218 on Fri May 11, 2007 12:00 AM
my father (age 64) was just diagnosed with multifocal glioblastoma multiforme. the use of avastin has been suggested along with radiation and chemotherapy (temodar.) i am interested in learning about patients' personal experiences with these combined therapies.
by Lmcg2007 on Fri May 11, 2007 12:00 AM
I am so sorry to hear about your dad. my Dad age 59 has one too. He did the radiation and temador and it worked for about a month Then they went for another MRI and it showed new growth. So they put him on CPT11 and Avastin They told my dad that there was gonna be major side affects and so far he hasnt had any. I know that the Avastin is suppose to stop the blood from gettn to the tumor which if it dosnt have any blood it doesnt grow! I hope this lil bit helps
by Ra1963 on Fri May 11, 2007 12:00 AM
On 5/11/2007 Heather1218 wrote:my father (age 64) was just diagnosed with multifocal glioblastoma multiforme. the use of avastin has been suggested along with radiation and chemotherapy (temodar.) i am interested in learning about patients' personal experiences with these combined therapies.thank you
Last September my father-in-law was diagnosed with GBM IV in the right occipital lobe of his brain. Treatments: Surgery to remove the whole right occipital lobe (which has left him without vision in the left side of each eye/his peripheral is bad on his left side); during surgery glidal wafers were placed in cavity; after some healing time from surgery, radiation along with chemo pills (Temodar); steroids, too; January MRI did not look good; 3 spots not far from surgery site; surgery not an option and doctor did not want to continue Temodar/radiation; then Avastin - Avastin is usually used for colorectal cancer and lung cancer but has also been used on patients with brain cancer with some promising results. (www.avastin.com - I'm sure your doctor knows of this) Now, some insurance companies do not pay for Avastin when used for brain cancer. Some insurance companies will pay for the initial treatment cycle, but if continued after about 6 weeks or more, the insurance may stop paying. These are expensive treatments. Don’t know what insurance carrier in-laws have. Do know that they also have a policy with Aflac (you know, the duck commercial!) My father-in-law has just completed treatment 5 (treatments are given every two weeks); very few side effects for him; he also has had another MRI since January - the 3 spots have reduced in size! Doctors want to continue the Avastin for as long as they can with follow up MRI's every 8 weeks.
Besides the surgery and treatments, he has made a list of good foods - fruits and veggies and has added lots of walking to his daily schedule (treadmill or outdoors). In February he did start drinking fruit juice (now, I'm not drinking it and I don't sell it!) - Xango; this is some fruit juice that a pyramid marketing company sells; it's made from mangosteen fruit from I don't know where, several countries can grow this fruit (from what I understand it is not related to the mango).
Anyway, this juice was his hope - his hope. I don't know if it did or did not help with the shrinking of the tumors but I don't really care at this point. All I know is his doctor's gave him Avastin and he had hope and we are very blessed to have the results we have today. With lots of prayers and positive thinking and tough attitude, he's putting up a great fight to beat cancer! And I pray that every cancer patient can do as well as he has done. I would love to think, too, that a fruit juice could cure our illnesses....time, money and research will have to prove that one to me.
The above was written a while ago. Father in-law’s side effects recently seem to have to do with the steroids he is on (Decadron?). The doctor has been trying to wean him off of this 2 or 3 times now and just when he gets near the end he becomes extremely fatigued and sleeps a lot and does not seem to have much strength in his legs. Doctor ends up upping the steroid dose again. Father-in-law is very puffed around face/neck/stomach.
A second MRI is scheduled at the end of this month with results on May 30….. Please keep posting your progress. I think this is an effective way to keep hope alive.
Peace to all
by Kehauhub on Fri May 11, 2007 12:00 AM
by Hotflash on Fri May 11, 2007 12:00 AM
by Karenjeff on Fri May 11, 2007 12:00 AM
I care for my 75yo mother with GIV GBM. I have read many posts about surgery/chemo/avastin etc. Have these patients got only one tumor, or have they been below a certain size? My mother has three tumors, a 6x 2cm, 2 x 3cm and a 3cm, in corpus callosum, right parieto-occipital and right hippocampus respectively. Surgery was not an option and they have directed her to palliative radiation (10days). She was not receptive to chemo and this was accepted by her doctors.
Despite being extremely fit and healthy two months ago, I am curious when reading about all the treatments people receive when diagnosed with GBM. Are we unfortunate because she is older, or are there too many tumors? It was my understanding that GBMs present usually as more than one tumor.
She is on 2 x 4mg steroid per day. Her leg weakness is really bad, she is only just getting around with a walking frame on wheels and I almost have to lift her up single steps or out of chairs, she is not putting in much power at all. I don't want to decrease steroids if this means losing her mind more. At least she understands things and can speak well, but her orientation is hopeless. She managed to get out of bed and find her way to the laundry and out the door to the back yard...looking for a toilet, when the toilet was right next to her bedroom with the light permanently on....I have just put in a bedroom comode...hope she thinks enough to use it.
Anyway would appreciate any comments re meds.
by Ra1963 on Wed May 30, 2007 12:00 AM
2nd MRI since starting Avastin/CPT-11 treatment - another great MRI.
He is now beginning Avastin only - not sure about this. Using Avastin in conjuction with chemo (CPT-11) worked so well, I'm concerned that Avastin may not be as effective alone....only time will tell. Have faith in doctors and prayer....
by cc104 on Tue Feb 04, 2014 11:27 PM
THank you for that positive message. My husband aged 58 is now on AVASTIN and is really making progress. He has had surgury and Chemo and radiotherapy,was on dexamethisone and now on avastin.
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