On 5/4/2008
RubyG wrote:
On 4/28/2008
Sister-mar wrote:
Need feedback please. Brother dx 9/11/07 inoperable 4 cm. GBM IV, right frontal lobe, basal ganglia, some midline shift very near brainstem. he received the usual simultaneous Temador and radiation (EBRT) for 6 weeks and is now cycling the Temador 5/23. MRI's done Dec., Feb., and Apr. 7th have shown that his tumor has remained stable but he has steadily declined since Jan. with a major decline starting Apr. 14th. He is now bedridden, is not always in control of bowels, has had a urinary catheter since leaving hosp. left side of body, including vision wasting away.
I'm frustrated with his neuro-onc. at Indiana Univ. He always chooses to continue the cycling of Temador and nothing else since the tumor appears stable on the MRI. How about some more aggressive treatment I say. At this point my sister and I (making most of the decisions) are ready to quit the treatment and MRI's (he can barely get through one) and also veins are very hard to get into and esp. getting the contrast dye in: it takes 30 to 40 min. to find a vein that won't blow under the pressure of the thick dye insertion and he is not at all tolerant of pain. He's a screamer.
He's decided he still wants to fight even tho blood draws etc. are extremely hard for him. I wonder what can be done. I'm pretty much fed up with the 5/23 Tem. regimen.
I wonder if he is too weak to endure Avastin CPT-11 treatment of if our Dr. would do it. He has said in the past that he could use it off label without us having to go to a trial to get it. We've thought about getting him to another oncologist for 2nd opinion but would have to hire a medical transport as it is now impossible to transfer him from wheelchair to vehicle by any traditional means.
Dear Sister-mar
My husband was diagnosed on the 21st December 2007 with GBM stage 4, he is only 49 yo. My husband's tumor is situated on the left frontal lobe. He had a craniotomy on the 27th December 2007 and his neuro-surgeon only managed to remove 10% of the tumor at the most. Raymond lost his balance, bladder & bowel control. He was ble to walk with assistance but was very weak on the right side. This was devastating, to see my husband change from being such a fit person to being totally dependant on my children & I for everything. Life changed overnight, I havent yet accepted what has happened. His neuro-surgeon said that radiation is not an option and basically all he can do is to keep debulking the tumor. I then decided to take him for a second opinion - this neuro-surgeon said that Raymond's tumor is inoperable and would recommend 6 weeks of radiation followed by chemo. My husband ended up with intracranial pressure & had to be admitted into hospital, this delayed the radiation tretment as the oncologist refused to start the treatment process whilst my husband was so ill. He was treated with a double dosage of decadron iv, this immediately stopped the vomitting & in a weeks time was transfered to another hospital to begin his tretament as an inpatient. Raymond tolerated the radiation very well during the first four weeks, by the fifth week his muscles started to get very weak & he cannot walk but his speech & mentation has dramatically improved. The onco said that giving him chemo will make him very weak. It's 3 weeks now since his last radiation treatment & Raymond is now bedridden. We get a home physiotherapist everyday hoping that the therapy will help develop his muscles again but he is now complaining of severe pain on his legs & lower back, the oncologist prescribed MST for pain management. He is very sleepy & not very responsive. He has no head-aches, thank God for this. I dont know whether the muscle wastage is from the steroids (12 mg a day) or whether it is a side effect from the radiation. Raymond hasn't had a MRI after the treatment, his onco says that he should have one in July. The best time to see what the treatment has done is 3 months after radiation, 3 months is a long time when time is so precious with GBM. Does your brother complain of leg & back pain? Is he on sterids? Making decisions is the most difficult, I also feel like stopping all medication but am very scared to do so. I am praying & trusting God to perform a miracle, the doctors have basically given us no hope and the only hope that I have is the Lord Jesus. What is your brothers name? I will pray for him and that God will give you & your sister wisdom to make the right decisions. Keep doing the best that you can for your brother - I feel your pain, its not an easy journey seeing your loved go thru this. This is a monster disease, I never new how deadly brain tumors are until the day we got this horrible prognosis.
God bless, my thoughts & prayers are with you.
Dear Ruby G,
My brother's name is Bruce and we pray for Jesus to heal him everyday. He is 53 yrs. old. I agree that 3 nomths is a long time to wait to begin rounds of temodar. My borther's last radiation (temodar given simultaneously-160 mg. a day which is "gold standard" of treatment used for GBM) was Nov. 5, '07 then temodar cycles beginning 6 weeks later. He does complain of leg and back pain, and also pain all over. He had back trouble before this diagnosis and inactivity has only made it worse. He also is on 6mg. steroids/day.
Thanks for your reply.