CancerCompass message board discussion started by Sister-mar on 4/28/2008 http://www.cancercompass.com/message-board/message/all,23500,0.htm Mon, 01 Dec 2008 00:00:00 GMT Mon, 01 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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.    Sister-mar Mon, 28 Apr 2008 00:00:00 GMT I would definitely look for a second opinion.  Don't wasted time second guessing your onc.  If you have doubts about the treatment plan, they are probably well founded.  Follow your gut instinct!  I hope this doesn't sound cruel, but it doesn't sound like your poor brother has much to lose by trying another path.  There are other choices out there for treatment.  You can do a lot of research online about different treatment options, and many doctors will do what is called a file review without even seeing the patient.  The doctor can look at the records and decide if he/she thinks they can be of some benefit beforehand.  This will be a lot less wear and tear on your brother.Best wishes!Jackiekay jackiekay Mon, 28 Apr 2008 00:00:00 GMT You are saying that his tumor is stabilized and I am assuming that is why they keep him on Temodar because it seems to work on him. Once a medication does not work, the tumor will start growing and then they will stop it. Actually, Temodar is considered to be aggressive treatment, being a chemotherapy drug. With all the choices we have in this country, take your brother to a 2nd, 3rd opinion and go with what makes sense to you and your family. The question is what is the best line of treatment for your brother? After my fathers regrowth I asked the doctor about Avastin and he simply said, that drug is not recommended for your father, period.Do not stop at one doctor,they are so defferent. Best of health and luck to you.Joe Chiroman95 Tue, 29 Apr 2008 00:00:00 GMT My husband (45 yo) was diagnosed with GBM in august 2007 and had a surgery to remove 90% of the tumor. He was on temodar for 4 months with stable MRI but he was feeling bad. After the first 2 months, the MRI showed that the tumor did not change in size.  I asked the doc what is the point in continueing  with temodar if it doen't help. The doc said that if the tumor doen't grow it is ok. But my husband felt so bad - he was confused, dissoriented, weak, and halucinated. After the second MRI, that was stable with a slight growth, I insist on swiching to avastin. So 2 months ago he started avastin & cp11 and within a week he start feeling better. Now he feels great, his energies and memory are back, he doesn't suffer any side effects, he is able to enjoy life. Last week MRI show a dramatic shrinkage and that explains the dramatic improvemant in his health. So stable MRI is good news but for my husband only when the tumor shrank he start living again. I know each person is different and I know Avasin is not going to work forever but at least my husband get to enjoy life a bit instead of suffering in bed. I hope your husband will get a chance to try Avastin and I hope it will work for him. I also worried about the side effect of Avastin but I knew that staying on Temodar he'll just get worse and worse till the end. Eventually it turned out that he tollerated Avastin better than the Temodar.I hope it helps, Ariel Arie08l Tue, 29 Apr 2008 00:00:00 GMT Hi there,The same thing happend to my dad. His tumor was stable, even shrinking. But he was declining fast. He was bedridden and weak.He was also on 5/23 temador and decadron. But it was the side effects of these drugs that caused my dad to decline like that. Eventually, we had to stop all medication because of his declining condition even though his tumor was shrinking.I would advise talking to another doctor and try to find out why he is declining. Maybe medication needs to be changed or maybe he just needs a break from all the medication.Ranju Ranju Tue, 29 Apr 2008 00:00:00 GMT My Dad, age 69, is in a similar situation. He was dx 7/07, had surgery, radiation and Temadar and is now on his 5th month of Temadar 5/23. The MRI following his 6 weeks of radiation showed that his tumor had grown back to be a bit larger than the original size and another region appeared as well. The 5 months of Temadar has kept the tumor(s) at a stable size and the doctors seem happy with that,but I am not! Although the tumor is stable, Dad is getting much weaker and losing weight. He fell 3 times in a week, hurting his leg and cracking his ribs, so now he's in a wheelchair.I think the doctor should be more aggressive, but he does not want to start Dad on Avastin unless he sees the tumor grow. He also said that Dad will steadily decline and die whether or not the tumor grows. He told me that I need to accept that this disease is fatal, and that Avastin is not a cure, but will just prolong his suffering. I am not comfortable with this, but Dad is refusing to travel to Duke or anywhere outside of an hour from home. There are no trials available to him in his home area (South Florida).  I think Dad is giving up and just wants to die in peace at home. It's very painful and upsetting because I am a fighter and I don't want to let him go. If it were up to me, I would go to Duke and fight it out, but Dad and his doctor seem content to let go. susanbs Thu, 01 May 2008 00:00:00 GMT  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-marMy 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.   RubyG Sun, 04 May 2008 00:00:00 GMT  On 4/29/2008 Ranju wrote:Hi there,The same thing happend to my dad. His tumor was stable, even shrinking. But he was declining fast. He was bedridden and weak.He was also on 5/23 temador and decadron. But it was the side effects of these drugs that caused my dad to decline like that. Eventually, we had to stop all medication because of his declining condition even though his tumor was shrinking.I would advise talking to another doctor and try to find out why he is declining. Maybe medication needs to be changed or maybe he just needs a break from all the medication.RanjuDear RanjuDid you stop all your dads medication?  My husband has muscle wastage & is bedridden, he was was on 16 mg of decadron whilst in hospital which stopped after a few weeks & they started him on 8mg of steroids 3 times a day. He is now on 4 mg 3 times a day.  I feel that the steroids is causing the muscle weakness & wastage.  The doctors is not very helpful, I am scared to wean him off the steroids.  Please can you help or offer some advice??? RubyG Sun, 04 May 2008 00:00:00 GMT  On 5/4/2008 RubyG wrote: On 4/29/2008 Ranju wrote:Hi there,The same thing happend to my dad. His tumor was stable, even shrinking. But he was declining fast. He was bedridden and weak.He was also on 5/23 temador and decadron. But it was the side effects of these drugs that caused my dad to decline like that. Eventually, we had to stop all medication because of his declining condition even though his tumor was shrinking.I would advise talking to another doctor and try to find out why he is declining. Maybe medication needs to be changed or maybe he just needs a break from all the medication.RanjuDear RanjuDid you stop all your dads medication?  My husband has muscle wastage & is bedridden, he was was on 16 mg of decadron whilst in hospital which stopped after a few weeks & they started him on 8mg of steroids 3 times a day. He is now on 4 mg 3 times a day.  I feel that the steroids is causing the muscle weakness & wastage.  The doctors is not very helpful, I am scared to wean him off the steroids.  Please can you help or offer some advice???Our hospice nurses have attributed the muscle wasting to steroids.  My brother's major decline began a few days after raising the decadron from 2 mg./a.m., 4 mg./p.m total 6mg./day to 12mg./day. I was supposed to check back w. onc. after raising Decadron to let him know if it helped his deficits but Dr. was at a week long conference.  i eventually cut back the decadron to original dose with no additional problems.     Don't know if I'll be able to get him to a 2nd opinion as he currently can only travel by ambulance on a gurney, too difficult to get him into a wheelchair.  Sister-mar Tue, 06 May 2008 00:00:00 GMT  On 4/29/2008 Arie08l wrote:My husband (45 yo) was diagnosed with GBM in august 2007 and had a surgery to remove 90% of the tumor. He was on temodar for 4 months with stable MRI but he was feeling bad. After the first 2 months, the MRI showed that the tumor did not change in size.  I asked the doc what is the point in continueing  with temodar if it doen't help. The doc said that if the tumor doen't grow it is ok. But my husband felt so bad - he was confused, dissoriented, weak, and halucinated. After the second MRI, that was stable with a slight growth, I insist on swiching to avastin. So 2 months ago he started avastin & cp11 and within a week he start feeling better. Now he feels great, his energies and memory are back, he doesn't suffer any side effects, he is able to enjoy life. Last week MRI show a dramatic shrinkage and that explains the dramatic improvemant in his health. So stable MRI is good news but for my husband only when the tumor shrank he start living again. I know each person is different and I know Avasin is not going to work forever but at least my husband get to enjoy life a bit instead of suffering in bed. I hope your husband will get a chance to try Avastin and I hope it will work for him. I also worried about the side effect of Avastin but I knew that staying on Temodar he'll just get worse and worse till the end. Eventually it turned out that he tollerated Avastin better than the Temodar.I hope it helps, ArielYour situation sounds very similar to ours, except that beyond the biopsy there was no removal and he has not hallucinated.  I am so very curious if the Temodar is what's causing many of his deficits.  Unfortunately, there is no way of knowing how our loved one is going to respond.  Tomorrow we go for MRI and onc. appointment at which time I'm sure some kind of decision will be made.  Thanks for your response, Ariel. Marilyn Sister-mar Tue, 06 May 2008 00:00:00 GMT  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-marMy 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.  Sister-mar Tue, 06 May 2008 00:00:00 GMT