CancerCompass message board discussion started by jlg5095 on 6/26/2008 http://www.cancercompass.com/message-board/message/all,25450,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, I am new to cancer compass, I did not know where else to turn. My dad was dx with gbm IV a little over a year ago... he has been on all kinds of meds. , had 2 surgeries and can not have anymore radiation at this time.  The doctors said the next step is to choose between two types of chemo.. 1. Avastin + Irinotecan which is very lethal... or 2. etoposide (VP-16) does anyone have any input? Also is anyone beating this or know of someone who is? I am having a really hard time with this, as im sure everyone else is, so if anyone is willing to talk about this or provide any advice please reply!Hopefully someone can help, Jenna jlg5095 Thu, 26 Jun 2008 00:00:00 GMT Jenna,I believe there are many GBM survivors.  My husband, dx 8/07 with GBM IV is doing great.  He's got one of the most positive attitudes of anyone I know going through a life struggle, such as this.  He is currently taking Avastin/CPT-11 and is tolerating the infusions well.  His doctors also have him on Temodar in combination with these infusions on a 5/23 schedule.  So far, his MRI's look good.  Everything is currently stable.  I, like you, needed to hear about others fighting this disease, and winning.  I went to www.jerrykline.com  His story is worth your time reading.  He has other survivor stories you can read about, too.  Keep the faith, and know God is the ONE in control.  Many prayers are extended to you.................(((hugs)))KB1263 KB1263 Fri, 27 Jun 2008 00:00:00 GMT I've said it over and over and over again.  There are survivors of this disease - very long term survivors.  Anything over 3 years is considered long term, but I am talking about 12 years - 16 years and more.  It can be done.  There are no guarantees and each patient is different.  So much depends on the ability of the surgeon, how much was removed through surgery, the location of the tumor, the tolerability of the patient, over all health, age can also be a factor.  But it has been beaten many times by many people.  Do an internet search for brain tumor survivors and you'll find numerous stories of survival.I'm wondering where you heard that avastin with CPT-11 is lethal.  Most of the posts here will tell you that patients are doing well on it and it is tolerated over some other forms of treatment.  It has very promising results for a lot of patients.  Again, everyone is different, but left untreated this cancer will take your lofe.  You must be aggressive in treatment if you hope to beat a cancer that itself is very aggressive. Lorre G Fri, 27 Jun 2008 00:00:00 GMT Yes. There are those of us who are doing well. I celebrated 1 year of GBM iv survival on 6-6-08. I have had 2 craniotomies so far. I did the standard temodar and radiation for 6 weeks. After my counts crashed last sept the oncologist switched me to Avastin only. I am stable, no re growth. I will admit the neurodeficits have grown in so far as memory, coordination. I am less tolerent of idiots and inclined to tell them so. But that could also be due to the fact that I worked retail cust svc and management for 25 years and dealt with some real lulu's. ;) So far so good. I am not going down without a fight! texasbelle5 Fri, 27 Jun 2008 00:00:00 GMT I'm doing well, too. 6 months of Avastin and Ironotecan with almost no side effects. Clear MRIs since surgery last September. Why not give the ironotecan a try. You won't know how it affects your Dad until he tries. mbg53 Fri, 27 Jun 2008 00:00:00 GMT Thank you for your response. My fathers oncologist stated that avastin + CPT-11 could be fatal due to brain hemoraging and/or blood clots. Our choices are between avastin + CPT 11 or VP 16 which do you feel would be better and why? Also what do you think about VP-16, and which has better results? Jenna jlg5095 Fri, 27 Jun 2008 00:00:00 GMT If Avastin and CPT-11 are lethal, someone forgot to tell my husband!   He just had his 24th (and maybe final?) infusion on June 11.    They have to tell you all the worst case scenarios - just in case.  There are many people on this board who have been on the Avastin / CPT-11 combo and I haven't seen anyone say their loved one had a brain bleed from it.  I don't have ANY experience with VP-16 so I can't speak to that - sorry.  My husband is 15 months out from diagnosis and doing quite well.   He was diagnosed in April, 07 with inoperable GBM.   Radiation and Temodar did not work for him either.  In fact, his tumor progressed.So, don't give up hope.   Get another opinion and fight on.  My husband is being treated at Duke and they don't give up that easy.Good luck to you.Barb bpanc Fri, 27 Jun 2008 00:00:00 GMT HI,Don't lose hope.  My mum is 69 and one year on and is feeling well and had her 4th clear scan after surgery and treatment with radiotherapy and temozolide.  She had a right frontal GBM grade 4 with a poor prognosis!! prouddaughter Fri, 27 Jun 2008 00:00:00 GMT  On 6/26/2008 jlg5095 wrote:Hi, I am new to cancer compass, I did not know where else to turn. My dad was dx with gbm IV a little over a year ago... he has been on all kinds of meds. , had 2 surgeries and can not have anymore radiation at this time.  The doctors said the next step is to choose between two types of chemo.. 1. Avastin + Irinotecan which is very lethal... or 2. etoposide (VP-16) does anyone have any input? Also is anyone beating this or know of someone who is? I am having a really hard time with this, as im sure everyone else is, so if anyone is willing to talk about this or provide any advice please reply!Hopefully someone can help, Jennaif your Dad is 12 months out from dx he is beating the beast .  In fact even if he were 12 days out from dx he would have been a 12 day survivor!Keep the faith Jenna, gather as much information as you can.  I would recommend getting a second or even third opinion if you are unsure of his treatments and progress.   Information is your best tool at this point.I do know as I was dx one year ago today and am doing just fine.Had successful surgery July 6th 07, have not looked back since that day.Positive thoughts, actions and prayer are the strongest of medicines.Check out David M Bailey's site and I hope you will get a lesson, as I did, on survivorship.  He is 11 or 12 years out from dx, a brave young man and inspiration to us all.Prayers are with you and your Dad Jenna.Frances. Hi.. Frances2 Sat, 28 Jun 2008 00:00:00 GMT Jenna:The statistics are OLD; and they are gathered from patients who did not have the benefit of the newest treatments.  There are so many variables. One of the best web sites for information is www.virtualtrials.com   Read the article by Ben Williams, he is a long term survivor, and go to the other survivor stories. Learn as much as you can so that you can communicate and understand what the doctors are discussing.  My husband is a 4 year survivor. Diags in May 2004, had surgery, Temodar, radx, imrt radx, cpt 11 with avastin, bcnu with avastin, carboplatin with avastin.  He has a very good quality of life, although not working any more. He still drives, golfs, goes to the gym.   Good luck, www.caringbridge.org/visit/johnv  Luvingwife Sat, 28 Jun 2008 00:00:00 GMT Jenna-My friend is also surviving this-17 months so far and getting better.  He was diagnosed with an inoperable GBM in 2/07.  Did the Temodar and it aged him about 30 years.  Now he is doing infusions of Avastin/CPT11 every two weeks and the results are incredible!  His tumor has shrunk so much it looks like a slight haze (best description I can think of).  Before it was quite large and very opaque. Anyway, he has tolerated it quite well.  Nausea and some slight diarrhea but mostly fatigue.  His short term memory is pretty bad but some days are better than others.  I also notice he has lots of sinus trouble and his right eye peripheral vision is pretty bad but compared to the alternative, these are pretty minor side effects. I never listen to the statistics and always feed his mind with positive thoughts.  It's so important to focus on the positive and NEVER on the negative.  Don't let those thoughts take over.  Like Henry Ford said"whether you think you can or think you can't, you are right". Best of luck seeme Sat, 28 Jun 2008 00:00:00 GMT  On 6/28/2008 seeme wrote:Jenna-My friend is also surviving this-17 months so far and getting better.  He was diagnosed with an inoperable GBM in 2/07.  Did the Temodar and it aged him about 30 years.  Now he is doing infusions of Avastin/CPT11 every two weeks and the results are incredible!  His tumor has shrunk so much it looks like a slight haze (best description I can think of).  Before it was quite large and very opaque. Anyway, he has tolerated it quite well.  Nausea and some slight diarrhea but mostly fatigue.  His short term memory is pretty bad but some days are better than others.  I also notice he has lots of sinus trouble and his right eye peripheral vision is pretty bad but compared to the alternative, these are pretty minor side effects. I never listen to the statistics and always feed his mind with positive thoughts.  It's so important to focus on the positive and NEVER on the negative.  Don't let those thoughts take over.  Like Henry Ford said"whether you think you can or think you can't, you are right". Best of luck  Ask your Dad's neuro oncologist (and please tell me he is a neuro oncologist!) about Avastin only if he is afraid of the Avastin/CPT-11 combo. I realize everyone is different, but I have been on avastin only for 6 months. Tumors are stable and I am hanging in there. It's worth asking about. texasbelle5 Sat, 28 Jun 2008 00:00:00 GMT A lot of replies, but I just wanted to add one thing--about the chance of a brain bleed from Avastin.  Our neuro oncologist said it was about 2%.  Which is a lot lower than your chances with a brain tumor.  cozymel Sun, 29 Jun 2008 00:00:00 GMT Jenna My boyfriend is 16 mos. out from his diagnosis and doing fantastic.  A year ago we had to fight his insurance company in order for them to pay for the CPT-11 & Avastin.  He is now into his 24th treatment and there has been no sign of the tumor after two treatments.Keep the faith - as stated, they must tell you the worst case senario.  There are some people who cannot tolerate the treatment.  I does have fatigue for three days afterward and does have diarhea.  However, we have found if he takes Imodeom and believe it or not, yogurt (3 per day), the diarhea seems to have subsided.We believe in positive thinking - we make a joke of everything he does, and we use his son's dog as his companion - it all falls into place.  He has had a clean MRI since Dec., 2007 and his doctor can't believe the results.We don't ask how long he will be on this treatment - we wait it out and see.  We believe he will be around for me, his kids, and family for years to come.  You must think positive, take a positive attitude and be pro-active in treatment.Cathy Cathy31 Sun, 06 Jul 2008 00:00:00 GMT