CancerCompass message board discussion started by Drewty on 1/9/2006 http://www.cancercompass.com/message-board/message/all,3973,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband who is 41 was diagnosed 4 years ago with an inoperable brainstem astrocytoma grade2/3. Because it is "wrapped around the brain stem, surgery can not be done. He went through extensive radiation which shrank the tumor enough to get rid of his symptoms which were mostly dizziness and vision problems. He also was on Temodar for 18 months. Just this past October, symptoms again began and his growth was so minimal that the MRI was not catching it until his neuro-oncologist spead out all of his mris over the course of 4 yearsand caught the growth. It showed a small growth but enough to cause headaches and double vision. Mike has been on Temodar again since October. He takes 2 pills per day for 7 days, has a week off, then on again. Just Friday he had another MRi and the Temodar has not worked. Now this Friday, they are putting in a port and starting him on Camptosar (Cpt-11). Please, do any of you know anything about this or have known anyone who has used this? Mike will still continue the Temodar as well. Will he get really sick? I'm so scared and so afraid that if this doesn't work, we are running out of options. Our Neuro-oncologist Dr. Albright is wonderful but just doesn't say much. I know there are no guarantees or promises. I just need hope. Patty...I continue to think of you and your husband. What was the quote you told me awhile back? Don't let tomorrows worries ...something like that. I need some support. I'm a mess. Thank you. Kim Drewty Mon, 09 Jan 2006 00:00:00 GMT Hi Kim- I am so sorry to hear about your husband. I am new to this brain cancer stuff and been searching the net like a fiend. Someone gave me a FABULOUS site to look into. It is brainhospice.com. The person who wrote it is the daughter of a man who had GBM. This man was put on the CPT-11 that you mentioned in your note. From what the daughter wrote(look up the story of her dad--it is in that section), that med causes severe diarrhea. You could also try to google the full medication name and/or try other sites for info that aren't so medical/technical: braintrust.org national brain tumor foundation are 2 that may help. Keep the faith. God bless K my Dears Granddaughter Mon, 09 Jan 2006 00:00:00 GMT Kim, my wife (31) is a GBM patient currently on chemo. We are fortunate that her tumor was resectable, have participated in an IL13 clinical trial, radiation, and are on Temodar now and are tumor free at 8 months. We have extensively researched chemo combinations and expect to rotate from Temodar to Tarceva in another two weeks, then to the CPT-11/Avastin combination 12 weeks later. CPT-11 is a colon cancer drug that has been shown to have activity against malignant brain tumors. Common side effects are diahhrea which can be controlled with Immodium and low blood counts. It has a completely different cell kill mechanism than Temodar, inhibiting an enzyme called topoisomerase which cancer cells need to divide. Avastin is a type of drug called a VEGFR inhibitor, which prevents formation of the new blood vessels tumors need to sustain themselves. Clinical studies (just google the combination) have shown the combination of CPT-11 and Avastin has a higher patient response rate than either drug alone. Most people that we have known on CPT-11 have had a port installed. You have probably heard the term "heterogenous" in reference to brain tumors, meaning they are composed of different types of cells, some of which can survive and repair themselves from the damage done by chemotherapy. This means that the susceptible cells will die, leaving the cells that can repair themselves predominant, and rendering the previous drug ineffective. One thing you didn't mention is if your husband has had a recent biopsy to provide a recent tissue sample. There is a lot of genetic testing that can be done nowadays to help target which drugs might be successful for your husband, sparing him from a toxic treatment that might be less effective. You have to insist that this testing be done as it is not commonly offered, and the tissue samples might have to be sent off. There are a number of targeted drugs that attack these genetic mutations (Tarceva, Gleevac, Iressa...etc.) that would spare your husbands blood counts and could potentially be more effective. I would recommend you ask about combining CPT-11 and Avastin (keep in mind one of the possible side effects of Avastin is hemmhorage and internal bleeding - definitely not good in the brain stem) well as holding your doctors feet to the fire on the genetic testing (if they feel the potential benefits of the testing outweigh the risks of another biopsy). Good luck! Gagbm Tue, 10 Jan 2006 00:00:00 GMT Thank you so much for your response. It is so hard watching your loved one go through something like this and try to stay strong for your chilren, we have 2 boys ages 15 and 11, as well as stay strong for your spouse, the rest of your family and everyone you work with. I teach 3rd graders and even with them I must be "up" and energetic. Anyways, your info helped alot. Mike was never able to have a biopsy done. We were told that because of the location of the tumor...it's actually wrapped completely around his brain stem, that doing a biopsy would cause severe damage or death. Basically told that not a single doctor in the world would touch it. Therefore, they graded it based on it's size and I guess slow growth. How do you get through some days watching your wife suffer? It just breaks my heart. I find myself hiding in the shower just crying my eyes out so as not to frighten my boys and be strong. This is such a horrible disease. I'd appreciate any coping advice you might have as the spouse. God bless your wife too. Fondly, Kim Drewty Tue, 10 Jan 2006 00:00:00 GMT Hi Kim, I'm so sorry to hear about the rough time you are going through. I know exactly what you mean about isolating yourself so you can break down and cry. It is difficult to be the one who has to stay strong for everyone else, it can leave you feeling very alone....and scared. I have experienced these very same feelings many, many times. You might see if there are any support groups in your area or even look into finding a good counselor. It is nothing to be ashamed of or shy away from, we all need a little help sometimes. And I have found that an outside person can most times offer some good ideas on how to cope with all the rollercoaster emotions we have to deal with when it comes to this disease. I mean, look at you. You are trying to take care of your husband, your two kids, and work full time. It is a heavy load. I am in the same boat, so I know what you are going through. That little saying you were referring to went like this, "Don't let the worries of tomorrow rob you of your strength today." Quite simple really, but I try to refer to it everyday, I keep it on my fridge. I wish I could help you out on the medication question, but I am not familiar with it. I think the above post covered it really well. My husband is just finishing up this months Temodar and is feeling pretty lousy. Sometimes the treatment is worse than the disease! We go for his MRI on January 18th, and we are hoping for the best, as always. Please take care Kim, and try to hang in there. Keep us posted on how things are going. Fondly, Patty Marmie Tue, 10 Jan 2006 00:00:00 GMT kim & drewty... i really appreciate you guys and thanx sooooooooooo much for being people you are with the many hats you have to wear. i'm having a bad day myself, and i'm sittin here reading your post and i'm thinking all i have to do is be a pt. I relate well to the HCS (hidincryin syndrome. But it sure does help a bunch. (oh well, needed to insert my 2c.) Thanx a BUNCH Garland Tue, 10 Jan 2006 00:00:00 GMT I'm sorry to hear that you are having a bad day. And please don't feel bad for us as caregivers, believe me, what you are going through is really tough. I guess the bottom line is that we all appreciate what each other is going through, and all we can do is help each other along. I hope you get to feeling better, you are always an inspiration to hear from, I always watch for your posts. Take care, Fondly, Patty Marmie Tue, 10 Jan 2006 00:00:00 GMT I completely agree with Patty. You are going through so much too and like Patty said, having all of us here to support one another, no matter how our lives or others are affected by this, is such a comfort. I will keep all of you in my prayers believe me. You stay strong! We are all here to help you along and when we need support, someone will in turn be there for us. We just have to pull each other up. For me, simply finding another who is going through what Mike is experiencing or what I am experiencing is all I need. To not feel alone is the biggest comfort of all. Everyday in my third grade class ( I teach at a Catholic school) my students pray for Mike, my family, me, "and all those other people who are going through the feelings Mr. and Mrs. Williams are". What a comfort. Those little guys can bring a smile if but for a moment. And, as for those shower cries...they work, right? And it's okay. And you know what? My bad day just got a little better because you all reached out to me. God Bless You! We will stay strong! Love, Kim Drewty Tue, 10 Jan 2006 00:00:00 GMT Every room seems to be a shower room some days but its so good to know I'm not alone even if I am and that all of you yet so far away understand what each of us in tern is going through, you take time out to offer your support and advice and keep in touch with each other.. its priceless and I thank you for this. I love the quote Patty, my dear mother was famous for her quotes " Never put off till tomorrow what you can Say or Do Today" God Bless You All and thank you Astarte - UK Astarte Wed, 11 Jan 2006 00:00:00 GMT 25 I tell you not to worry about your life. Don't worry about having something to eat, drink, or wear. Isn't life more than food or clothing? 26 Look at the birds in the sky! They don't plant or harvest. They don't even store grain in barns. Yet your Father in heaven takes care of them. Aren't you worth more than birds? 27 Can worry make you live longer? Or "grow taller."28 Why worry about clothes? Look how the wild flowers grow. They don't work hard to make their clothes. But I tell you that Solomon with all his wealth wasn't as well clothed as one of them. 30 God gives such beauty to everything that grows in the fields, even though it is here today and thrown into a fire tomorrow. He will surely do even more for you! Why do you have such little faith? 31 Don't worry and ask yourselves, "Will we have anything to eat? Will we have anything to drink? Will we have any clothes to wear?" 32 Only people who don't know God are always worrying about such things. Your Father in heaven knows that you need all of these. 33 But more than anything else, put God's work first and do what he wants. Then the other things will be yours as well. 34 Don't worry about tomorrow. It will take care of itself. You have enough to worry about today. Matthew 6 Oncrx Wed, 11 Jan 2006 00:00:00 GMT i have had 3 rounds of C pTfor a recurrent astrocytoma pT 11. I Had no problems a lttle tired, but nothing more than that.It didn't work on me, so now I am on Tarceva. It seems to be working pretty well. I have not had problems with getting sick. I just get a bad facial rash. The rash is proof the medicine is working,so i am glad to see it when i break out.studies show thatr people breaking out ith the rash have better survival rates iwasfirst diagnosed in1993 with an anaplastic astrocytoma. they told me i had 2-5 years to live. i fooled them. i had 12 long wonderful years before it recurred. i plan on beating it again The Lord is my battle plan.I will keep you and your family in my prayers. Megmcin Fri, 03 Feb 2006 00:00:00 GMT Thank you so much for your note. I am SO happy that you have proved those doctors wrong! 12 years! WOW! The Lord is our best protector. My husband has done 2 rounds of the CPT-11 and last week they added Avastin to it. He continues to take Temodar as well. He's been very fatigued and nausiated but is still working which amazes everyone. He has a strong will. Like you, we were told five years ago to get our papers in line and make sure he had his will up to date. Can you believe that? Needless to say we never went to that doctor again. We love his neuro-oncologist now. He feels very strongly that with the Avastin included in the chemo, we could see some good results. After one round with the Avastin, his MRI yesterday showed no tumor growth.At least it hasn't grown any more since all this restarted in October. He will do two more rounds of CPT-11/Avastin and Temodar, then have another MRI in a month. We pray to have good news. I'm so glad the Tarceva is working with you! That gives me hope that we can't lose hope if this plan doesn't work.Where is your tumor located? I so appreciate hearing from you and I will keep you and your family in my prayers. God Bless You and stay strong! Fondly,Kim Drewty Sat, 04 Feb 2006 00:00:00 GMT