update on my mom with glioblastoma grade IV

mschaben · January 2004

My mom's tumor is very large again. She has been in the hospital since the 7th. She started to get stroke like symptoms again as well as being very weak. They admitted her and two days later she went into acoma. They did a Cat Scan and could see that she had massive brain swelling and alot of fluid building up pushing on the brain. They started her on IV steroids to try and reduce some of the swelling so she wasn't in so much pain and maybe she would wake up. She finally did. Then they did a MRI and found that her tumor has grown very large again. They gave her three options. One was to do surgery in Denver again. She does not want that. The doctors say with all the damage she has now plus the damage from another surgery she could possibly be a vegetable. She doesn't want that and neither do we. Second was to take the temodar by itself. The doctors say if the temodar even works it will only slow the growing process down and buy her a little more time. Third is to stay comfortable and let God take her when he is ready. She has chose to take the temodar knowing that it may not help. Last time she took it she was very ill with it. We all want the time she has left to be pain free and good times. She was to remain in the hospital until the end but has chosen to go home. She says if she is going to die she wants to be at home. The only problem with that is that she needs twenty-four hour care. She doesn't have enough strength to get up on her own. She will go home with a cathedar in. Does anyone have any idea if the temodar by itself will even help and if so how much more time would it buy her. I am not trying to be negative but I don't see how chemo by itself with help. She had surgery, radiation and chemo and the tumor still grew back during all that in seven months time. Any response will be appreciated. Thanks.

Mary

TAremote · January 2004

Mary,I know you are going through a hard time. I too have stage 4 Glio Blastoma, diag in July 2003. I had a resection, radiation, and chemo (Temadar). I will start my third treatment of temadar later this week. After the operation they said they removed 80% of the tumor, which is located next to the occipitial lobe ( vision). I have had very good results using temadar. My last MRI, Jan 2,2004 showed no new growth if the tumor. Like you Mom, I take many others meds, along with 8mg of Steriods to keep the swelling down. I was having headaches and dizziness when I would stand up. So far, I have not had any sideeffects from the temadar, but do take 3 anti nuasua meds so I don't get sick. Other than some vision, short term memory, and cognitive thinking issues I'm doing pretty good.
If I were you , I would go forward with the temadar, and ask your onocologist to help with anti nausau (sp) meds. My current temadar dosage is 5 days on and 23 days off. I take 4 - 100mg tablets at night before bedtime. I don't know if it is the temadar that is working, but, like I said, my last MRI didn't show any growth.

I hope for the best for your Mom and your family..
I hope this helps you. If I can help, please let me know.

God Bless
Tom
Taremote@aol.com

Malle · January 2004

TAremote said:
Mary,I know you are going through a hard time. I too have stage 4 Glio Blastoma, diag in July 2003. I had a resection, radiation, and chemo (Temadar). I will start my third treatment of temadar later this week. After the operation they said they removed 80% of the tumor, which is located next to the occipitial lobe ( vision). I have had very good results using temadar. My last MRI, Jan 2,2004 showed no new growth if the tumor. Like you Mom, I take many others meds, along with 8mg of Steriods to keep the swelling down. I was having headaches and dizziness when I would stand up. So far, I have not had any sideeffects from the temadar, but do take 3 anti nuasua meds so I don't get sick. Other than some vision, short term memory, and cognitive thinking issues I'm doing pretty good.
If I were you , I would go forward with the temadar, and ask your onocologist to help with anti nausau (sp) meds. My current temadar dosage is 5 days on and 23 days off. I take 4 - 100mg tablets at night before bedtime. I don't know if it is the temadar that is working, but, like I said, my last MRI didn't show any growth.

I hope for the best for your Mom and your family..
I hope this helps you. If I can help, please let me know.

God Bless
Tom
Taremote@aol.com

Hello, I am all new to this and I am writing you all the way from Sweden. My mom was diagnosed with Glioblastoma Multiforme stage 4 in february 2003. She was given 6 months to one year. In march she had surgery which went fine. This summer she had maximum radiation. Today there is a small new growth in the "old" tumor area which her doctor wants to "get" with Temodal (Temodar in english I guess). She has had one treatment so far and over all it went well. She is living alone at home and takes care of everything. She got ill (her white blood cells were down)a couple of weeks ago and had to spend 2 nights at the hospital. She hated it and demanded that they let her go home, which they did. It is the same thing everytime, as soon as she gets home she feels much better. I feel that we are blessed that she is feeling so well after what the doctor predicted in february 2003. We are not a big family but all of us are trying have positive thoughts all the time. The most positive one is my mother which is amazing! I really belive that positive thoughts helps you recover or delays the illness.
Well I just wanted to share my story with you and let you know that it helps a lot for me to read that there are people out there in similar situations.
I wish you all the best......and hope for the best both for the ones that are sick and family and friends around them.

Malena, Sweden

TAremote · January 2004

Malle said:
Hello, I am all new to this and I am writing you all the way from Sweden. My mom was diagnosed with Glioblastoma Multiforme stage 4 in february 2003. She was given 6 months to one year. In march she had surgery which went fine. This summer she had maximum radiation. Today there is a small new growth in the "old" tumor area which her doctor wants to "get" with Temodal (Temodar in english I guess). She has had one treatment so far and over all it went well. She is living alone at home and takes care of everything. She got ill (her white blood cells were down)a couple of weeks ago and had to spend 2 nights at the hospital. She hated it and demanded that they let her go home, which they did. It is the same thing everytime, as soon as she gets home she feels much better. I feel that we are blessed that she is feeling so well after what the doctor predicted in february 2003. We are not a big family but all of us are trying have positive thoughts all the time. The most positive one is my mother which is amazing! I really belive that positive thoughts helps you recover or delays the illness.
Well I just wanted to share my story with you and let you know that it helps a lot for me to read that there are people out there in similar situations.
I wish you all the best......and hope for the best both for the ones that are sick and family and friends around them.

Malena, Sweden

Malena. Glad to hear your Mom is doing as good as she is. I have the same thing she does. I was diag in July 2003, also been through the resection, 30 rad treatments, and chemo at the same time(temadar). I'm now doing chemo on 5 days off 23 days, 400 mg every night for the five nights. I have blood tests every Friday, which will keep a closer watch on my counts. So, far all is good there also..
I too am the most positive person in my family. I think it is harder on the caregivers, than on those of us that have the cancer. I was also given 4 months to live with no treatment, adn 12 months with treatment. But I'm here to tell you, those are only averages. I focus on my journey, and not the destination. Every day I pray HE give me strength, and to watch over my family and to keep them strong. And that if I'm to talk to someone today, that it be HIS words that come from my lips...

I'm truly blessed, and have been given this opportuniy to be a better person, and to help others where I can...

God Bless.
If I can help you or your Mom, please let me know.

Stay strong. And be there for each other
Tom

P.S. Please join us in the Chat room. Lots of good people, and support can be found there.

Malle · January 2004

TAremote said:
Malena. Glad to hear your Mom is doing as good as she is. I have the same thing she does. I was diag in July 2003, also been through the resection, 30 rad treatments, and chemo at the same time(temadar). I'm now doing chemo on 5 days off 23 days, 400 mg every night for the five nights. I have blood tests every Friday, which will keep a closer watch on my counts. So, far all is good there also..
I too am the most positive person in my family. I think it is harder on the caregivers, than on those of us that have the cancer. I was also given 4 months to live with no treatment, adn 12 months with treatment. But I'm here to tell you, those are only averages. I focus on my journey, and not the destination. Every day I pray HE give me strength, and to watch over my family and to keep them strong. And that if I'm to talk to someone today, that it be HIS words that come from my lips...

I'm truly blessed, and have been given this opportuniy to be a better person, and to help others where I can...

God Bless.
If I can help you or your Mom, please let me know.

Stay strong. And be there for each other
Tom

P.S. Please join us in the Chat room. Lots of good people, and support can be found there.

Hi Tom,

Thank you for your reply. I am so happy that I have found this forum where I can get more and more information about my mothters illness.
Although you are diagnosed with the same terrible illness as my mother you seem to be as positive as her. I think that it is very important (to have positive thoughts) coping with a serious illness as this. I think about those who do not have the energy to be positive........it must be so hard.

I am very thankful that I have found this site and all off you (the users).

Positive thoughts

Malena

Ps. I will try to join you in the chatroom one of these days Ds.

blzoe · January 2004

Hi, this is the first time I've ever been in a discussion board, so hope I'm doing this right.

I recently lost my Mom to glioblastoma multiforme. She put up a terrific fight, and lived just under a year after her diagnosis. She had surgery, radiation, and the Temodar. As far as whether to go forward with the Temodar, I feel that my Mom's doctors could not really say if the Temodar was helping, or if it was really the steroid that helped by keeping the edema down. It's so hard, trying to figure out what to do when the doctors give you confusing and conflicting information -- I don't say advice because, at least in our case, they wouldn't just say "I recommend you do such-and-such" -- we just had to take in all the information and try to make a decision ourselves. That's good and bad -- you want to take charge of your own health, but how do you understand all the stuff they throw at you?

Anyway, I just tried to take my cue from my Mom. She wanted to try the Temodar for a while, but when she took a dramatic turn for the worse after several treatments, she decided to discontinue it and go on Hospice. They are angels, by the way, the Hospice people. I could not have gotten through the last month of my Mom's illness without them.

I'm sorry, my post is not very upbeat, is it? I should tell you that we were able to have some good times, my Mom and I, before she became too ill. Do as much as your Mom feels like doing, and spend as much time with her as you can. My Mom and sister had been estranged for a couple of years before Mom's illness, and they came back together because of it. That, at least, was a positive -- it did them both so much good. So if there's anything like that in your family, I think it's good to try to mend fences. They didn't have much time to reaquaint, my Mom and sister, but what they had was really quality time, and I can't imagine what my sister would be going through now if they hadn't made up.

My thoughts will be with you. I do know what you are going through. Don't pass up a chance to hug her and tell her you love her. Lori

Malle · January 2004

blzoe said:
Hi, this is the first time I've ever been in a discussion board, so hope I'm doing this right.

I recently lost my Mom to glioblastoma multiforme. She put up a terrific fight, and lived just under a year after her diagnosis. She had surgery, radiation, and the Temodar. As far as whether to go forward with the Temodar, I feel that my Mom's doctors could not really say if the Temodar was helping, or if it was really the steroid that helped by keeping the edema down. It's so hard, trying to figure out what to do when the doctors give you confusing and conflicting information -- I don't say advice because, at least in our case, they wouldn't just say "I recommend you do such-and-such" -- we just had to take in all the information and try to make a decision ourselves. That's good and bad -- you want to take charge of your own health, but how do you understand all the stuff they throw at you?

Anyway, I just tried to take my cue from my Mom. She wanted to try the Temodar for a while, but when she took a dramatic turn for the worse after several treatments, she decided to discontinue it and go on Hospice. They are angels, by the way, the Hospice people. I could not have gotten through the last month of my Mom's illness without them.

I'm sorry, my post is not very upbeat, is it? I should tell you that we were able to have some good times, my Mom and I, before she became too ill. Do as much as your Mom feels like doing, and spend as much time with her as you can. My Mom and sister had been estranged for a couple of years before Mom's illness, and they came back together because of it. That, at least, was a positive -- it did them both so much good. So if there's anything like that in your family, I think it's good to try to mend fences. They didn't have much time to reaquaint, my Mom and sister, but what they had was really quality time, and I can't imagine what my sister would be going through now if they hadn't made up.

My thoughts will be with you. I do know what you are going through. Don't pass up a chance to hug her and tell her you love her. Lori

Hi Lori,

I get sad reading your story. Even though I am lucky to still have my mother, I understand what you went through and how you must feel. I to feel that I am not there enough for my mother, or that I should study more about the different treatments, but it is so hard to know what would be the best. My mother is now on temodar and have had one treatment and she is feeling well. I hope that you can get some support and mabye some answers to your questions here at acscsn. If there is anything I can do please let me know.

All the best to you and your family

Malena, 32

mschaben · January 2004

Hi everyone. I am sorry I haven't replied back for awhile. I just wanted to let everyone know that my mom is home right now. She has the hospital bed and everything set up at home and is taking the temodar. So far her spendown on her medical card is met. But only for 6 months. She is doing a little better since she is at home. She said if she is going to die she wants to be at home. But right now she is doing better. She is also back on steroids for the swelling. She will have a MRI in two weeks. Surgery is still not an option. I will try and keep you posted more often. I have two children that keep me very busy. Thank you for all your replies and support. It means alot.

Mary
My email is kountryliving26@yahoo.com

Malle · January 2004

mschaben said:
Hi everyone. I am sorry I haven't replied back for awhile. I just wanted to let everyone know that my mom is home right now. She has the hospital bed and everything set up at home and is taking the temodar. So far her spendown on her medical card is met. But only for 6 months. She is doing a little better since she is at home. She said if she is going to die she wants to be at home. But right now she is doing better. She is also back on steroids for the swelling. She will have a MRI in two weeks. Surgery is still not an option. I will try and keep you posted more often. I have two children that keep me very busy. Thank you for all your replies and support. It means alot.

Mary
My email is kountryliving26@yahoo.com

Hi Mary,

I am glad to hear that your mom is doing a little bit better. It seems like most of us feel better when we are home. Keep up the good faith. My thoughts are with you and your family.

My mother is doing fine at the moment. She is having some tests taken next wednesday to see where her "values" are. Hopefully everything is just fine. I will get back to you on this.

Lots of positive thoughts to all of you

Malena

jennajenjensue · February 2004

TAremote said:
Mary,I know you are going through a hard time. I too have stage 4 Glio Blastoma, diag in July 2003. I had a resection, radiation, and chemo (Temadar). I will start my third treatment of temadar later this week. After the operation they said they removed 80% of the tumor, which is located next to the occipitial lobe ( vision). I have had very good results using temadar. My last MRI, Jan 2,2004 showed no new growth if the tumor. Like you Mom, I take many others meds, along with 8mg of Steriods to keep the swelling down. I was having headaches and dizziness when I would stand up. So far, I have not had any sideeffects from the temadar, but do take 3 anti nuasua meds so I don't get sick. Other than some vision, short term memory, and cognitive thinking issues I'm doing pretty good.
If I were you , I would go forward with the temadar, and ask your onocologist to help with anti nausau (sp) meds. My current temadar dosage is 5 days on and 23 days off. I take 4 - 100mg tablets at night before bedtime. I don't know if it is the temadar that is working, but, like I said, my last MRI didn't show any growth.

I hope for the best for your Mom and your family..
I hope this helps you. If I can help, please let me know.

God Bless
Tom
Taremote@aol.com

My father was just diagnosed with gliablastoma multiforme Dec. 27 2003. He had surger Jan. 21 and they informed us that they were able to remove most of the tumor because it was a surface tumor. He starts radiation and chemo on the 9th of February. My dad has stayed very positive through every thing and doesn't want to talk to anyone who is negative and doesn't give him a chance to beat this. He is going to return to work tomorrow. Does anyone know if the initial radiation and chemo have a lot of side effects. His doctor told us that it doesn't, but sometimes I think that they tell you that so you won't reconsider taking the treatments. Any encouragement is helpful to me as I am not prepared to lose my father. Jennifer

nanc721 · February 2004

jennajenjensue said:
My father was just diagnosed with gliablastoma multiforme Dec. 27 2003. He had surger Jan. 21 and they informed us that they were able to remove most of the tumor because it was a surface tumor. He starts radiation and chemo on the 9th of February. My dad has stayed very positive through every thing and doesn't want to talk to anyone who is negative and doesn't give him a chance to beat this. He is going to return to work tomorrow. Does anyone know if the initial radiation and chemo have a lot of side effects. His doctor told us that it doesn't, but sometimes I think that they tell you that so you won't reconsider taking the treatments. Any encouragement is helpful to me as I am not prepared to lose my father. Jennifer

Jen, my 50 year old husband was diagnosed with GBM on Mother's day, 2003...he has had surgery, 8 weeks of radiation, concurrent with chemo (Temodar), and the plan is to continue with chemo for 2 years. He had an excellent surgeon, and after the operation, there was no sign of tumor, but we elected to take all the treatments anyway because of the aggressive nature of this cancer....anyway, he is doing VERY WELL....still works full time, and has some slight short term memory loss, but then, don't we all? He did have some hair fall out at the exit site of the radiation, but the hair has grown back now, and is fine. He tolerated the chemo beautifully, with a wonderful antinausea drug called Zofran. He, too, is very positive, and that is SO important, so make sure you stay positive, too....He needs to know that you believe in him, and that he is strong enough to fight this thing. None of us ever know how this will turn out, but we have the added bonus of being able to tell our loved ones just what they mean to us, so take this opportunity to do just that. Good luck to all of you, and please believe me when I tell you that the treatments really aren't all that bad. Hubby feels bad that they weren't worse....says he doesnt feel like he deserves to have anyone feel sorry for him because this has been so easy.....so support Dad in whatever he decides...he HAS to be the boss in this...

jennajenjensue · February 2004

nanc721 said:
Jen, my 50 year old husband was diagnosed with GBM on Mother's day, 2003...he has had surgery, 8 weeks of radiation, concurrent with chemo (Temodar), and the plan is to continue with chemo for 2 years. He had an excellent surgeon, and after the operation, there was no sign of tumor, but we elected to take all the treatments anyway because of the aggressive nature of this cancer....anyway, he is doing VERY WELL....still works full time, and has some slight short term memory loss, but then, don't we all? He did have some hair fall out at the exit site of the radiation, but the hair has grown back now, and is fine. He tolerated the chemo beautifully, with a wonderful antinausea drug called Zofran. He, too, is very positive, and that is SO important, so make sure you stay positive, too....He needs to know that you believe in him, and that he is strong enough to fight this thing. None of us ever know how this will turn out, but we have the added bonus of being able to tell our loved ones just what they mean to us, so take this opportunity to do just that. Good luck to all of you, and please believe me when I tell you that the treatments really aren't all that bad. Hubby feels bad that they weren't worse....says he doesnt feel like he deserves to have anyone feel sorry for him because this has been so easy.....so support Dad in whatever he decides...he HAS to be the boss in this...

thank you so much for your reply and encouragement. That is exactly what I needed to hear and I will also let my Dad know what you said and ask the doctor about the anti-nausea drug. Maybe that will help him. He really really wants to go back to work full time. He doesn't want to lose any of his independence. I pray your hubby continues to do well. Please keep me updated.

heller31 · February 2004

My mom was diagnosed with glioblastoma on July 30, 2003 and had emergency surgery the following morning. She did chemo and temodar. For the last 3 months she has been feeling great, we even just went on a cruise with the entire family and she had a blast. She took the temodar very well. Along with anti-nausia meds it rarely affected her every day routine. Unfortuanitly, we went to the doctor last week and learned the temodar did not affect the tumor and it has grown a substantial amount. However, i feel it is better to give it a shot, ESPECIALLY if it has little side affects. What doesn't work for one person doesn't mean it will not work for the next so I suggest going ahead with the temodar.

I wish you and your mother the best and will keep you guys in my prayers.

Melissa

jbenglish1 · February 2004

mschaben,

I was diagnosed with a mixed glioma (oliodendraglioma and astocytoma) in 1999. I was given radiation and chemo therpy to which I responded very well. In June of 2002 the tomor began to grow back. My oncologist prescribed temedor to treat the reoccuring tumor. I am happy to say that at this point I am cancer free. I will be taking temdor until June of 2004 and at that point the treatment will cease. Obviously this isn't the same type of cancer, but it eliminated my tumor very quickly. If you want to know more please respond.

Thanks,
jbenglish1

DCovington · February 2004

jbenglish1 said:
mschaben,

I was diagnosed with a mixed glioma (oliodendraglioma and astocytoma) in 1999. I was given radiation and chemo therpy to which I responded very well. In June of 2002 the tomor began to grow back. My oncologist prescribed temedor to treat the reoccuring tumor. I am happy to say that at this point I am cancer free. I will be taking temdor until June of 2004 and at that point the treatment will cease. Obviously this isn't the same type of cancer, but it eliminated my tumor very quickly. If you want to know more please respond.

Thanks,
jbenglish1

This my first time to try this. I hope your mother will get better. I had this 5 years ago and went through surgery,radiation,and chemo. I am still doing things for the Cancer Group here and still take some different kinds of medicine. So I will stop and pray for you Mother to get well again.

lltitus · March 2004

jbenglish1 said:
mschaben,

I was diagnosed with a mixed glioma (oliodendraglioma and astocytoma) in 1999. I was given radiation and chemo therpy to which I responded very well. In June of 2002 the tomor began to grow back. My oncologist prescribed temedor to treat the reoccuring tumor. I am happy to say that at this point I am cancer free. I will be taking temdor until June of 2004 and at that point the treatment will cease. Obviously this isn't the same type of cancer, but it eliminated my tumor very quickly. If you want to know more please respond.

Thanks,
jbenglish1

jbenglish1,
I have the same as U(mixed glioma)in my right frontal lobe. I was Dx in May 2003, had total removal from surgery. Now I am in a clinical trial doing 6 cycles of temodar, 6 cycles of PCV, more temodar and then radiation this coming fall.Do U have any side effects? I feel my mind is so foggy, its hard to pull answers out.My Dr. has not talked about prognosis, but I heard the tumor grows back 3-6 years later more aggressively. I'm glad your tumor is eliminated.
Where was it located?
Thank U, Linda

Unknown · October 2009

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update on my mom with glioblastoma grade IV

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