Brain cancer(Glioblastoma grade 4)

mschaben
mschaben Member Posts: 87
edited December 2022 in Brain Cancer #1
My mother was diagnosed with a brain tumor in June. Two days after her diagnoses she had brain surgery. They removed it in pieces. It was the size of the bottom of a 32oz. cup. They didn't get it all. She came out of sugery well. She does have some side effects of the tumor. Her memory and thought process isn't the same. She underwent seven weeks of radiation and chemo by IV every eight weeks. Then just last month the MRI showed that the tumor was already growing back. They put her on a high dose chemo pill called temodar. Just had another MRI two days ago and shows that the pill has helped shrink the tumor or slow it down. The worst part is she will have to continue the chemo pill five days on and twenty-eight days off. This treatment along with the cancer itself is making her very very tired. The doctors all say that it is normal considering all the circumstances. The most frustrating thing is that the cancer will always grow back. If anyone else can relate to this in anyway please feel free to respond back. Thanks.

Mary
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Comments

  • TAremote
    TAremote Member Posts: 56 Member
    Yes,I can relate to your situation. I too have Glioblastoma, mine is stage 4, and is located on the occipital lobe which controls your vision. I had my operation on Aug 21st, where they got 80% of the tumor. I completed 6 weeks of radiation along with chemo during the same time frame. My Chemo was also tmeador. My first MRI after treatment showed the tumor had not grown that much. I go back next week for another MRI and floowup visits with the Onocologist, and Neurosurgeon. From those visits we will set another treatment plan. This type of cancer is a hard one to get rid of, but remember that everything the Doc's tell you are just averages. Many people have beaten this cancer. Keep looking for new treatment, and let your Onocoligist know about what you find. There are many trials out there that might help.
    Keep the faith, and God bless you and your family. If I can help, please let me know

    Tom
  • MsDenise
    MsDenise Member Posts: 3
    On January 7th, my mom will turn 69, like your mother, she also has GBM Grade IV. She just celebrated her 5th year of life following her first craniotomy. My mom still lives alone and is very independent, although she can not drive any longer. She had her 1st craniotomy 11/97 followed by 6 weeks of radiation. Then we went to UCSF where she had the gamma knife treatment. She had her 2nd craniotomy 3/03. In May we went back to UCSF for another consult. They decided to put her on Temodar late May. She just finished her 7th round of Temodar and is doing great. According to oncology, she will be going off the Temodar within the next month. My mother has done terrific on the chemo drug. She is still living on her own and taking care of herself without any outside assistance. Her doctor's do not know if it's the Temodar or her great outlook on life and her positiveness that keeps her going. Please tell you mom to have faith and don't EVER give up, I truly believe this is why my mother has made it over 5 years now! Good luck and best wishes to you and your family. Denise
  • perryland
    perryland Member Posts: 2
    Well my husband just found out he has the same thing.I'll be praying for you.I don't know alot about it,but the doctors said it was'nt good,and he has brain cancer.
  • TAremote
    TAremote Member Posts: 56 Member
    perryland said:

    Well my husband just found out he has the same thing.I'll be praying for you.I don't know alot about it,but the doctors said it was'nt good,and he has brain cancer.

    Parryland, What is the latest on your husband?? Where in the brain is his tumor? I also have stage 4 GBM, diag last July 2003. Don't give up hope, and don't stop trying...

    God Bless
    Tom
  • bradheath
    bradheath Member Posts: 4
    TAremote said:

    Parryland, What is the latest on your husband?? Where in the brain is his tumor? I also have stage 4 GBM, diag last July 2003. Don't give up hope, and don't stop trying...

    God Bless
    Tom

    Hi
    about 11 months ago I had a sisure the glioblastoma multiform tumor 4th grade got to me, had a brain opperation, then radeation & timidor every month now and the timidor sometimes stops working after a yr, thats why the drs. want to change it. untill then I didn't know I had anything wrong (in one split secound your whole live changes). Now I live for today and get enjoyment out of each and every day, becouse as they say - God never prommesed you tomorrow.. good luck Brad Heath
  • glovrin
    glovrin Member Posts: 1
    bradheath said:

    Hi
    about 11 months ago I had a sisure the glioblastoma multiform tumor 4th grade got to me, had a brain opperation, then radeation & timidor every month now and the timidor sometimes stops working after a yr, thats why the drs. want to change it. untill then I didn't know I had anything wrong (in one split secound your whole live changes). Now I live for today and get enjoyment out of each and every day, becouse as they say - God never prommesed you tomorrow.. good luck Brad Heath

    Hi, my sister was dx with GBM, April 29, 2004. On May 10 she was to start her radiation treatment and Temador, she took her temador at 11:00 am and before she could get to her radiation trt at 1:30 she had a seizure on the way to the hospital, so ended in urgent care and was admitted to the hospital, once it was under control, they did start the radiation trt the next day, they doubled the dose and did it in 3 weeks instead of 6. After a week in the hospital they moved her to a SNF where she is still, getting occupital thereapy, and making slow progress since the completion of the radiation therapy. I think our goal for her now is to regain some functions, so she could come home. They are having a hard time getting her meds at the right level it seems. She now has lost on the hair in the front of her head, so she had the rest shaved off. She is having a hard time swallowing, slowly get back to regular foods, but still does not want to, or can't swallow her meds. She is on Dilantin, and deacdron, antibotics for a UTI. Her speech and motor skills have been affected. Anyone with similar situation? What can we expect? Will she regain these functions? Thanks Gail
  • katydid74
    katydid74 Member Posts: 3
    TAremote said:

    Parryland, What is the latest on your husband?? Where in the brain is his tumor? I also have stage 4 GBM, diag last July 2003. Don't give up hope, and don't stop trying...

    God Bless
    Tom

    Dear TAremote,
    My husband was diag with GBM Gr IV, on 5/3. He is 47. The tumor was located in the left temporal lobe and was completely removed. He began radiation treatments on 6/1/04 coupled with daily doses of Temodar, for 6 weeks (radiation and temodar combined/weekends off). So far, so good. How is everything with you?
    Good luck to you.
  • faith50
    faith50 Member Posts: 1
    glovrin said:

    Hi, my sister was dx with GBM, April 29, 2004. On May 10 she was to start her radiation treatment and Temador, she took her temador at 11:00 am and before she could get to her radiation trt at 1:30 she had a seizure on the way to the hospital, so ended in urgent care and was admitted to the hospital, once it was under control, they did start the radiation trt the next day, they doubled the dose and did it in 3 weeks instead of 6. After a week in the hospital they moved her to a SNF where she is still, getting occupital thereapy, and making slow progress since the completion of the radiation therapy. I think our goal for her now is to regain some functions, so she could come home. They are having a hard time getting her meds at the right level it seems. She now has lost on the hair in the front of her head, so she had the rest shaved off. She is having a hard time swallowing, slowly get back to regular foods, but still does not want to, or can't swallow her meds. She is on Dilantin, and deacdron, antibotics for a UTI. Her speech and motor skills have been affected. Anyone with similar situation? What can we expect? Will she regain these functions? Thanks Gail

    Don't do well w this computer stuff... my mom was dx w possible brain tumor on June 1 2004 same day ct and mri confirmed tumor surgury June 5 2004 got most of it, Path report back June 9 Malignant,GBM grade 4 no cure. Wow that was an awful week. Mom has been trhu 4 weeks radiation (5 days a wk) Temodar 7 days wk. Very tired and weak. HAs trouble w word finding. Knows what she wants to say but cant find right word. Numbers hard to recognize, can't read well, no longer allowed to drive. Require 24 hr care do to confusion. Also very grumpy from steroids I think. Has much faith in God. In good spirits. She is a strong lady. She is 50 and has 7 wonderful grandkids. I will keep you all in my prayers. Remember...God has a plan and we only know a piece of it. He doesn't give us more than we can handle. I know that everything will be ok no matter what happens...God can take the cancer away or he can my mom. Either way my mom is going to be ok! I believe that!
    God Bless
    Sherri
  • melansoa
    melansoa Member Posts: 1
    I just found out today that my 19 year old nefiew has a glioblastoma grade 4 as well. We are all devastated. He started off with a seizure a couple of weeks ago. MRI showed a mass and he had surgery last week to remove it. It was encapsulated and they felt they removed it all, so we of course were all very hopeful. Unfortunately the biopsy result came back today and he was told that it is the worst type of tuour to have. He will soon be starting chemoo and radiation. The hardest thing about all of this is that I am a healthcare professional and I don't know what to say to help support my family members. I mean I do it all the time at work, but this seems different now. I feel that whatever I will say will not be enough to comfort them. This really sucks. The literature says that at a young age (less than 40 yrs) the is a 50% chance that survivale will be greater than 18 months. I just can't imagine living each day wondering when death will occur. How are you guys coping and dealing with all of this?
    God bless you all.
    Annette
  • This comment has been removed by the Moderator
  • mpochaw
    mpochaw Member Posts: 1
    TAremote said:

    Yes,I can relate to your situation. I too have Glioblastoma, mine is stage 4, and is located on the occipital lobe which controls your vision. I had my operation on Aug 21st, where they got 80% of the tumor. I completed 6 weeks of radiation along with chemo during the same time frame. My Chemo was also tmeador. My first MRI after treatment showed the tumor had not grown that much. I go back next week for another MRI and floowup visits with the Onocologist, and Neurosurgeon. From those visits we will set another treatment plan. This type of cancer is a hard one to get rid of, but remember that everything the Doc's tell you are just averages. Many people have beaten this cancer. Keep looking for new treatment, and let your Onocoligist know about what you find. There are many trials out there that might help.
    Keep the faith, and God bless you and your family. If I can help, please let me know

    Tom

    Thank you and good luck to you
    My cousin, was recently diagnosed with the same and is going through radiation and chemo. The doctors said it was inoperable. All the stuff I've been reading up have been very discouraging. Thank you for your words of encouragement.
  • JulieLinehan
    JulieLinehan Member Posts: 1
    TAremote said:

    Parryland, What is the latest on your husband?? Where in the brain is his tumor? I also have stage 4 GBM, diag last July 2003. Don't give up hope, and don't stop trying...

    God Bless
    Tom

    How are you?
    Hi Tom,

    I was just Googling Grade 4 glioblastoma and I came across your postings here. So encouraging! How are you doing? How has the process been for you? My mom was just diagnosed with the same thing.

    Julie Linehan
  • stayingcalm
    stayingcalm Member Posts: 650 Member

    How are you?
    Hi Tom,

    I was just Googling Grade 4 glioblastoma and I came across your postings here. So encouraging! How are you doing? How has the process been for you? My mom was just diagnosed with the same thing.

    Julie Linehan

    I hope he will answer, but -
    JulieLinehan,
    I suggest you check the dates on threads, it will save you disappointment if no one answers - and I don't mean this in a bad way. People get better and move on, and forget to check back on old threads, etc.
    stayingcalm
  • mardee
    mardee Member Posts: 2
    TAremote said:

    Yes,I can relate to your situation. I too have Glioblastoma, mine is stage 4, and is located on the occipital lobe which controls your vision. I had my operation on Aug 21st, where they got 80% of the tumor. I completed 6 weeks of radiation along with chemo during the same time frame. My Chemo was also tmeador. My first MRI after treatment showed the tumor had not grown that much. I go back next week for another MRI and floowup visits with the Onocologist, and Neurosurgeon. From those visits we will set another treatment plan. This type of cancer is a hard one to get rid of, but remember that everything the Doc's tell you are just averages. Many people have beaten this cancer. Keep looking for new treatment, and let your Onocoligist know about what you find. There are many trials out there that might help.
    Keep the faith, and God bless you and your family. If I can help, please let me know

    Tom

    how are you doing
    I was just recently dx with a GBM in the left occipital lobe.I had surgery to remove it. Will be starting treatment soon. I am wondering how you are doing at this time, if you've had any recurrence? Have you had success with any other treatments?
    Bob
  • anaid
    anaid Member Posts: 1
    my dad just had a tumor
    my dad just had a tumor removed from his left temporal lobe fortunitly it didnt effect his speech like the surgen thought it would. It was 3cm and he's on stage four the doctor was able to remove all of it but he is still starting chemo and radiation. my family and i are thankful he still with us but i would like some opinions on how to help my dad go through these treatments. if anyone can relate to this please feel free to respond back we can use all the help we can get so we dont go into this so blindly.

    diana
  • momsworld
    momsworld Member Posts: 135
    melansoa said:

    I just found out today that my 19 year old nefiew has a glioblastoma grade 4 as well. We are all devastated. He started off with a seizure a couple of weeks ago. MRI showed a mass and he had surgery last week to remove it. It was encapsulated and they felt they removed it all, so we of course were all very hopeful. Unfortunately the biopsy result came back today and he was told that it is the worst type of tuour to have. He will soon be starting chemoo and radiation. The hardest thing about all of this is that I am a healthcare professional and I don't know what to say to help support my family members. I mean I do it all the time at work, but this seems different now. I feel that whatever I will say will not be enough to comfort them. This really sucks. The literature says that at a young age (less than 40 yrs) the is a 50% chance that survivale will be greater than 18 months. I just can't imagine living each day wondering when death will occur. How are you guys coping and dealing with all of this?
    God bless you all.
    Annette

    hi there Annette
    My daughter has AA3 brain cancer, alittle different than GBM4,but still a high grade brain cancer. Dealing with the 'not knowing' part is hard. My daughter was diagnosed in March 2010 and it has been a up hill battle ever since. I cried everyday for almost a year and now I am just sort of numb. People tell me to enjoy every minute with her(which I do do), and to be positive but, it can be so hard to be positive all the time. Sometimes I feel that time is slipping away and that everyday brings us closer to the end. I continue to pray for God to take care of her. I know he will, I'm not sure if it will be here or in heaven though. My daughter is 13yrs old and she hasn't had a chance to experience things in life yet, like her first kiss, drivers license, etc. If I could take her cancer away and give it to myself, I would. This is the hardest thing that we have ever had to go through and it is not over yet. Please keep in touch and let me know how your son is doing.
    I will pray for your son.
  • sweetokielady72
    sweetokielady72 Member Posts: 3 Member
    momsworld said:

    hi there Annette
    My daughter has AA3 brain cancer, alittle different than GBM4,but still a high grade brain cancer. Dealing with the 'not knowing' part is hard. My daughter was diagnosed in March 2010 and it has been a up hill battle ever since. I cried everyday for almost a year and now I am just sort of numb. People tell me to enjoy every minute with her(which I do do), and to be positive but, it can be so hard to be positive all the time. Sometimes I feel that time is slipping away and that everyday brings us closer to the end. I continue to pray for God to take care of her. I know he will, I'm not sure if it will be here or in heaven though. My daughter is 13yrs old and she hasn't had a chance to experience things in life yet, like her first kiss, drivers license, etc. If I could take her cancer away and give it to myself, I would. This is the hardest thing that we have ever had to go through and it is not over yet. Please keep in touch and let me know how your son is doing.
    I will pray for your son.

    RE:Brain Cancer Glioblastoma (Grade 4) *2011
    Hi my name is Brigette I live in Amarillo, Tx! My mother is 64 yrs old and is in Tulsa, Oklahoma right now and has been receiving her treatment there for sometime for Glioblastoma (Grade 4) She was diagnosed here in Amarillo,Tx in 2011 they removed a tumor that was right next to her brain stem in her Cerrabellum that is where the one is now where they are treating with a chemo pill and radiation. She is at Cancer Treatment Centers Of America in Tulsa, Oklahoma I would suggest that to anyone here that is in need of treatment for cancer. Before she went there It was like ok you have this long to live and they kept giving us shorter life expectancy times. Up there in Tulsa their great they treat the Mind, Body & Spirit and that is what they are about! Her Oncologist is #5 in the U.S. I met lots and lots of patients and they all love it there and said they were alive today because they gave them hope and also the treatment they are receiving there. If my mom was here I dont think she would be alive today just my opinion. I deal with it through support of God,family and friends and taking it day to day. I dont know what tommorow holds only God knows. So I need to enjoy the time I have with my mom today and every day after that as long as she is alive. They can feel when we are down and they dont need that they are going through enough. My mother is all of our best friends Ive been through somethings,but nothing nothing like this where tumors can pop up at anytime suprise here it is. That is where my faith comes in God is in control he knows how long she has I dont he gave us life and he is the only one that can take it away! My Sister is 41, I am 38, My Brother is 33 then she has grandchildren. So I know this is rough I will keep you in my prayers. She is doing 30 rounds of Radiaton, a Chemo Pill, Phyical Therapy, Occupational Therapy, Acccupuncuture, see as Diatietian important.Vitamins,Minerals and other Supplements. She has had a tumor that is 2 inches big in her cerrabellum again from front to back but the radiation has been helping along with the chemo pill they might due surgery only if it hasnt'shrunk enough we will have to see. The Doctor talked to me by himself about her life expectancy only because I asked they never bring it up unless you ask about what the life expectancy is he said 12-24mon but he said hes not God hard to say I Respect that answer.That is the longest time frame of life expectency we have ever gotten from any other doctor believe me .If you ever want to look up Cancer Treatment Centers of America I think that places email address is www.cancercenters.org if not I can find it for you. I will answer anything I can this is a scary disease,but God is in control and he decides what happenes. God bless you and your family and my prayers go out to you!
    Brigette L.
    Amarillo, Texas
  • sweetokielady72
    sweetokielady72 Member Posts: 3 Member
    TAremote said:

    Yes,I can relate to your situation. I too have Glioblastoma, mine is stage 4, and is located on the occipital lobe which controls your vision. I had my operation on Aug 21st, where they got 80% of the tumor. I completed 6 weeks of radiation along with chemo during the same time frame. My Chemo was also tmeador. My first MRI after treatment showed the tumor had not grown that much. I go back next week for another MRI and floowup visits with the Onocologist, and Neurosurgeon. From those visits we will set another treatment plan. This type of cancer is a hard one to get rid of, but remember that everything the Doc's tell you are just averages. Many people have beaten this cancer. Keep looking for new treatment, and let your Onocoligist know about what you find. There are many trials out there that might help.
    Keep the faith, and God bless you and your family. If I can help, please let me know

    Tom

    My Person Email is [email protected] you can email me there if you wish I would love to stay in contact with you Tom. You dont meet alot of people out there who have what you and my mother have I need your positive attitude and anything to help my mother stay alive believe me ty ty ty from the bottom of my heart. I am a christian so I do have faith and hope that is all I have so is my mother and sister. I will pray for you as well. GOd bless you and email me anytime it would be easier through my personal email. I use to live in Oklahoma that is why it says okielady I am now in Amarillo, Tx I love it here. God bless you we will keep up the good fight.
    God bless you and your family.
    Love,
    Brigette Lee
  • leen
    leen Member Posts: 1
    TAremote said:

    Yes,I can relate to your situation. I too have Glioblastoma, mine is stage 4, and is located on the occipital lobe which controls your vision. I had my operation on Aug 21st, where they got 80% of the tumor. I completed 6 weeks of radiation along with chemo during the same time frame. My Chemo was also tmeador. My first MRI after treatment showed the tumor had not grown that much. I go back next week for another MRI and floowup visits with the Onocologist, and Neurosurgeon. From those visits we will set another treatment plan. This type of cancer is a hard one to get rid of, but remember that everything the Doc's tell you are just averages. Many people have beaten this cancer. Keep looking for new treatment, and let your Onocoligist know about what you find. There are many trials out there that might help.
    Keep the faith, and God bless you and your family. If I can help, please let me know

    Tom

    Any suggestion
    Hello Tom,
    My brother is suffering from glioblastoma. He had his surgery, all the tumor is out and he is currently under chemotherapy.
    Is there anything that you share that would be helpful? diet or anything else that helped you
    Thank you so much
    Leena
  • JCM2468
    JCM2468 Member Posts: 4
    leen said:

    Any suggestion
    Hello Tom,
    My brother is suffering from glioblastoma. He had his surgery, all the tumor is out and he is currently under chemotherapy.
    Is there anything that you share that would be helpful? diet or anything else that helped you
    Thank you so much
    Leena

    GBM Grade 4
    Hi,
    My father was too diagnosed with Glioblastoma Grade 4 he has since radically changed his diet.
    We have followed lots of other diets of people who have had same tumour, One guy who got rid of it, and also didn't do much treatment as he hated it.
    We have my father eating
    Organic Cottage Cheese with one tablespoon of Flaxseed Oil (very high in Omega 3) Lots of brain tumour victims use Flaxseed Oil in their food (Salads, Yoghurts, Cottage Cheese etc)
    So my father eats that once a day,
    Whilst also taking the following
    Inner Health Plus capsules
    Hi-Strength Coenzyme Q10 Capsules
    Betacarotene vitamins
    Magnesium Forte 4000 Capsules
    Fish Oil Capsules
    Vitamin C Powder (In Juices, Smoothies Etc)
    Super Greens Powder also in Juices etc.

    We also follow good diets out of a book called Shattering the Cancer Myth Which has about 10 Pages of Different Foods, Drinks etc which are good for cancer.
    My father is also getting into meditation
    After having his tumour removed 100% He has not been as active as he is now in about 15 years and He hasn't started Chemotherapy or Radiation Yet and Isn't very keen too,

    Here is an article of the man who's diet we are following.
    http://www.healingcancernaturally.com/brain-cancer-cure-testimonials.html

    Hope this helps!