Glioblastoma Multiforme (grade 4)

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  • Diamondhorse_1
    Diamondhorse_1 Member Posts: 1
    Glioblastoma Grade 4
    In March of this year my 14 year old son was diagnosed with a Glioblastoma Grade 4 in his spinal cord. He had surgery in March and then received Proton Therapy, which is a form of radiation, and is currently on Temodar. I was told by the doctor that this is very rare and these normally develop in the brain. Due to the surgery, my son is in the process of learning how to walk. Has anyone heard of this or does anyone have any information or know where I can get information on this? I have tried researching this and the information that is available is very limited.

    Thanks

    Pamela
  • smb96
    smb96 Member Posts: 4
    Sceerd said:

    Update
    I'm still here!! I was put on a Clinical Trial with Vorinostat, Avastin, and CPT-11. However, I was getting really sick and the cause was determined to be CPT-11 which was dropped and now I'm tolerating just fine. All my MRI's have been clean and life is good. I'm totally expecting a treatment failure eventually but I have a plan for that. Also I'm confident there is or will be a durable treatment in the very near future. Have a look at the Stem Cell Vaccines like the one from Immunocellular ICT-121 looks very promising.In the last year I've learned so much, bonded with my estranged family, and got married. My whole lifestyle has changed and I have a completely new perspective.I am much more food and nutrition conscience than I use to be and am enjoying life in a completely different way. I have no expectation that I'm going to beat this thing but at the very least the time I've had and will have is worth most of the life I had before. Having said that I am optimistic things will work out.

    Sounds like you are already beating this thing!!

    My mom was diagnosed in October and had surgery to remove the tumor in her frontal lobe on 10/13. They got just about all of the tumor except for a small part that was too close to a sensitive part of the brain. She is currently doing radiation and chemo (Temodar) for 6 weeks. We are remaining very hopeful and optimistic. She's doing well so far with the treatments, little to no side effects to date. I see a lot of the comments in this thread are old, but I see that the more recent one's are all very optimistic and that gives me a lot of hope. Sounds like medicine has come a long way and there are many more treatments for this type of tumor. I pray that my mom will be around for many years to come. Yes, it will be a long hard road, but that's okay...we can do it and we will do it.

    Good luck to you and remain positive and in prayer.
  • Tiger729
    Tiger729 Member Posts: 4

    Your Update
    Thank you so much for your update. It is the only current and positive feedback I have found online. I recently was diagnosed with GBM4 and had surgery within a week. Now am on chemo and radiation treatments. This whole thing has been surreal to me and my family. The only good thing being that I too have been reconnected with estranged family members. Have also decided to make huge lifestyle change in regards to work and living arrangements. My husband & I are also becoming nutritionally conscious. Anything it takes to get through and past this. I am not long into treatment and have had no follow up MRI scans but am hopeful that by end of treatment it will be good news. We will only focus on the positive in our household now. No negative input allowed!!!! Hope everything continues to improve for you. Catch up soon....

    Hubby had GBM4
    My husband was diagnosed 11/5/1010, surgery was on 11/12, we were told that 75 to 80% was removed. 30 radiation treatments, he had MRI last week and NO NEW GROWTH, now he is on Temodar. 5 days on and 25 off. He just finished his first week of Temador. We would love to hear some positive news about Temador. He did fine on the five days of taking the drug and today, the third day of not taking it, he had a really bad day. Hopefully you have had a positive experience with your treatments. God Bless and keep you in the palm of his hand.
  • sjonesleo
    sjonesleo Member Posts: 2

    Glioblastoma Grade 4
    In March of this year my 14 year old son was diagnosed with a Glioblastoma Grade 4 in his spinal cord. He had surgery in March and then received Proton Therapy, which is a form of radiation, and is currently on Temodar. I was told by the doctor that this is very rare and these normally develop in the brain. Due to the surgery, my son is in the process of learning how to walk. Has anyone heard of this or does anyone have any information or know where I can get information on this? I have tried researching this and the information that is available is very limited.

    Thanks

    Pamela

    GRADE IV GBM
    My 17 YO son was diagnsed back in February with GBM grade IV. Please read my story in my expressions. I added you as friend. If you have any questions that I can help you with or anything after you read my story, please contact me on this webite or email [email protected]
  • Dulcie60
    Dulcie60 Member Posts: 1
    Tiger729 said:

    Hubby had GBM4
    My husband was diagnosed 11/5/1010, surgery was on 11/12, we were told that 75 to 80% was removed. 30 radiation treatments, he had MRI last week and NO NEW GROWTH, now he is on Temodar. 5 days on and 25 off. He just finished his first week of Temador. We would love to hear some positive news about Temador. He did fine on the five days of taking the drug and today, the third day of not taking it, he had a really bad day. Hopefully you have had a positive experience with your treatments. God Bless and keep you in the palm of his hand.

    GBM
    Hello Tiger729

    I know what you are going through. My husband has been through the same chemo. It is early days for your husband and it will get better as he gets stronger after the op, I'm sure. My husband was rushed into surgery in November 2007. He then had radio/chemo, then chemo. He has never looked back since his op, has no symptoms and his MRIs have all been stable. He lives a perfectly normal life (in fact he's on a plane to China as I write for work reasons). On my birthday in April we went for an 8 mile walk. It's our 25th anniversary of being together on May 15. We never thought we'd make that date. Good luck to you, your husband and family.
  • kathyml
    kathyml Member Posts: 1
    Dulcie60 said:

    GBM
    Hello Tiger729

    I know what you are going through. My husband has been through the same chemo. It is early days for your husband and it will get better as he gets stronger after the op, I'm sure. My husband was rushed into surgery in November 2007. He then had radio/chemo, then chemo. He has never looked back since his op, has no symptoms and his MRIs have all been stable. He lives a perfectly normal life (in fact he's on a plane to China as I write for work reasons). On my birthday in April we went for an 8 mile walk. It's our 25th anniversary of being together on May 15. We never thought we'd make that date. Good luck to you, your husband and family.

    gbm
    Hello, My husband was diagnosed with GBM IV oct. 2009. He had surgery and radiation and temador. It returned very small in August 2010. more surgery and now avaston every other week. Except for being a little ADD like and tired you wouldn't even know he was sick. He had a clear mri yesterday. I can't get him to lay off the meat and sugar but he is doing some natural supplements - Flor essence, turmeric, vitamin d, and Dr. Weils mushroom pills. I wondered if anyone else has any advice. And I wanted to ask Dulci60 if your husband is still doing treatments of any kind. Our 25th anniversary is 2012 and I am hoping we can also celebrate!
  • DJEvans
    DJEvans Member Posts: 3
    sjonesleo said:

    GRADE IV GBM
    My 17 YO son was diagnsed back in February with GBM grade IV. Please read my story in my expressions. I added you as friend. If you have any questions that I can help you with or anything after you read my story, please contact me on this webite or email [email protected]

    Teens with GBM
    My 15 year old was just diagnosed on June 17th. He had surgery on June 17th, but was not able to get it all removed. We just found out today that it is moved into his Brain Stem, and will be starting radiation tomorrow. We were supposed to be doing temodar at the same time as radiation, but the Radiology oncologist is concerned about doing chemo and radation at the same time in the Brain Stem area.

    I am just really looking for some network or others who are going through this with teenagers and get some prospective on their experiences, as well to as maybe find some network or support groups for my son with others that are going through the same thing. It seems to be hard to find others in his age group that are going throught this.

    If you can provide me with any ideas or possibly online groups that would be so helpful.

    My heart and prayers are with everyone other family that is experiencing this!!! I set up this forum under my son's name so he can reference it as well, but I can be contacted at [email protected]
  • EDClarke
    EDClarke Member Posts: 5
    Toshy said:

    30+ years!
    I was diagnosed when I was 7 in 1977. It was in operable as it was on my brainstem. I had radiation treatments in late 70's, chemo in early 80's. Acouple of years after stopping chemo. I was told the tumor no longer showed up on the CT scan. Later MRIs continued to be clear.

    I was told later I had been given 6 months to live and within a month or two it was 6 weeks... Although mine has been a hard life I'd say, it's been a very happy one!

    I was diagnosised with an malignant astrocytoma but now the Cleveland Clinic doctor I've just seen is guessing it was actually a GBM.

    If you are interested in more details about my story see "my story" in my EXPRESSIONS.

    Please share any info you
    Please share any info you may have! We can be reached at [email protected] My husband has a GBMlevel IV and we are looking for any insight that survivors may have!
  • moonwitch
    moonwitch Member Posts: 3
    My beautiful amazingly
    My beautiful amazingly strong mom, 48, had a seizure July 2 2012 and was rushed to emergency where they found her brain tumor. She had surgery on July 14 where they removed most of the tumor and was diagnosed with a Glioblastoma stage 4 Aug 15. Started chemo/radiation aug 22 and completed one out of six weeks of treatment when she became incredibly sick. As her caregiver I made her go to emergency, even though she didn't want to. Her tumor had doubled in size since her surgery. They told me my mom had days or weeks left to live. She was in the hospital for 3 days loosing her mind. She couldn't formulate sentences correctly or get out of her bed anymore. She kept talking about deceased relatives and pets in the room. She also told me she would die on sept 11. I decided to take her home with hospice and she died two days later on Sept 11, 2012. My mom was my best friend, I'm 26 and am happy she's not suffering anymore but I miss her very much. This is an EXTREMELY aggressive disease and the treatment only made her quality of life worse in my opinion. She had a very positive attitude up to her last waking day and I am sorry for anyone who has to deal with this monster
  • JCM2468
    JCM2468 Member Posts: 4
    moonwitch said:

    My beautiful amazingly
    My beautiful amazingly strong mom, 48, had a seizure July 2 2012 and was rushed to emergency where they found her brain tumor. She had surgery on July 14 where they removed most of the tumor and was diagnosed with a Glioblastoma stage 4 Aug 15. Started chemo/radiation aug 22 and completed one out of six weeks of treatment when she became incredibly sick. As her caregiver I made her go to emergency, even though she didn't want to. Her tumor had doubled in size since her surgery. They told me my mom had days or weeks left to live. She was in the hospital for 3 days loosing her mind. She couldn't formulate sentences correctly or get out of her bed anymore. She kept talking about deceased relatives and pets in the room. She also told me she would die on sept 11. I decided to take her home with hospice and she died two days later on Sept 11, 2012. My mom was my best friend, I'm 26 and am happy she's not suffering anymore but I miss her very much. This is an EXTREMELY aggressive disease and the treatment only made her quality of life worse in my opinion. She had a very positive attitude up to her last waking day and I am sorry for anyone who has to deal with this monster

    I am very sorry to hear
    I am very sorry to hear about your mother passing, I don't know how I would cope, My father was diagnosed August 2011 with GBM Stage 4,His tumor was the size of a large orange and they cut out what they could straight away, after that He REFUSED Chemotherapy and Radiation, and instead tried natural medicines, organic diets etc. They told us he would only have 3 months left because he had turned down therapy, but I'm glad my dad stayed strong and turned down chemo and radiation because from what I've seen it only makes everybody feel 100x worse, After his surgery he was on top of the world said he felt 15 years younger, Now a year and 2 months later the tumor had grown back to how big it previously was and they have cut it out again, only this time they didn't give him a "time" as most doctors are surprised he is walking and talking, the only thing he has ever had trouble with was his speech just after the operation, but it has come back perfectly fine now, He has seizures sometimes but apart from that he has a very positive attitude and still turns down chemo and radiation even though they try and talk him into it EVERY time he has an appointment. I was really sorry to read about your mothers suffering treatment really does make it so much worse its depressing. Hoping my dad gets through his, It really is the most aggressive type. I wish you all the best, She is in a better place now xxx
  • RLR
    RLR Member Posts: 36
    GBM 4
    Nacy: I am sorry to hear about you brother. Don't give up HOPE. God can and will help him through this. I was diagnosed just about 4 years ago (Dec. 15, 2008 and had surgery on 1/13/2009). At that time my surgeon Dr. Healy removed a 7.5 cm tumor. I then went through 30 treatments of radiation and I have been on Temodar chemo ever since Jan/15/2009. I have been doing very well( i say about 95%). I used to have MRI's every 2 to 3 months. With my last 2 coming back so good they have decided to now go every 6 months. I am still on the same Temodar chemo and I'm told I will be for the rest of my life as long as I keep tolerating it this well. If you would like to talk about it you can call me at 419-592-1226.
    Blessings
    Rick
  • fmkadem
    fmkadem Member Posts: 3
    JCM2468 said:

    I am very sorry to hear
    I am very sorry to hear about your mother passing, I don't know how I would cope, My father was diagnosed August 2011 with GBM Stage 4,His tumor was the size of a large orange and they cut out what they could straight away, after that He REFUSED Chemotherapy and Radiation, and instead tried natural medicines, organic diets etc. They told us he would only have 3 months left because he had turned down therapy, but I'm glad my dad stayed strong and turned down chemo and radiation because from what I've seen it only makes everybody feel 100x worse, After his surgery he was on top of the world said he felt 15 years younger, Now a year and 2 months later the tumor had grown back to how big it previously was and they have cut it out again, only this time they didn't give him a "time" as most doctors are surprised he is walking and talking, the only thing he has ever had trouble with was his speech just after the operation, but it has come back perfectly fine now, He has seizures sometimes but apart from that he has a very positive attitude and still turns down chemo and radiation even though they try and talk him into it EVERY time he has an appointment. I was really sorry to read about your mothers suffering treatment really does make it so much worse its depressing. Hoping my dad gets through his, It really is the most aggressive type. I wish you all the best, She is in a better place now xxx

    Living happy is what really matter
    Hi JCM,

    I really appreciate your father strength and wish all patients wll be as strong as him.
    My father, 60 years, who I love so much and I can't imagine a life without him, was diagnostic with GBM IV early July 2012, he had only biopsy in august and had 6 1/2 weeks of radio+chemo therapy. Now he is back on a second chemotherapy treatment but he is feeling very weak (right hand and leg barely move, and can not read or speak in a proper way). What really kills me now is whenever I want to speak with him he always say: sorry I can't speak, sorry I can't do anything --> he is being sorry and we can not do anything about it !!!!
    I know this is a deadly illness but I feel that weakness is killing my father, he used to be always so strong so wise and so happy (he used to make us laugh all the time) and now I see him lost in a world that I can't understand, and I see in his eyes that he wants to give up but at the same time he is accepting this for us.
    If I will have a will it will be: either bring dad as he was or take him, I can't stand the fact that my father feels weak and he is being sorry about that and I can't explain to him that we love him and it is ok, he is strong he has a character and this is killing me.
    I sometimes try to imagine what he feels but I can't, I feel that he is lost in a world tat no body can understand. He asked me many times what is happening to him ? why he can not read any more, why he can not speak properly, why he is feeling weak, and I LIED, I couldn't tell him the truth, I know that he knows but I never was able to tell him the truth, I hate GBM and I hate whatever created his GBM.
    I hope the best for everybody but I hope that we live proud and healthy or we die
  • Seenie44
    Seenie44 Member Posts: 2
    fmkadem said:

    Living happy is what really matter
    Hi JCM,

    I really appreciate your father strength and wish all patients wll be as strong as him.
    My father, 60 years, who I love so much and I can't imagine a life without him, was diagnostic with GBM IV early July 2012, he had only biopsy in august and had 6 1/2 weeks of radio+chemo therapy. Now he is back on a second chemotherapy treatment but he is feeling very weak (right hand and leg barely move, and can not read or speak in a proper way). What really kills me now is whenever I want to speak with him he always say: sorry I can't speak, sorry I can't do anything --> he is being sorry and we can not do anything about it !!!!
    I know this is a deadly illness but I feel that weakness is killing my father, he used to be always so strong so wise and so happy (he used to make us laugh all the time) and now I see him lost in a world that I can't understand, and I see in his eyes that he wants to give up but at the same time he is accepting this for us.
    If I will have a will it will be: either bring dad as he was or take him, I can't stand the fact that my father feels weak and he is being sorry about that and I can't explain to him that we love him and it is ok, he is strong he has a character and this is killing me.
    I sometimes try to imagine what he feels but I can't, I feel that he is lost in a world tat no body can understand. He asked me many times what is happening to him ? why he can not read any more, why he can not speak properly, why he is feeling weak, and I LIED, I couldn't tell him the truth, I know that he knows but I never was able to tell him the truth, I hate GBM and I hate whatever created his GBM.
    I hope the best for everybody but I hope that we live proud and healthy or we die

    Hello fmkadem
    My family is

    Hello fmkadem

    My family is going through similar things with our grandma (diagnosed last week of January 2012, 78 years of age). Her left side has gotten weak and now slowly her right side is. I know it can be heartbreaking and hard when your dad appears to be giving up. My grandma goes through the same stuff and we just remind her to stay positive and try to do as much as we can so she has a bit of independence (her bedroom at home has been converted into a mini hospital room). Just remember to remain strong. It is hard, but we have found that if my grandma feels she is being a nuisance to us, that is when she feels like giving up and becomes negative.
  • missy 1994
    missy 1994 Member Posts: 8
    My granddaddy has the same

    My granddaddy has the same tumor, I am scared because it never really sunk in at all and everyday I read a lot of stuff about this tumor and I still remain to be positive because although there are a lot of horror stories about this tumor, there are also the glimmer of hope that there are survivors some even live years!

    I know my grand daddys old, 75 but I am not gunna give up- I am looking everywhere for answers,advice and information. I have probably done more reading now in my whole entire life. I know that I live in the UK but I have no where else to turn to, my parents are dead,brother and my grandaddy is the one to be my parent so now it's all so scary for me.

    Reading peoples experiences here helps a lot, it makes me feel a bit better and sometimes cry too. My grandaddy had his tumor removed but not fully there is a small bit in there still and he has undergone radiotheraphy with a course of steroids and he was fine once the tumor was removed and radiotheraphy I had the sound of mind person back into my life BUT this February I saw a dramatic decline in his memory,his state of mind and everything was going crazy so he was omited to hospital, they found out he had pnemonia I think? because he is sick and old if I am honest with myself, thats why he got it and I don't think this is the case with all cancer patients as I am not wise enough on the subject.

     

    The doctor explained to me the radiotheraphy only helps contain the cancer from not spreading or getting worse and does not kill the good cells like chemo does but again, I am unsure on it all as it is all overwhelming to take in as I don't have any other family to support me or fully advice or help me absorb this all in.

    I am scared if I am honest as I let the horror stories consume me and people like the nurses tell me horrible things when that is not even their job to do so, it is the consultant who deals with his case. I remain positive every single day, pray to my mum for courage and strength and pray for everyone who is going through this situation too. I like reading the stories because knowing I am not alone helps me a lot.

     

    Positivity is the key, I sure as hell feel like I have had to do a lot of growing up lately but I personally take everyday as it comes now and cross every single bridge when it comes to it.When people tell me negative things I push it aside and the important thing is I have this pact with my grandaddy to never give up!

  • cindysuetoyou
    cindysuetoyou Member Posts: 513

    My granddaddy has the same

    My granddaddy has the same tumor, I am scared because it never really sunk in at all and everyday I read a lot of stuff about this tumor and I still remain to be positive because although there are a lot of horror stories about this tumor, there are also the glimmer of hope that there are survivors some even live years!

    I know my grand daddys old, 75 but I am not gunna give up- I am looking everywhere for answers,advice and information. I have probably done more reading now in my whole entire life. I know that I live in the UK but I have no where else to turn to, my parents are dead,brother and my grandaddy is the one to be my parent so now it's all so scary for me.

    Reading peoples experiences here helps a lot, it makes me feel a bit better and sometimes cry too. My grandaddy had his tumor removed but not fully there is a small bit in there still and he has undergone radiotheraphy with a course of steroids and he was fine once the tumor was removed and radiotheraphy I had the sound of mind person back into my life BUT this February I saw a dramatic decline in his memory,his state of mind and everything was going crazy so he was omited to hospital, they found out he had pnemonia I think? because he is sick and old if I am honest with myself, thats why he got it and I don't think this is the case with all cancer patients as I am not wise enough on the subject.

     

    The doctor explained to me the radiotheraphy only helps contain the cancer from not spreading or getting worse and does not kill the good cells like chemo does but again, I am unsure on it all as it is all overwhelming to take in as I don't have any other family to support me or fully advice or help me absorb this all in.

    I am scared if I am honest as I let the horror stories consume me and people like the nurses tell me horrible things when that is not even their job to do so, it is the consultant who deals with his case. I remain positive every single day, pray to my mum for courage and strength and pray for everyone who is going through this situation too. I like reading the stories because knowing I am not alone helps me a lot.

     

    Positivity is the key, I sure as hell feel like I have had to do a lot of growing up lately but I personally take everyday as it comes now and cross every single bridge when it comes to it.When people tell me negative things I push it aside and the important thing is I have this pact with my grandaddy to never give up!

    i am so sorry

    Dear Missy, 

    Your situation breaks my heart. I wish you were closer to me so I could help you in some way, maybe take you to coffee or bring a dinner or something. Please know that my thoughts and prayers are with you.

    I won't go into all the details about my situation except to tell you the main facts: my then 25 year old son, perfectly healthy, was diagnosed with a grade three anaplastic oligodendroglioma. He was told that he had 3 to 5 years. He died after 3 1/2 years, on Oct. 15th. My heart is broken and I'll never be the same. But I know he's in Heaven and that I will see him again some day. 

    You are doing all the right things, Missy. Researching, reading, talking to people, being there for your grandfather, and most importantly, keeping your hope alive. It's a battle, I know. But you need to live with hope. Otherwise, it's not much of a life, and every minute counts, so good for you for being positive and for fighting for your grandfather. You are making sacrifices in your own life for the sake of your grandfather (staying with him, taking care of him, not doing stuff with friends). You will never regret doing these things later on in your life. One of the things that brings me the most comfort is knowing that I was always there for my son. You will be so glad that you were always there for your grandfather. But be sure to do some things for yourself too...that's very important. You need to be strong and healthy in order to help your grandfather. 

    GBMs are bad. I would be not be truthful if I acted like they were not terribly serious and deadly. But sometimes for unexplained reasons, people are able to fight back and hang in there. I was like you...I didn't dwell on the bad stuff and I tried to always think and believe the good stuff. I think you are wise to be that way. If I had to do it all over again, I'd be the same way. 

    Here's some links that might help you have some hope:

    http://www.virtualtrials.com/survive.cfm

    http://www.livingwithbraincancer.net

    Please keep posting and let us know here on CSN how you and your grandfather are doing.

    Love and blessings and strength and peace to you,

    Cindy in Salem, Oregon (West Coast USA)

  • Stay_Strong
    Stay_Strong Member Posts: 1
    JCM2468 said:

    I am very sorry to hear
    I am very sorry to hear about your mother passing, I don't know how I would cope, My father was diagnosed August 2011 with GBM Stage 4,His tumor was the size of a large orange and they cut out what they could straight away, after that He REFUSED Chemotherapy and Radiation, and instead tried natural medicines, organic diets etc. They told us he would only have 3 months left because he had turned down therapy, but I'm glad my dad stayed strong and turned down chemo and radiation because from what I've seen it only makes everybody feel 100x worse, After his surgery he was on top of the world said he felt 15 years younger, Now a year and 2 months later the tumor had grown back to how big it previously was and they have cut it out again, only this time they didn't give him a "time" as most doctors are surprised he is walking and talking, the only thing he has ever had trouble with was his speech just after the operation, but it has come back perfectly fine now, He has seizures sometimes but apart from that he has a very positive attitude and still turns down chemo and radiation even though they try and talk him into it EVERY time he has an appointment. I was really sorry to read about your mothers suffering treatment really does make it so much worse its depressing. Hoping my dad gets through his, It really is the most aggressive type. I wish you all the best, She is in a better place now xxx

    GBV Support

    Hi ! 

    My mom was diagnosed 3 weeks ago with GBM Stage 4.  It was removed and from what they tell us most of it is gone.  I was hoping that you would be able to give me some information and support as we start chemo and radiation.

    Please contact me if you would like

    [email protected]

    Thank you

    Jennifer 33, Canada

  • Mariaol23
    Mariaol23 Member Posts: 1
    Gliobastoma multiforme (grade 4)

    The reason nobody coments is that very little porcentage of people survive after the tumor was removed.  Las year my brother  had a brain tumor removed and it was gliobastoma multiforme grade 4 he hag his surgery on July 17 and died on August 30. So good luck with your brother.

  • Genoarose
    Genoarose Member Posts: 1
    Glioblastome grade 4

      I was diagnosised 2 years ago. I had surgery, most of the tumor was removed, then had 30 radiation treatments and 6 months of Chemo pil (Temodar). After the Chemo, my Oncologist wanted me to continue the Chemo for another 12 months, he said he didn't know of anything else he could do, so I went to Cleveland Clinic for a 2nd opinion. I qualified for a new study program I am on the study for a 1st occurance. After 3 months on the study and another course of Temodar, my remaining tumor had shrank 50%. Currently, the tumor has continued to shrink although minimal, but it is certainly not growing! Below is some information on the study if you're interested. Good luck and God bless you!

    Recurrent Glioblastoma Treatment Options

    If glioblastoma (GBM) returns, doctors may recommend additional surgery, radiation, or chemotherapy. However, in some cases, surgery and radiation are no longer possible. In those cases NovoTTF Therapy may be an option for patients. NovoTTF Therapy is a noninvasive regional therapy that targets dividing cancer cells in the brain and generally does not harm healthy cells. NovoTTF Therapy is approved as a monotherapy, a stand-alone treatment option, for patients with recurrent GBM.

    Learn About NovoTTF Therapy

    Rose


     
  • John_140
    John_140 Member Posts: 1
    edited August 2017 #60
    Glioblastoma stage 4

    hello, I just want to hear any stories of people that have gone through this.  My dad was diagnosed in January 1 of 2017,  and passed away May 14 of 2017.  He did chemo and radiation but the cancer was so aggressive. He had a seizure one morning before a hike and that's how it was discovered. It killed me because his personality was never the same so I felt like for those five months I could not tell him how I truly felt. 

     It seemed every time I thought he couldn't get any worse ,  I was quickly corrected.  Vision got horrible ,  he did not make sense most of the time , and his speech got very bad.  

     Nothing is worse than having to help your dad get dressed because he canT dress himself. It's the emotional aspect of it watching him be so vulnerable. 

     

     In that short five months I watched him lose his hair ,  gained lots of weight,  from the radiation and chemo,  although I could see his legs and arms losing the muscle they once had . 

     

     Before treatment he always said I'm going to kick **** and take names ,   He seemed eager to go to treatment and I remember him telling me it's the little things in life that he values most now .  After about a month of treatment he would sleep the entire time to treatment and the entire time back .  He was very nauseated and complained of being sick . 

     

     The days  leading up to him passing away , he was under hospice care unable to walk, talk, or eat.  We were given a book from hospice that talks about the last days of life's and I can't exaggerate that those books read it Word for Word.   I would read something in that book and it killed me because I would see my dad Doin the same symptoms I had just read about.

     

    He would  spit out his morphine and medication and we would try to give it to him , the morning he passed  he had a seizure .  The hospice nurse prepared us and told us that it would be most likely the thing to kill him  and it was. 

     

     My dad died while I held his hand ,  and my mom by his side .  

     

     Maybe  this is not the best place to talk about it and I do not want to scare anybody who has been diagnosed because everyone's experience with it is different I just really wanted to share my Personal  experience with it .