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Glioblastoma Multiforme (grade 4)

nancys
Posts: 336
Joined: Aug 2000

Hello, I was dissappointed to see no posting in this forum. Does anyone looking in, have any information about this menacing tumor. My brother has just survived surgery and a big part of the tumor was removed. This was a primitive cell and may respond well to radiation. Has anyone had any experience with Chemo and what drug was used? We are just at the beginning of treatment and any information will be so VERY MUCH APPRECIATED. Your friend, Nancy

girl
Posts: 1
Joined: Oct 2000

My mother recently had surgery (10/17) for the same type of tumor. Check out such websites
as the American Cancer Society and American Brain Tumor Association. I have found a couple
of sites with depressing statistics that date back to 83-94, and also a couple of sites that give
me hope because they speak of 3, 6, 8 or more year survivors of this type of cancer. You really
have to dig for info-it's a rare type of cancer, and thus not much is available. I'll pass on whatever
I find. Don't give up-I'm not-and neither is my Mom. girl

nancys
Posts: 336
Joined: Aug 2000

Hello, I had given up on checking this site but found your post today. God Bless you for your reply. My brother's surgery was 10/21. The surgeon was unable to remove the whole tumor because of it position near the brain stem. He has had almost all of his radiation treatments, just one week left, and the the doctor will wait one month to do another MRI to see what results the radiation shows. He is still taking decadon (steriod) for swelling and when they cut back the doseage, he gets fuzzy and forgetful, so there is still much swelling there. I would love to know about your mother and how she copes with this. Tom is so filled with love and GOD that he is a man to greatly admire. Tom's tumor was about 8cm and dumbell shaped, on the right side of his brain and extending down the back toward the bain stem. I would really like to read the sites that give encouragement. I found that harvard.edu/patient guide gave me the most informatative info, but not very encouraging information. Please write back. My email is kinkeeper@kc.rr.com if it is easier. Thank you again for replying..Your friend, Nancy

loulou
Posts: 66
Joined: Sep 2000

Hi nancy, I hope every thing goes well for your brother. I am interested in what kind of radiation your bother is having, and what kind of symptoms he was having. Thank you, loulou

nancys
Posts: 336
Joined: Aug 2000

Hi LouLou, thanks for responding to my post. My brother had surgery to remove the tumor but the surgeon could not remove all of it. The radiation was just finished and I will have to find out what kind of radiation they called it. I did not know there were different kinds. I know they made a mask for him to wear during the treatment and it only lasted about 5 minutes. His long term memory is strong and correct but he has a little trouble with his awareness of everyday things. His walk is a little unsteady and slow. He talks less than he used to, and sleeps a lot. This all started this summer and Doctor's thought he had had a stroke until the MRI. What chemo drugs have you been on, LOULOU, and how did they effect you. Were you nauseaed? I am in chemotherapy right now for breast cancer,( hard to imagine that my brother and I both have cancer at the same time) Anything you can tell me about nutrition to boost the immune system would be great. My email is kinkeeper@kc.rr.com if you would rather use that. Please keep in touch. Your Friend, Nancy

orville
Posts: 3
Joined: Apr 2004

My name is Lorraine Carbonetti. My husband Orville Carbonetti had surgery for a brain tumor on March 5th. It was a Grade IV malignant tumor with two small tumors that had already metasized. The surgeon removed the two large tumors, but could not remove the two smaller tumors because of the depth of them into the brain and it would cause great problems to his motor skills. Orville has started radiation and taking a chemotherapy medication in pill form, Temator. He is doing quite well from the surgery, but he has very poor communication skills and his memory is not good and also his handwriting is not good. Orville is 79 years old and the first indication that we had was one month ago when he could not respond to a question that I had asked. He was always very active and is very depressed at this time.

lisancarl
Posts: 4
Joined: Jun 2002

my father-in-law was diagnosed w/ the exact type brain cancer. The treatment sounds like what he was told today. He has his 1st MRI tomorrow since surgery. Love to hear how folks are doing since these postings. Anyone wishing to email direct feel free lisa64@usadatanet.net Also, I am in the Rochester, NY area Treatment is being done @ Strong Hospital. If there is anyone out there that is also receiving treatment there please let me know. God Bless you all! Lisa

morrxs
Posts: 6
Joined: Jan 2003

I also have GBM (diagnosed in October 2002). I am on temodar as well. You can visit my web site http://206.50.22.26/testweb/morris for details. I am very interested in your naturopath. We (my wife and I) are following a diet by Patrick Quillin PhD, RD, CNS (http://www.4nutrition.com).

mego
Posts: 1
Joined: Nov 2000

Hi there,
I am new to this web site. My brother-in-law just had surgery to remove a glioblastoma, level 4 two weeks ago. He had radiation wafers placed in his head, but they ended up causing an infection and had to have them removed with another surgery. I am wondering how your brother is doing. My brother-in-law gets home from the hospital today and will start radiation in a week.

nancys
Posts: 336
Joined: Aug 2000

Hello Mego, I was happy to see your post this morning. I check the site daily, but not too many talking here. My brother has done 6 weeks of radiation and now will see an Oncologist on Dec. 1st. His tumor was dumbell shaped and on the right side of his brain. They removed what they could, but could not reach it all for fear of leaving him too disabeled. He has had physical therapy and is starting back this week for more physical therapy and also some cognitive therapy. His recall is undisturbed and he is one to remember everything that no one else can remember. But his awareness of his everyday surroundings is not as good. Like when he washes his hands, he will never turn the water back off. Opens the door but will never close it. He gets a little confused finding his way from one place to another. His left leg and left arm are still not as strong as the right side. In some ways this resembles a stroke. My brother is very able to talk about things but I notice he is slower to speak and when several people are talking it is hard for him to concentrate on the conversation. He sleeps a lot in his recliner, taking little naps on and off all day and all evening. I'm sorry to hear the radiation wafers did not work for your brother in law. How terrrible that they had to do another surgery!! I have heard of the chemo wafers but not the radiation wafers. MD Anderson in Houston is doing trials with the chemo wafers. They work well for some, but not a sure thing. This is such a devastating cancer!!! Please keep in touch with me and we will trade information about therapies and treatments, maybe we can help each other. Your friend, Nancy

delmedico
Posts: 1
Joined: Apr 2001

Hi Nancy,my brother was diagnosed the same as yours. They found the tumor in November and Jim has completed radiation. He has had one surgery and has decided against another. No chemo has been tried. He is getting weaker and is on morphine for pain. We don't know what else to do. His faith in the Lord sustains him. Sorry to hear about your brother. I would be happy to hear from you, Dave.

daverichman
Posts: 2
Joined: Mar 2002

Dave,
I also have GBM (diagnosed in August 2001) and underwent radiation. Most recently I have taken Temador by mouth and have had good results, I feel really good. I am on my third round of Temador (five days each time). I encourage you to try this chemo because quality of life is much better! God has also richly blessed me as I stay in His word, He is in total control (II cor.4:16-18). Keep in touch, Dave Richman

kempenl
Posts: 13
Joined: Jan 2005

Can you please tell us why he chose no chemo? Can you tell me how old he is?
thank you, kempenl

cooldad
Posts: 2
Joined: Mar 2003

Hi, how is your brother doing? If treatment started in Sept, how is his condition now? My husband has GBM and was diagnosed in June 02, since then he has had 8 weeks of radiation and chemo (temodar) and 2 surgeries to remove tumor. He has also had trouble with blood clots and a brain hemmorage, which also required surgery. He still takes temodar 5 days amonth and is learning how to walk again and for the most part he is still himself and doing great. His last Mri showed no recurrance and the docs said that he is walking example of a miracle. The hemmorage was so bad they are surprised at how he has recovered. They said that the hemmorage actually helps the tumor and at this point there is no tumor to be found. Please let us know how your brother is doing.

slojo
Posts: 1
Joined: Apr 2003

cooldad- my husband has GBM ,diag. May, 2002, has had rad. & now second surg. and placed Glio (chemo) wafers in the cavity, 4/3/03.. Isn't recovering as well as we expected.. I think the chemo damaged healthy tissue. But we have hope!! Sounds like your's is doing GREAT! We also have a friend with the same-- he is doing well- I thought these were RARE!!! slojo

bevn
Posts: 2
Joined: Apr 2003

i am replying to your request for information
my mom sheila was diagnosed with glioblastoma
stage iv right before she almost died had to do emergency surgery to remove pressure but they could not get it all she was on pacltamaxl chemo and two types of radiation therapy. still we do not know if this will help. keep on searching
national cancer institute or sloan.org for info
it might help you. this is truly a walk thru hell! and i hope things get better for you.
sincerely bev.

fcheshir
Posts: 4
Joined: Oct 2003

My mother (54 years old) also diagonsed with glioblastoma. From what I have seen there is not much hope... BUT some people have survived this and why not her... anyway. I have been doing a ton of research already her tumor was just removed last thursday.. Oct. 2, 2003 I have found a website that "claims" to have found some sort of a drug or something that caused the overall body voltage to drop 20% and that cancer cells can not live when the bodies electical current drops this low. IE. Kills all of the cancer cells. Here is the site. Please let me know if anyone has heard of this and if so how effective. http://www.holisticcancersolutions.com/braintumorsarticle.htm
You can email me direct at fcheshir@yahoo.com.

Thank you!
Fred

mardee
Posts: 2
Joined: Sep 2010

Hi Fred,
Your post sounds interesting...did you ever find out any more about the treatment that lowers the body's voltage? Appreciate any info as I was just diagnosed with a grade iv gbm. Thanks, Bob

stevegbm49's picture
stevegbm49
Posts: 3
Joined: Sep 2005

i was diag'd 6/3/05 with gbm4.had a 7cm tumor resected on 6/06/05,said they got most all of it.i took temodar and full radiation series.had recurrance in nov.or at least thats when i had the mri that indicated it.i am now on cpt-11 and avastin,applied thru IV drips every other week.a recent MRI shows my new tumor shrunk by half in one months treatment..only four sessions.i continue to take this same treatment.original tumor was in upper right frontal and i had no deficits..only symptom was a headache which made my wife insist i go to the E.R.(thank God) i later had a seizure on thanksgiving day when they tried to take me off of dilantin.i stay on dilantin now at 500 mg a day.no further seizures since that one.i also took zofran as anti-nausea with the temodar,and still do with my current meds.Good luck to your and your brother and God bless.feel free to email me if you have any specific questions.

Sceerd
Posts: 8
Joined: May 2009

I have a recurrent Gliosarcoma in my right frontal lobe and am planning a second full resection including implantation of the Gliodel Wafers. After this surgery my plan is to take Avastin with CPT-11. So my question is how are you doing? Has your treatment worked out?
please let me know, I could use the encouraging news.

Sceerd
Posts: 8
Joined: May 2009

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.

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

That's very good news, sceerd, and just possibly you will beat this thing - it sounds like you've had some great life changes ;)
You ought to post the good news where it will get seen, though - this is a really old thread and it's hard to find anything in it.
stayingcalm

mpotter427
Posts: 2
Joined: Sep 2010

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....

Tiger729
Posts: 4
Joined: Nov 2010

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.

Dulcie60
Posts: 1
Joined: May 2011

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
Posts: 1
Joined: May 2011

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!

smb96
Posts: 4
Joined: Nov 2010

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.

RLR
Posts: 36
Joined: Sep 2009

I have heard so many bad things about the wafers but I am here to tell you I had them at the time of my surgery for GBM4 on Jan 13,2009 and have been doing very well every since that time.I had a 7 cm tumor debulked at that time. ( it grew from 2.5 cm to 7 cm in just 3 1/2 weeks) After surgery I had 6 weeks of radiation and have now been on Temadar for 1 1/2 years. The doctors all say I look great and am tolerating the chemo very well.I have never had a clean MRI but the Dr. says it has not grown and that is good news. I am on a chemo schedule of 5 days on and 3 weeks off. I truely believe that this thing is going to be something that I can live with for many years to come.
Take care and good luck, and God bless you.

kiki123
Posts: 1
Joined: Jan 2006

Naancy,
i was diagnosed with Anaplastic Atrocyoma in March 2005. I had 33 sessions of radiation lsting 5 minutes each concurrently taking low dosage temador (which has been shown to increase radiosensitivity) Raiation was very tough for me. Alot of swelling and therfore headaches, vomiting, dizziness, etc. later I found out the radiation had killed the core of the tumor i was told that when tumors die. they someimes swell up causing negative side effec that resemble tumor growth. Therefoer, don't take your brother's negative side efects as neccesarily negative, his tumor could be dying Good luck and I wish you and your brother the best.

Best wishes,
kiki123

Jenniferclay
Posts: 2
Joined: Sep 2008

I was a Owner/Hairdresser for 20 yrs. I owned my own salon for 18 yrs., when in the fall of
2005, I started having daily migrains, In Feb. 2006 I went to the ER and was immediately flown to Bristol, TN for surgery to remove the preasure on my brain from an astrocytoma grade 2. I took an at chemo pill called temador and no rad. That was when my life as I knew it was over, I had to sell my salon, I had a 12 yr. old,and had been married for 22 yrs. One and half years later I had another surgury at UVA Charollettsville,VA, Dr. Shciff and Shaffery are truely the best Neouro. Dr. and Surguon there is. They did my surgurey in Jan.2008, Which was suppose to be the last of the astrocytoma, BUT it came out to be Glioblastoma Grade 4.
Right away I started back on my temador and pinpoint radiaions for 42 days. I know what you mean about these websites. They can be very disappointing. I think the best info you can get on any illness, Is by someone who has been through it. God Bless. Jen

megryanj
Posts: 2
Joined: Aug 2008

My husband Arron, 35 yrs old, was dx'd May 29 2008 following an initial surgery in the left frontal lobe. A second surgery on May 31 2008 the surgeon was able to remove ALL 3 tumors.Arron completed IMRT radiation/150mg temodar chemo on Aug 4th and just restarted temodar450mg 2 nights ago. So far so good. 1st MRI last week came back "better than expected"(praise God!!)Arron is down to 1mg per day of Decadron and we are receiving a treatment plan/supplements this afternoon from a Homeopathic Dr. We are excited about this. She has advised ALL organic foods and Mass amounts of fresh vegetables. We have found juicing is the most efficient way to get the vegetables needed as they were not Arrons favorite prior to dx. We just take a 4-6oz "shot" of the concoction each day. We have 3 children ages 8, 13, and 16 and have only told them that daddy has cancer. I am not ready to tell them any more than that because I have so much hope and faith that we will have him more than 1-2 yrs. As soon as we receive our treatment plan today from the Homeopathic Dr. I will send. Good Luck and God Bless!!!Michelle @arronmichelle@msn.com

buffyt
Posts: 2
Joined: Sep 2008

My husband was dx'd on July 9 2008 and they operated and took as much of the tumor out as they could. He had radiation and is still on 2mg decadron a day they say if they take him off it he would be in big trouble. He sleeps most of time and only gets up to eat. He doesn't talk much anymore and is very confused and doesn't understand very much. They won't give him Chemo. Because they say there is no proof that it helps the elderly he is 72yrs.old
and it would only make him sicker. I would be interested in Homeopathic remedy. Like your husband he does not like vegetables very much. His tumor is on the left side of his head which is where the language memory is. He can't read anymore because he doesn't see the whole letter just a part of it. It is hard to watch someone go through this terrible illness.
Good luck to you and your husband. buffyt@rogers.com

All the best
Nancy

2006 mainewife
Posts: 3
Joined: Sep 2008

My heart goes out to you I know what you are going through. My husband was dx'd March 27 2007 he was also operated and they did not get it all he had radiation and was on chemo the pill form for 6 months came off chemo Dec 8th 2007 and was fine up till Sept 2008 he was having a hard time talking seeing and was confused alot he went for a MRI as planed every 3 months and that came back not good he was to have a biopsy Oct7 2008 but that was canceled that day they did another MRI the day before and found that it was cancer and said there was two more he has three now not good one is on his left side also they sent him home he has gone down hill since then he also can not read he was a reader and is in a wheel chair now. Yes it is a terrible illness and hard to watch someone go through this . Just stay strong I know it is hard. Good luck bobbiesue@tdstelme.net

Hang In there
Susan

buffyt
Posts: 2
Joined: Sep 2008

Hi Susan,

Thank you for your words of encouragement. Some days it's hard to be strong but what choice do we have. I feel that the doctor's have already given up in him. I'm meeting with his nurse on Mon. to see where we can go from here. He's scheduled for a MRI in Jan.'09. I guess we'll just have to wait and see what it shows. I find the doctor's don't seem to want to tell me to much in front of him and I also don't think he understands what is going on.

Talk to you later
Nancy

JackiesGirl
Posts: 2
Joined: Apr 2009

My mother is 70 years old and was diagnoised with Glioblastoma brain tumor on Dec. 13, 2008. They did surgery on the Dec.17, and two weeks later she started Temodar (low dosage) and also began radiation. She did 35 radiation treatments. In the beginning of March, she started to become weak, confused, having trouble walking, etc..They took her off of her steroids and the next week, she could hardly move. Then she started acting strang. I called the doctor and he said to bring her in the next day for an MRI. While my mom, me, and my stepdad were in the waiting room, waiting for her to be called back for her MRI, she kept telling me she felt odd, and I tried to comfort her and all of a sudden, she had a full blown grand mal seizure right in my arms with me screaming and crying for my stepdad to get help. They took her immediately to the ER and found out that not only had she had a seizure, but her potassium was very low, she was 2 units low on blood and had to have a transfusion, and her leg had a blood clot that went all the way from the groin to her toes.She was in the hospital for a week, and while there, the oncologist told us that she only had 4 to 6 weeks left to live. She had to be taken home in an ambulance and is now having to use a hospital bed, a catheter, and is on oxygen.While in the hospital, they did the MRI and found that the tumor which had originally been 95% removed had grown back completely. So the radiation and chemotherapy did no good at all. We are now looking into taking her to the MD Anderson Cancer Clinic in Houston

v724510
Posts: 1
Joined: Mar 2009

My dad was diagnosed with Grade 4 Glioblastoma Multiforme 3 weeks ago. Its been a difficult time for the whole family. He had an operation and the doctors were able to remove 99% of the tumor. He is going to start Chemo and Radiation next week. He is 72 years old. I would really like to get in touch with some survivors. As well as people with experience with the cancer. The whole family has really come together but we are kind of at a loss at what to expect and are at the mercy of the doctors. Not that thats a bad thing but I know that there are successful options for him that the medical community hasn't excepted. Feel free to private message me or respond on the forum. Thanks

Matty
Posts: 21
Joined: Aug 2008

The first important part of recovery is to remove as much of the tumor as possible. It sounds
good that 99% was removed. I had a malignant brain tumor(ependymoma) in childhood, stage 4 with 95% removed during surgery.I had radiation to half of my brain. Diagnosed at age 4 and cancer survivor since, I am now 47 years old. Lots of love,

I could only begin to know what you are going through.

mebrumit
Posts: 1
Joined: Apr 2009

My brother was diagnosed with a high grade glioblastoma on November 27, 2009 at the age of 44. He had surgery the day after Thanksgiving. He had 3 tumors, two of which were removed, and a third that was too deep to get to. He then completed radiation and then was prescribed a chemo drug called Temodar. He responded well to the treatment, but in early March, the headaches returned, he became more confused and lost a lot of balance. The tumor that was left had grown bigger and two others grew back in the same area the first two were removed from. We saw a brain tumor specialist this wee at Emory in Atlanta, GA and he scheduled a second surgery for next week. Does anyone have experience with a second surgery and what happens afterward? Thanks.

sweber04
Posts: 1
Joined: Apr 2009

Hi,.
My sister, age 56, was recently diagnosed with grade 4 Glioblastoma. Hers is inoperable because of its location. She started radiation and Temodar this past Wed. and is not doing well. I just left her at the ER due to the inability to feel her legs and pain in the same area. They took a CT scan and it seems that the tumor has grown since it was first diagnosed one month ago. They are moving her to another larger hospital tonight because they are concerned with how fast it has grown. For us, things are not looking that good. Good luck with your brother.

momatabor's picture
momatabor
Posts: 10
Joined: Nov 2007

hi my brother has gbm stage 4 he is two years out of treatment and is doing great, he takes temadar every month for 5 days, and multi meds for seizures, but it seems to control them very well. he had surgery & rad but they could not remove all the tumor and it has not grown for 2 years thank god the only advice i can give is to be there for him and i know its not easy but keep a since of humor and give thanks for each and every day u have gob bless you all,you can read more about my brother at gary43 and if i can help in any way please contact me god bless

Toshy's picture
Toshy
Posts: 23
Joined: Jul 2010

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.

EDClarke
Posts: 5
Joined: Aug 2011

Please share any info you may have! We can be reached at KAC_Warrior@yahoo.com. My husband has a GBMlevel IV and we are looking for any insight that survivors may have!

Diamondhorse_1
Posts: 1
Joined: Nov 2010

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

sjonesleo
Posts: 2
Joined: Apr 2011

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 sjonesleo@comcast.net.

DJEvans
Posts: 3
Joined: Jul 2011

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 lilwhit83@gmail.com.

moonwitch's picture
moonwitch
Posts: 3
Joined: Sep 2012

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
Posts: 4
Joined: Aug 2011

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

fmkadem
Posts: 3
Joined: Nov 2012

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

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