Glioblastoma Multiforme (grade 4)

nancys
nancys Member Posts: 323
edited March 2014 in Brain Cancer #1
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
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Comments

  • My son at 7 1/2 months was found to have a tumor on his spinal cord with that and anaplastic oligodendroglioma plus several more cancer cells that would take too long to type. He has done fairly well on treatment of chemo and is now on maintenance chemo to hold off radiation as long as possible. They want to wait until he is at least three a year and a half from now and 8 months after chemo is over next July. His tumor has not grown so far so very good. God bless your brother. Reach me at [email protected]
  • unknown said:

    My son at 7 1/2 months was found to have a tumor on his spinal cord with that and anaplastic oligodendroglioma plus several more cancer cells that would take too long to type. He has done fairly well on treatment of chemo and is now on maintenance chemo to hold off radiation as long as possible. They want to wait until he is at least three a year and a half from now and 8 months after chemo is over next July. His tumor has not grown so far so very good. God bless your brother. Reach me at [email protected]

    This comment has been removed by the Moderator
  • This comment has been removed by the Moderator
  • girl
    girl Member Posts: 1
    unknown said:

    This comment has been removed by the Moderator

    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
    nancys Member Posts: 323
    girl said:

    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

    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 [email protected] if it is easier. Thank you again for replying..Your friend, Nancy
  • loulou
    loulou Member Posts: 65
    nancys said:

    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 [email protected] if it is easier. Thank you again for replying..Your friend, Nancy

    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
    nancys Member Posts: 323
    loulou said:

    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

    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 [email protected] if you would rather use that. Please keep in touch. Your Friend, Nancy
  • mego
    mego Member Posts: 1
    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
    nancys Member Posts: 323
    mego said:

    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.

    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
    delmedico Member Posts: 1
    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
    daverichman Member Posts: 2
    delmedico said:

    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.

    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
  • lisancarl
    lisancarl Member Posts: 4
    unknown said:

    This comment has been removed by the Moderator

    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 [email protected] 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
    morrxs Member Posts: 6
    unknown said:

    This comment has been removed by the Moderator

    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).
  • cooldad
    cooldad Member Posts: 2
    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
    slojo Member Posts: 1
    cooldad said:

    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.

    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
    bevn Member Posts: 2
    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
    fcheshir Member Posts: 4
    bevn said:

    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.

    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 [email protected]

    Thank you!
    Fred
  • orville
    orville Member Posts: 3
    nancys said:

    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 [email protected] if it is easier. Thank you again for replying..Your friend, Nancy

    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.
  • stevegbm49
    stevegbm49 Member Posts: 3
    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.
  • kiki123
    kiki123 Member Posts: 1
    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