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2 months since GBM diagnosis, Going on third surgery

mafaldas
Posts: 21
Joined: Mar 2010

Hello everyone.

My mother was recently diagnosed with GBM. She underwent a craniotomy to resect two tumors on January 20. Following an an amazingly-fast regrowth of one of the tumors, she underwent a second craniotomy on January 29. She has recovered from her surgeries very well, and she was slated to start radiation therapy/temodar next Tuesday.

Nevertheless, her radiation oncologist called on Friday, informing us that an MRI showed the tumors had grown again and that radiation/chemotherapy might not do much. He raised the possibility of a third craniotomy, but I am worried that before we get to radio/chemo, the tumor will have grown back again. She will also begin to wear away psychologically and physically if the only way to control the tumor is to perform a craniotomy every two months.

Is there anyone else out there who has undergone three craniotomies in two months? Is this the calling card of a particular horrible GBM tumor? What else can be done?

I adore my mom. She killed herself to educate me, to give me the best, to give me a great life. And I cannot do anything for her. And, the doctors have still not explained to her what GBM is. (She lives in a developing nation, where keeping patients informed is not a high priority.) It kills me everytime she tells me to cheer up because she knows she will recover completely from this.

Good luck to everyone.

danielgharper's picture
danielgharper
Posts: 13
Joined: Apr 2010

I was diagnosed with a glioblastoma in 2007. I had surgery, did the standard 6 weeks of radiation and temodar, then did 6 more months of chemo through Duke University in N.C. I was cancer free and symptom free for 2.5 years, until January, 2010. Since then, I've had 6 seizures, 2 MRIs, 1 P.E.T. scan, 5 visits with oncologists, a radiologist, a neurologist, and a neuro-oncologist in Las Vegas, Salt Lake City, and at UCSF in San Fran. All of these doctors who all gave me different suggestions and treatment plans. I listened to none of them except my neuro-oncologist, who kindly gave me 1.25 hours of his time to show me on the MRIs why it was obvious my cancer had returned. My neurologist said it hadn't returned, and my primary oncologist hasn't called me since I got an MRI he ordered or since surgery.

God bless, danielgharper

cherylsauke
Posts: 2
Joined: Apr 2010

Find the neuro-oncologist you are most comfortable with and do as suggested. A neurologist at one of the most well-known medical faciities in the midwest, told me there were no more tests they could do so not to return until I lost consciousness. I went elsewhere and within an hour the /MRI had located the tumor, and the rest is history as they say.

Petjea65
Posts: 2
Joined: Apr 2010

my daughter was diagnosed with GBM Oct 26,2009...She had 2 surgeries, radiation and a new chmeo drug called Tarceva which hasn't worked as there are now 4 more tumors. We are trying another surgery and wonder what people think about using Temodar plus Avastin as the neuro oncologist said he is open to anything we want at this point. The surgeon said he could get out most of all tumors and would have to leave 2 the size of gumballs.

ryan1975
Posts: 2
Joined: May 2010

Daniel,

Looking for any suggestions/help for my father-in-law who had 3cm tumor (98% removed) last week. You said you were in SLC...my father in law is at the U of U recovering and they want to start radiation/chemo asap. Unfortunately his recovery from the cranio has been hard. I was wondering who you spoke with in SLC and what did you neuro-oncologist suggest? I will be re-visiting my father-in-law this weekend and haven't spoken with any of the doctors, but I wanted to know if there was anything you did to remain symptom free for 2.5 years? From the stats I have seen, that is a better than average survival rate. Any suggestions/ideas would be great. Also, any advice for family members? Thank you for taking time to read this and good luck with your battle against GBM.

Ryan Leith

cherylsauke
Posts: 2
Joined: Apr 2010

I was diagnosed with GBM and underwent surgery in July 2009. Following surgery, I also had a 6-week course of radiation concommittantly with Temodar. After that, I have been taking temodar 5 days per month, off 23, them on for 5 days. My most recent MRI shows that there has been no tumor regrowth. I will probably be on the temodar through December but so far it is controlling the GBM.

I think along with the therapy controlling the regrowth I am told maintaining a positive attitude and getting sufficient rest are essential. I never thought a person could sleep as much as I do, I feel tired all the time but they tell me that the rest helps the brain heal itself. I have found it helps tremendously if my support system (family, friends) stay positive and upbeat. But yes, I am proof that your mother can beat this thing!! Realistically I know I will always carry this diagnosis, but just like hypertension and/or diabetes, it never goes away, you just continue to treat it and live with it.

Did she have any motor function deficits after her surgery? I've lost use of my left hand, drag my left foot when I am tired and my speech slurs when fatigue set in.

mafaldas
Posts: 21
Joined: Mar 2010

cherylsauke,

I am glad you are doing well and that you have kept the tumor at bay for almost a year. :)

I am feeling much more upbeat. My mother did indescribably well during chemo and radiation. She finishes on Wednesday, and except for some mild (and, we hope, temporary) hearing loss, she experienced no problems. No fatigue. No nausea. No loss of appetite. She looks fantastically well, and the we all agree that the wig is cuter than her previous haircut.

Fortunately, she had no deficits going into treatment. Nevertheless, she began her treatment in a frail emotional state, since she found a few days before treatment that glioblastoma is more aggressive then she thought.

She is very strong-willed, and she also was in excellent health before her diagnosis. She ate healthy; she worked out an hour or two each day; she enjoyed her job. I also think it has helped that she has been surrounded by a supportive (if not always well-informed) network of friends and family members. Finally, I think it also helped that I informed myself really well about her condition, her limits. And, then I pushed her and insisted that she not convince herself that she was disabled.

She has kept working out every day for about an hour. She hosted dinner parties at home and took weekend trips to the beach. She attended concerts and parties. She is still as funny and crazy as ever. (And, maybe that has helped, too. My mom has been a bit flighty all her life, and so we don't know if any cognitive problems are her normal personality, the tumor, or the treatment.

I know I cannot get carried away, that we have done what we could for now. That the ball is in the tumor's court. But, thankfully, we have had a good six weeks, at least.

I have been actually meaning to post this so others could read it. There are cases where treatment is fairly free of complications, where life can go on without major problems, without major sadness during treatment. I was very scared of what would happen to my mom during treatment. But, in the end, my fears were misplaced.

Good luck to you, and I hope you continue to stay well.

kookamakie
Posts: 1
Joined: May 2010

My father had his surgery last september.

His only symptoms leading up to his diagnosis was a tingling sensation in his left arm... until one day my sister noticed his thong had fallen off about 15 steps ago on our gravel driveway and he didn't realize it because his foot was numb.... We sent him that same day to the local e.r. and he was in surgery 4 days later. Right after surgery he was fine, in the ICU for monitoring and all functions normal. It appeared the swelling had set in over night and when he woke up he could no longer lift his left arm, leg and side of face. It was as thought he had a stroke. He stayed in the hospital for 10 days and from there he was transfered to a sister hospital where he was admitted as an IN patient physical rehab for another 4 weeks of intensive physical therapy. During this time he regained most of the use in his left side, walking again and his smile came back too. While we were still in P.T. they started the radiation treatments as well as chemo (temodor) after his treatments were complete we went off to heal as a family and he was fine, a little tired and still suffered from some deficits, but nothing like right after surgery. I thought they had simply taken out too much... but it turns out most of it did come from the swelling... we will never know how much to expect him to get back as we dont know how much was lost prior to his diagnosis. I have not met anyone else with the gbm, nor have I heard of anyone with the left side deficits. Yours sound very similar to what we are going through. I know what you mean about the slurs in the speech with fatigue and all of the other stuff that comes along with it...

To sum it up, we just had a MRI and all came back fine. The drugs seem to be working and our spirits are up too... I hope to hear a little more about your experience. This is my first time logging on here, I usually just browse stories... but your mention spiked an interest.

If you don't mind I would like to know a little more about you, age, what your first symptoms were and whatever else you would like to share.
thanks for listening to me here,
lisa

katru26
Posts: 1
Joined: May 2010

I know what you are going through. My father was diagnosed on April 14th, 2010. He underwent his first awake craniotomy on April 26th. His personality and left side motor skills had suffered after surgery. Exactly 2 weeks later on May 10th we had my dad life flighted to the original hospital to undergo a 2nd craniotomy to remove the tumor which had grown very rapidly. He also had hydrocephlus (fluid on the brain and his brain had swelled again). He is now doing better than before only 1 week out of surgery. His personality is back but still suffers some on his left side. We are so scared because the doctors say it is very aggressive and don't give him much time. He starts radiation next monday along w/ Temador Chemo. Has anyone experienced this aggressive of a tumor and survived longer than a year?

mafaldas
Posts: 21
Joined: Mar 2010

katru26:

Hello. I am the original poster. My mom has not been around for a year, so I cannot answer your question. She, like your father, has an incredibly aggressive tumor. One of family doctors had given her as little as two months. But, four months later, she is still here.

I did want to share with you, however, that treatment was a walk in the park for all of us. The only side effect she had was some hearing loss... and that is starting to get better now. She continued working out and going out during treatment. She even hosted out-of-town visitors who came in to see her and accompanied them on tours of the city, to restaurants, etc... I guess my point is, neither one of us knows how long our parents will live. But, I can tell you that despite the tumor's aggressiveness, there can still be quality time left.

Good luck to your family.

Sean72409
Posts: 1
Joined: Jul 2010

Hi, I was diagnosed with GBM on July 24, 2009 at age 49 after having a seizure during a morning workout routine. I had successful tumor resection two days later, then did the six-week Temodar plus radiation course from Aug. 20 to Oct. 1. The doctors were pleased with my response and said my prognosis looked good because my tumor had a genetic profile favorable to treatment. I moved to a maintenance program with Temodar taken 5 days out of 28 and bi-monthly MRI scans. The scans stayed mostly clean, except for an enhanced area of necrosis around the tumor cavity. Then in mid-May of 2010, my scan showed a slight change in the enhanced area. This led to a vigorous disagreement among my treatment team about how to respond. My neuro-oncologist wanted to treat it with radiosurgery and a switchup in my chemo regime, but he was voted down 5-1 by the hospital's "tumor board," which recommended a second surgery. I followed that recommendation and had my second surgery June 2, 2010, in which the neurosurgeon said he succesfully removed everything he could see. The post-surgery pathology reported that most of the enhancement area was scar tissue and there wasn't even enough tumor to do a meaningful analysis. I started a new pill-form chemo program (Xeloda plus Celebrex). A June 30 scan showed a smaller-than-a-dime sized enhancement at the edge of the surgical cavity. Doctors thought it might just be a small abrasion from surgery. But a scan just yesterday (July 30) showed it has doubled in size and may be recurrent tumor. So now I'm probably looking at another chemo switchup (maybe to IV) and maybe even yet another surgery. I won't know until I see the docs again on Tuesday. Physically I feel fine and have no symptoms, and feel blessed to have survived this grim diagnosis for one year and one week as of today. I send all of you and your family members my blessings and best wishes, and advice you that keeping a positive attitude is extremely important. Do not despair no matter how bad things look. Living in despair, I think, is actually worse than dying. So do whatever you can for yourself or your family members to STAY STRONG.
Sorry for rambling so long. I have kept a blog with my full GBM story (medical and treatment aspects, the costs, the support I've received from family and friends, my efforts to keep up my sense of humor) at http://seanholton.wordpress.com. Feel free to check it out and look for anything that might be helpful or give you inspiration. It will be my way of returning the favor for your valuable comments and inspiration here.

marciap
Posts: 1
Joined: Nov 2011

Dear Sean, I read your post today and pray that you are doing well. My husband, an airline pilot, was diagnosed with gbm in April 2008. He did so well for almost 2 years. No recurrence first year, cycled a rode bike in 40-50 mile races, drove his car, life is good. Sadly for him, he could not fly airplanes. His life was flying and it was difficult for him to deal with less than perfect body. Wondering, how are you? My husband's tumor recurred 2 years later and he died last October 2010. I hope and pray you are doing well.

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