What to expect - GBM

My husband, 55, was diagnosed with GBM in March 2012. It presented with a seizure (the only one he's ever had) and is located in the right temporal lobe. He did 6 weeks of radiation and Temodar, and we got terrific news on the follow up MRI. Not only was there no new growth, but the tumor shrunk! We are thrilled! He then began Avastin and takes Temodar the first 5 days of each cycle for the next year. He's taken Avastin twice now and will begin the second round of Temodar the end of the month. So far, he has tolerated this combo very well except for fatigue. He is on long term disability from a job and company he's been with for 23 years. He's unable to drive due to having had the seizure and still being on Keppra for that. Prior to GBM he was extremely active, still playing tournament softball, which he also can no longer due. Keeping his spirits up has been a challenge, but I'm trying! The reason for this, my first post, is to reach out to anyone else in our same boat. I am a two time breast cancer survivor myself, but this is my first experience with brain cancer. While I realize that everyone diagnosed with GBM can respond differently to the treatments, just wondering mainly if the fatigue is cumulative as the treatments continue. Or, really, just what to expect going forward. Any feedback will be most welcomed.

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Hi ! I to have grade four glioblastoma, diagnosed last year, April 2011 surgery was done and doctor thot it went really well, it was size of goose egg by time it came out. Had radiation and now on temodar, dr wants me to stay on this for a total of two years oh mercy me ! Been on it for fourteen months ! Now up to 290 mg on the cycle 5 days on 23 off. Just finished another one. I am extremely fatigued and experience a very high level of anxiety, no seisures but on prevention medication. Got the shingle and pink eye a while ago. All cured up. Now on prevention of shingle pillls, high dose every day. They won't let me drive but I truly honor that wouldn't want anything at all to go bad. I started out at much lower dose but doctor said more I can take better off I will be in the long haul of it. YES longer I am on it the more fatigued I get. I am 58, had three fusions in my neck so am disabled also. Also had non-hogkins lymphoma nearly three years ago, killed that of ! Happy to hear you are a survivor. You know after my cycle is over I find I am a little nausea and so tired so I get an infusion. I won't sit here and suffer, its about 3-4 days after I finish, maybe you could talk to your doctor about that. They give fluids, etc depending on your husbands own situtation as we know everyone is different !Any kinds of cancer sucks ! I think my brain is a mixed bowl of nuts !!!!!! ConcentrATION is hard and have to write notes all the time or I don't remember what I wanted to do !!!! Crazy stuff. I don't take avastin just temodar. Had brain MRI this week, see dr for results August 1, I get them every two months so we can keep a handle on it. Last scan in May showed no growth, great news. OK if you to know something else just let me know. Laugh, keep positive thots going and plan for the future !!!!!!!!!

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My husband was diagnosed in Jan 2010. He did radiation, Temodar and a trial,so maybe Avastin,but maybe not. He did not continue with Temodar after the first year. His Neuro oncologist said continuing was up tomy husband. He was totally wiped out while taking the doses, the further along he was. While he is easily fatigued, he is much better than he was with the side effects of Temodar.

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Hi ILDawn, Sorry that you have to join this group of brain tumor patients and caregivers. It is indeed a challenge that one does not understand until suddenly thrown into it as most of us were. My husband, now 60, was diagnosed May 2011, had a larger than baseball sized GBM in the right frontal lobe. He was fatigued before the diagnosis which was very unusual for him. After the craniotomy, followed by standard Temodar (concurrent with radiation, then higher doses for 6 cycles but had a lowered dose towards the end due to low platelets) and radiation he had better energy but as time has gone on he is more fatigued than ever. He is also on Keppra, but has not been on Avastin as his oncologist is waiting for regrowth before any further treatments. He has MRIs every two months, last one in June was stable, but the fatigue continues to worsen. He is also much more quiet and withdrawn, but has a quick temper and impulsive bursts of anger when frustrated. His doctors cannot find any other reason for the fatigue. I'm assuming it is delayed effects from the radiation as such a large part of his brain was radiated, as well as the frontal lobe location causing personality changes. He is now trying ADD meds, Ritalin didn't work, now on low dose Adderall, but I'm not seeing much of a difference. His balance is worsening again. I would have thought he had massive regrowth if the recent MRI wasn't so stable (and I was sitting in the radiology room watching the scan as it was taken so I know the reading was accurate). So hang in there with this dreadful disease. As a breast cancer survivor you know diet and exercise are helpful in combatting fatigue. We are strong in our faith and know that the Lord's will will be done and have accepted whatever He choses for our lives. We are powerless to change His will. But, we pray for the cure, we pray that others come to know the Lord through our experience and we pray for all people going through this horrific battle fighting it in whatever way they find comforting.

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Hi ILDawn this is Ty Andreas' wife. he can't use the computer very well right now. Check out his site "GBM Related" in the discussions. I've gotten some good feed back from lots of people. Andreas also has it in the Rt temporal lobe and is currently on avastin for the past 7 months. He is 46 and was very active and no symptoms until the seizure in 2011. Life has been pretty crazy ever since. I've been down this road for 16 months now so I will help if i can. If you are in IL I am too and so are a coule of other people on his site. I will help where I can. All the best, Ty

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Hi ILDawn,
I'm also in IL, about 40 miles west of Chicago. My husband has GBM IV, diagnosed from his first ever seizure on 12.7.11. He had surgery that removed 100% of tumor, then the chemo/radiation. He is on cycle 4 of Temodar 5 days/23 off. He is also on another chemo pill that is part of a clinical trail, Vorinistat (SAHA). The trial drug is now 7 days on, 7 days off throughout the month. Fatigue hasn't been a huge issue for Dennis. He does take a nap in the evening or late afternoon if he sits in front of the TV. He has been back to full time work since 5/23. He was just able to resume driving in early June and it's going great. Dennis is 46, was also very active with running & cycling before GBM. He had bigger issues with fatigue from the radiation. Now for exercise we are walking every morning for 30-60 minutes. He has been doing a little swimming with our daughter and riding his bike when it isn't 100 degrees. Ten days ago, another cyclist crashed into him on the bike trail and broke a bone in his left wrist. He is now in a splint for an unknown number of weeks. His tumor was in the rt temporal lobe, near the vision center and motor strip. His only deficit from surgery was a cut in his peripheral vision on the left side. It seems that will be permanent. He has been having monthly MRIs because of a suspicious spot adjacent to the tumor cavity. They believe it is just due to the radiation. It hasn't grown or changed. All his treatment other than surgery has been at Mayo Clinic in Rochester, MN. Now we go to Mayo once a month for follow up and to pick up his chemo drugs. August will be his first follow up visit without an MRI. He is so glad.
His biggest problem has been the effect on his blood counts. His platelets drop significantly, as soon as he takes his first Temodar pill. With the 5 day cycle, his platelets usually drop into the low 70s. During the 6 week radiation & chemo treatment, his platelets repeatedly dropped to 11 (thousand). He had 7 platelet transfusions over about 2 weeks. Also, his neutraphils (part of white blood cells) dropped until they were "too few to count." He was severely neutrapenic (below 0.5), had to wear a mask all the time, be super careful about sanitizing everything. As we're in the monthly cycle of treatment, his ANC (absolute neutraphil count) was too low and he had to delay his next round of chemo by about 3 weeks. His level was around 1.2 and had to be above 1.5 to resume treatment. He just finally hit the right numbers 10 days ago and is on day 5 of cycle 4. I'd be happy to talk with you. It seems like we're in very similar points in this journey.
Becky

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I appreciate all who have replied so far. It helps knowing we're in similar situations. I think with the IL in front of my name...it appears I am in Illinois. IL are actually my middle and last initial. Someone beat me to my first user name. We are actually in Orlando, FL working with Florida Hospital Cancer Center here. It has been a juggling act scheduling his appointments around my work schedule...but I am very grateful that my company has been extremely supportive of this. We have lived here quite awhile, so we are fortunate to have friends and family around who can help with a ride once in awhile when I'm not able to.

So far his labs have been normal so we're on an every other Monday schedule for the Avastin via his port. And every other Thursday prior to Monday for lab work. I've only noticed his fatigue so far. He's recently started with a runny nose and sneezing. But that may not have anything to do with anything. He's very good about keeping sanitized, etc. I think the loss of freedom in not being able to drive, work or play ball weighs on him the most. Taking care of things around the house just puts him over the top with the fatigue. So, it's been a challenge for us both. But each day is a new day and one we'll not get back. Thanks for reaching out...all of you.

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Hello,

My husband will be starting Avastin on Monday, July 30th. We have been fighting this tumor for 4.5 years. He has had surgery (doc said it was inoperable - he was wrong!) After surgery he did 30 treatments of radiation and then I forget how long he was on Temodar - I think it was a year. For 3.5 years we were tumor free! This past January it resurfaced. He had sterotactic surgery and went back on Temodar for five months and now the MRI shows progression. But before that progression we went to Chicago for the Novo TTF device. He has been on this device since May 17th. However, since the tumor has progressed we feel inclined to start the Avastin. Can't have enough tools in the tool box to fight this stubborn tumor. This is a journey and believe it or not it is a blessed one. This cancer has brought us closer to the Lord. Without this trial and tribulation we would have never known what a wonderful Lord and Saviour we have. I know He will use anything to get our attention and save us from eternal death. Praise Him!

May you have peace and blessings through our Lord Jesus!

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Hi Southernstyle, I will be praying for your husband starting the Avastin next week. Thank you for letting everyone know how the Lord has been with you throughout this journey. I don't know how anyone can deal with the stress of a GBM diagnosis and treatments without knowing Jesus. We have so much peace and even joy. May you continue to experience his comfort, peace, and blessing in this new phase of the cancer journey. Thanks for letting your light shine before men...
Becky

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Thank you very much for your reply and your prayers! My husband's name is Frankie. We would like to pray for your husband - what is his name?

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His name is Dennis. Thanks!

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Southernstyle, Good luck to Frankie. I hope he has the success wih avastin that Andreas had with it in the beginning. It didn't have such harsh side effects and was easier for him to tolerate. After thinking I was going to lose him in December because things were so bad, he got better. We had a few months that weren't so hard and I was glad for that. I've read on this site several people who have been on avastin fairly long term and seem to be doing well. Unfortunately, for Andreas, we got 7 months before it started to take it's toll, but they were months we might not have gotten without it. Bless you both. Ty

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We are in the same boat as my wife was diagnosed with GBM in early May. Our problems were with complications after surgery, as she had multiple seizures, and then an infection. Her right side was nearly paralyzed, stroke like symptoms. We went through radiation, first cycle of temodar, and start second cycle next week. Had post radiation MRI on July 10, but oncologist said not to look too much into the first one as radiation is still working. My worry now is for the last two days, my wife has seemed fatigued, a bit disoriented, and her right side seems weak again. I hope it isn't seizures popping up again. She is on Keppra and Vimpat. Anyone who could help with some advice on the right side weakness, or the lack of a response to the first MRI, please share your input.

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Hello Cliffclavin,
My husband's radiation oncologist explained that the first MRI post surgery and radiation was a new baseline. She wouldn't even do one until 3 momths post radiation, but with worsening symptoms an MRI was done a month after finishing 30 cycles of radiation. It showed the large tumor area mass but was fluid filled. Nature abhors a vacuum.
There is much edema after surgery and radiation which limits the findings on MRI. Best to go by symptoms rather than MRI. I would be most concerned about the disorientation and suggest a quick call to her radiation oncologist if he/she is not aware of your wife's symptoms. Fatigue is the most common side effect of radiation. Most important right now is the dosing of decadron to manage the edema. I'm guessing the right sideed weakness may be aggravated with more post radiation edema. How often are you seeing the radiation oncologist? My husband was seen weekly and more often if he had any symptoms. Don't be afraid to place a call to oncologist with any concerns. If your rad onc is anything like ours, they wanted us to call with any unexpected symptoms. Best wishes to you both on this challenging journey.

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Ildawn..I'm so sorry you are going through this..it sure does suck..my dad was diagnosed march 2012 and underwent a crainatomy followed by just Temador. He was too weak to hand radiation. He is 82 but was in suchbGREAT physical condition before this so they felt that the radiation would only weaken him more. As far as fatigue goes he is extremely fatigued father the round of Temador which he is on for 5 days then off for 23. He is on 350 mg and yes this is accumulative in the body as far as fatigue goes. Does your husband co,plain about being dizzy or light headed ever? This is one of my dad biggest complaints with absolutely no answers. I wish you all the luck and my prayers are with you and your husband to have to be in this situation. Cancer sure dies SUCK!,!,

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Jlevin, agree that cancer sucks! My husband starts his 2nd round of Temodar, 350 mg. tonight for 5 days. Tomorrow will be his 3rd Avastin via the port. He hasn't complained of being light headed or dizzy really. Just an occasional head-ache in the area of the tumor (craniotomy). He tires more than he used to, ofcourse. I think it's the loss of independence that is getting to him the most. Since he's still on Keppra he's not able to drive, although he'll back his truck out of the drive way into the cul-de-sac once in awhile. He's going to visit with family at the beach for a week...I just hope he feels up to it. It will be nice for him to get away and do his "normal" things like fishing, etc. and spend some time with his sister/brother/niece/nephew/great nephews. I am not able to go with him as I am working, but I will welcome a this little break myself. I hope things improve with your Dad. Will add you to my good thoughts and prayers.

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Thank you golfwife. It is just strange how things went south in the last few days. But since the last MRI, the oncologist has tried to cut down on the decadron, as my wife has been on it for two months. Trying to get appointment with neuro-oncologist tommorrow or next day to try and figure out what is happening. It has been two and a half months since surgery, radiation, and chemo, I am hoping the tumor isn't growing that fast to cause these problems!! If it is post radiation edema, then hopefully we can right this ship and get things a little more back to normal.

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Cliffclavin,

My husband experienced the same problem with an attempt to lower the dexamethasone. He finished radiation mid July last year, had non-contrast MRI in August due to headaches, where the fluid filled mass was seen. A month later with decadron weaning he had a seizure, was falling again, and had another MRI where they deemed it as massive regrowth. The decadron was increased from 1 mg to 16 mg. After consulting at Hopkins for more surgery, they thought he had pseudoprogression. MRI was repeated again a few weeks later. The massive edema and tumor was much improved. He has not been able to get off decadron since. Still trying a VERY slow taper. Still with profound fatigue, balance issues but no headaches.

Is it feasible for you to put a call into the oncologist on call to ask about increasing the steroids until she can be seen? Or perhaps, resume her previous dose before symptoms began? As I am a nurse practitioner, I adjust my husband's steroids as needed, with the blessing of his medical team. The benefits of temporarily increasing the dose far outweighs the risks from cerebral edema.

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To golfwife:
I will give call to oncologist on call to see if I can upgrade Decadron for few days, until we see neuro-oncologist. I am not very intelligent with medical terms, what is cerebral edema?

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Cliffclavin
Cerebral edema is swelling in the brain

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Clifclavin, Andreas had SERIOUS problems with edema after radiation and then they tried to wean him off the steroids. It was awful when they just lowered the dose by 2 mg. So they kept him on Decradon at 8mg a day. Then they tried to lower the dose again and he went over the top with seizures. Now the edema was so bad he had a midline shift. Seizures were almost uncontrolable and he was back in the hospital. OK == so they upped the Decradon to 12mg, then 16mg and things began to change. (This is an extreme dose and is contoversial but they were getting nowhere with what was in the range and I had been reading about this technique and pushed to try it and they agreed because what they were doing wasn't working) Seizures slowed down and Andreas felt a little better. We still couldn't completely stop the seizures because of the swelling which would not go down. Everyone was baffled. They kept him at 16 only a short time, then back to 12 then 10 ( he was back home now and was functioning and but still had small seizures) then 8mg this lasted for a while - but when we tried to go to 6 it started all over again and the seizures instantly geared up again. He was having so much trouble with the edema , the tumor wasn't doing anything. The chemotherapy seemed to be holdng it at bay but nothing was working on the edema and they could not stop the seizures competely. This went on for 6 months.
Finally, at Christmas I thought I was going to lose him or lose my mind trying to take care of him I didn't know which would come first. So after a severe episode with seizures that put him back in the hospital they started IV decradon at 24mg then 32mg then back to 24 and he began to change, a new specialist visiting the hospital from Switzerland was stepping into his case, the edema had gone down in the past 3 months but not completely. After a week in the hospital with the IV's he went back to pill form at 8mg and the new Dr. stopped the chemo and put him on Avastin. We added toppamate into the seizure meds and Andreas has not had a seizure in 7 months. It has taken us 7 months to get him to 4mg of decradon a day.
So what I'm trying to say is in his case massive doses of this stuff actually helped him. The Dr's didn't want to do it but I pushed the first time and the Swiss specialist did it the second time and it worked. Some people just have more problems caused by the radiation than others and the decradon has it's side effects it's true but in Andreas' case it has helped. He is still taking 4 mg a day and he's 16 months with GBM4.
Now we are having trouble with the Avastin but I'm hoping that taking him of it for a while will help. The Dr is not optimistic but Andreas and I have gotten past a few Dr's along this journey and what we tried worked. I'm praying the damn tumor will just stay asleep.
Just wanted you to see someones elses experience with dexamethasone and maybe it will help you get something done or to see things a different way. All the best to you, Ty & Andreas

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