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Glioblastoma grade IV

TomK's picture
TomK
Posts: 10
Joined: Oct 2010

Hi all had the tumor removed at the end of Sept-just started the Tamodar and radiation this week. I've been back to work for almost two weeks. Have some mood issues with the steroid and maybe the Tamodar. Around three I really get tired. Any suggestion? for managing the workday?

dsharlee
Posts: 11
Joined: Dec 2009

Tom, many of us can relate. The best thing to do is talk with your employer and arrange to shorten your days and take naps in the afternoon - seriously!

As for the mood swings, that is the decadron (or other steroid), keep your radiation oncologist posted and let him/her know if it gets severe so that your dosage can be adjusted. Moderate mood swings, difficulty sleeping and weight gain are all due to the steroids, but the steroids are very important post op and during radiation therapy.

Good luck!

Debbie

TomK's picture
TomK
Posts: 10
Joined: Oct 2010

Thanks this steroid has really been a trip-on and off since June. I enjoy the energy but the mood swings can be a real problem at times. I think the kepra is what is messing with my concentration and balance at times. And then I have no idea what the chemo and radiation is doing.

My workplace is not a nap kind of place-the best I can do is run down to Starbucks around 3 :) if it get really bad there is a part-time disability program with would allow me to work half days. so I could roll in for the afternoon.

summerjones
Posts: 3
Joined: Oct 2010

My wife titatrated off the decadron for three weeks after her gbm surgery, and then began radiation and chemo. The steroid made her crazy but she improved dramatically when it was out of her system; the radiation made her tired. Only advise is to listen to your body and try for very short naps, even 5 minutes at a time are helpful.

TomK's picture
TomK
Posts: 10
Joined: Oct 2010

Well waiting for the next shoe to drop so far all the Drs say things look great I have to wait for January for another CAT scan before we have another look under the hood. I am glad that the treatment has stopped for the moment but on the other hand I would like to be doing something that would be positive for my prognosis but their doesn't seem to be much I can do but stay as healthy as I can and not get worn down. I have resumed a light weight training workout schedule which is going well and is good for my body and mental state (with Dr permission of course)

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Way to stay positive. My husband can relate to wanting to stay busy. He was able to return to teaching in January while he was on the 5-day of 28 cycle of Temodar. He'd come home from school and be wiped out, though. He truly saved up all his energy to teach. The summer break was a good time for him to rebound. Thankfully, he's now off the Temodar. He's now on Avastin once every two weeks. It seems to have very little side effects.

Have you considered speaking to your doctor about prescribing Ritalin? My husband went on it late during his treatment, but it made a stark improvement in his energy level. Wish we had realized sooner. He's off now, because he is just getting through steroid psychosis (2nd time). I am hopeful they will represcribe the Ritalin again in January. He surely didn't need Ritalin during steroid pyschosis! He talked non-stop for 9 hours one day, and this many is typically very quiet. High doses of steroids (Decadron and Predisone) do NOT agree with him. I suggest you "google" it and be aware how serious it could be. He did fine on low doses of steroids, and he had to have a 5-day Prednisone push Thanksgiving week for what they are suspecting is radiation necrosis on his optic chiasm. He's had vision loss because of it. (He has AAs, just a grade below your GBM.)

I hope you will have a great scan in January. Merry Christmas and a very happy and healthy, cancer-free 2011!

Shirley Lynn
Posts: 1
Joined: Sep 2011

My brother underwent surgery 2 weeks ago to remove a reoccuring glioma. He is experiencing some kind of intense pyscotic episode. What is your experience with this?

RLR
Posts: 36
Joined: Sep 2009

Hello Tom:
I am 56 and had a 7.5cm GBM grade 4 tumor removed on 1/13/09.I had the traditional 6 weeks of radiation and still on Temodar nearly 2 years later. I still have trouble making it through the afternoon without resting or taking a nap. I wanted to return to work and I think probably the biggest reason for not returning was the fatigue. I have been off work now for 2 years and looking back I am glad I didn't return mostly for this reason. I am doing very well,I am able to drive mow the lawn and most all things around the house. I even take 3 to 4 mile walks and even ride bikes when it's nice out side in N/W Ohio. The one thing that does't seem to go away for me is the fatigue.
Rick

Tiger729
Posts: 4
Joined: Nov 2010

The Dr. told us that we would be looking at about 9 months to 2 years if we were lucky. But of course anything is possible.

It sounds like you are doing great. What do the Docs say?

Sorry if I am being too direct but it sounds like you have been where he is now.

sfg1017
Posts: 5
Joined: Jan 2011

My husband was diagnosed on September 1, 2010 with a GBM in his right frontal lobe and underwent surgery on September 6, 2010 with total removal of the visible tumor. Never did any of his doctors give us any statistics about survival. We went to Duke and their tagline says "At Duke there is hope." My husband underwent 33 radiation treatments along with Temodar. Every other week he has an Avastin infusion. His first post radiation MRI on December 21st was totally clear. On January 7th he began his first cycle of oral chemo that he will remain on for at least 14 months. It's Temodar 300 mg for days 1-5 and 3 mg of topotecan for days 2-6. He is taking Zofran for nausea and it has worked; however, he has no appetite and he is very fatigued. He lost so much of his hair from the radiation that he shaved his head and he actually looks better. I have a comment and some questions for both you and the rest of the folks on this site. First, is your husband receiving treatment at a major medical center? The people at Duke were so reassuring to us and said if this protocol doesn't work, there are many more out there to try...always very upbeat. Now for my questions for those who have been at this longer than us: 1. How long did the side effects of the Temodar last after your last dose in the cycle? 2. Did your appetite return? 3. Has your fatigue improved? I would be lying if I said I wasn't scared. I just wish I knew what to expect. I guess no one really knows. We are taking it one day at a time...sometimes 5 min at a time. My heart goes out to each of you who is fighting this hideous disease and to your caretakers. New medicines are being developed every day, and who knows when we'll hear they have found a miracle drug for GBMs! Thank you for any and all responses.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Hi SFG.

I am glad your husband is being treated at Duke. We are, too. My husband had three AA tumors, which is a stage one lower than the GBM. He was diagnosed August 2009. He is now a second time brain cancer survivor, so we knew we needed to get to a place like Duke. He had 33 radiation treatments there (Oct-Dec '09), along with Temodar orally while taking radiation. They then upped his dosage of Temodar to about 450 mg 5x per month after radiation ended. He had 10 months of Temodar, which ended in October '10.

Fatigue was his biggest issue. Zofran was great! He always took one before each pill, no matter what. He never got sick all those 10 months on Temodar. While we lived in NC for the radiation treatments, he went back to teaching full-time January '10. He worked all through taking the chemo. He would come home drained, but he'd get to bed early, eat right (his appetite never was an issue, thankfully) and forge ahead to work. I thought he was remarkable.

His PET in October '10, showed no cancer cells. His three tumors were gone! We were celebrating when three weeks later he woke to vision loss all of a sudden. Now we're on a scary course of what they think is radiation necrosis in the optic chiasm. They tried a steroid push with him (steroid psychosis occurred for the second time, as he had a horrible reaction to Decadron after his brain biopsy in Sep '09). Then they put him on Avastin in Dec '10. Well, Duke said in rare cases Avastin can actually cause the necrosis to accelerate?! So, he has just one more Avastin Monday, an MRI here in GA tomorrow, another PET next Friday, and they are forging ahead with Hyperbaric Oxygen Therapy - HBOT, to try and save the vision. Scary part is (again) that high doses of oxygen can sometimes fuel tumors. We have to take that chance to save his vision. My husband is 45. What we've read said the risk for tumor regrowth is low, but it's the risk he's decided to take to hopefully have restored sight.

Do you live in the NC area? We're not too far outside of ATL, so we go up to Duke every two months, as we will for many years to come. Fortunately, we can do HBOT right here in our small town and we see a local onocologist. All direction for treatment comes from Duke, though, and we'll have it no other way. Dr. Peters is our doctor, and we absolutely love her. She answers my emails and spent an hour with us on our last appointment on December 30th. She truly, truly cares.

Back to your questions. Sorry. My husband's fatigue improved after he got off the Temodar. It was quite noticeable within a few weeks. He really isn't too fatigued by Avastin, but we expect that treatment to stop after Monday. I will tell you that they put him on Ritalin in October of last year (I think) to give him more energy, and it truly does help most days. I mean when you teach elementary, aren't you fatigued after the first hour no matter? :)

Appetite was not an issue, but with the Temodar, my husband gained as much as 30 pounds. From that peak, he's dropped 40. He feels so much better with that excess weight off.

Regarding side effects, well you see we've got the raw end of the stick with those. (He's also going for hearing aids Monday, because the first chemo he was on in 1987 did that damage - Cisplatin). That's easily corrected, so he's anxious to at least hear better again. Know these are not the norm, so don't let it scare you. While we'd be lying to say we weren't scared at the thought of him going blind, after beating brain cancer twice, we are hopeful this HBOT can work wonders, and the doctors believe it can reverse the damage by growing new blood vessels. We have faith, hope and try to have peace. It's hard not to jump ahead and worry, but your idea of taking things a day at a time (or 5 mins) is really the best way to approach this disease. Have a plan and act immediately when things present themselves, but don't worry about what you cannot control. (Now, I'll practice what I preach there.) :)

Please let us know how he does. From one caregiver to another, I feel your worry and heartache. Some days I feel it so much, I just want to stay under the covers. I haven't yet. We try to find humor in things as we would've before, but there's no doubt this disease will change everything about everything.

Kim

sfg1017
Posts: 5
Joined: Jan 2011

Thank you dear Kim for your prompt reply! Yes, we live in Raleigh, NC so we're very fortunate to be so close to Duke! The one thing that just tugged on my heartstrings were the people we met during my husband's treatment that were so far from home... away from family and friends...their support systems. Dr. Vredenburgh is my husband's oncologist and we have been so pleased. I've heard such wonderful things about Dr. Katie as well. Glad you all are with her. We went to a brain tumor advisory board dinner where one of her patients spoke about how she was at the finish line when he ran a marathon after his brain surgery! It was so sweet. She cares so much just like all the folks in the Preston Robert Tisch Brain Tumor Center at Duke. I will pray that your husband's vision will be saved/restored by the HBOT. Where in GA are you? So glad you can do your treatment at home.

I find it so hard to watch my husband go through all this. As much as I hate to admit it, I feel lonely in my own house. He doesn't talk about his concerns or worries...that's because he doesn't worry. I do enough of that for both of us! He goes to work each day and then comes home and collapses on the couch. Nothing appeals to him food wise, and that worries me because he is not eating much. He also needs to exercise, but he's not doing that either. Hopefully, the fatigue will lessen and he will become more active. Although I haven't just fallen completely apart about all of this, there are days when I feel so heavy with grief, I feel that it is difficult to even function. As I said in my original post, it's just not knowing what to expect that makes me crazy. I handle things much better when I know what's coming. Oh well. As awful as it is that there are many others suffering through the same thing, it does give me comfort to talk to another caregiver and to vent. I'm very grateful for a listening ear.

agarten
Posts: 1
Joined: Jun 2011

My Father was diagnosed with Glioblastoma grade IV in early May of this year. It came out of nowhere. I thought I was coming home (I live in the DC area) to introduce him to his first grandchild and ended up admitting to the hospital (WakeMed) and three days later he was having a golf-ball size tumor removed. After 4 wks in the hospital/rehab, he is now at home in Raleigh. His left side is impaired and his spirits are up and down. He began radiation/chemo overseen by Dr. Friedman (Duke), but stopped since he is so tired and depressed. We are encouraging him that he can do this, but it's not enough. I am trying to locate survivors in the Raleigh/Durham area willing to visit my Dad and show him that it's possible to fight.

sfg1017
Posts: 5
Joined: Jan 2011

Thank you dear Kim for your prompt reply! Yes, we live in Raleigh, NC so we're very fortunate to be so close to Duke! The one thing that just tugged on my heartstrings were the people we met during my husband's treatment that were so far from home... away from family and friends...their support systems. Dr. Vredenburgh is my husband's oncologist and we have been so pleased. I've heard such wonderful things about Dr. Katie as well. Glad you all are with her. We went to a brain tumor advisory board dinner where one of her patients spoke about how she was at the finish line when he ran a marathon after his brain surgery! It was so sweet. She cares so much just like all the folks in the Preston Robert Tisch Brain Tumor Center at Duke. I will pray that your husband's vision will be saved/restored by the HBOT. Where in GA are you? So glad you can do your treatment at home.

I find it so hard to watch my husband go through all this. As much as I hate to admit it, I feel lonely in my own house. He doesn't talk about his concerns or worries...that's because he doesn't worry. I do enough of that for both of us! He goes to work each day and then comes home and collapses on the couch. Nothing appeals to him food wise, and that worries me because he is not eating much. He also needs to exercise, but he's not doing that either. Hopefully, the fatigue will lessen and he will become more active. Although I haven't just fallen completely apart about all of this, there are days when I feel so heavy with grief, I feel that it is difficult to even function. As I said in my original post, it's just not knowing what to expect that makes me crazy. I handle things much better when I know what's coming. Oh well. As awful as it is that there are many others suffering through the same thing, it does give me comfort to talk to another caregiver and to vent. I'm very grateful for a listening ear.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

I am glad you are in Duke's backyard. I have grown to love the area, and my brother lives just over in Fuquay. So we have a great family visit each time we come with my 9 year-old niece. We had family visit when we had to live there for six weeks, so we didn't feel too alone in it all. The Duke radiation team and the oncology team is like family.

Dr. V. is aware of Landy's case, as Dr. P. was in Canada when hubby had the steroid reaction. I had the pleasure of speaking with him here. He was very nice. He told me the doctor here in ATL overseeing his vision issue is the best Nuero-Ophthalmologist in the world. I knew she must be good for him to say that! Dr. V. also consulted with Dr. P. Dec 30th when Landy's MRI puzzled her as to what it was. So, they definitely show a teamwork like no other I've had the pleasure of knowing.

I'm sure you've addressed the eating issues with them, but we do get our energy from food, so maybe a supplement like Ensure or such could at least help replace some of the nutrients he's not getting. Will he take vitamins? Does he have a demanding job? I know that fatigue is a big factor, as I watched it here for 10 months. I will say when summer break occurred, and although he was still on chemo, that additional rest allowed him to really rebound from the fatigue. Is your husband anywhere near retirement? Oh, that's a tough issue in and of itself. We've had to discuss retirement disability with my hubby. He doesn't have enough years to fully retire, and he wants to work as long as possible. If he didn't have the vision issue, I wouldn't even stress over that now!

I have no support groups near me, without driving to ATL, which is about an hour north. We live in Griffin, GA. It's just not feasible, so I encourage you to take advantage of that with other caregivers who are specifically dealing with family members with brain tumors. I think Duke has some support groups.

I am the worrier in the family, and I do like to have a plan of action. Sometimes with this disease you can plan and then you get a curveball. I've learn to just be prepared as best you can and act quickly! I've been amazed at how quickly most things have worked in our favor, and I trust this HBOT will do its job and make me proud to brag on the amazing therapy! :)

I've got to make our next two-month appt, and we typically go on Thursdays. I think we'll try to be there the first week in March. If you are around then, we must say hello.

Kim

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