Well since I have been kind of keeping this thread going and hoping some of what is in it might help someone else let me say that so far this round of Temodar had been a world of difference from the last. The nausea and stomach pain really never did get bad this time around. She has added a few new food items such as cereal in milk and tonight she ate a pork chop, mac and cheese and a few mixed veggies. She sees the doc and has an MRI next week so I guess we'll find out how much she will want to up the Temodar dosage.
In other news, a friend and a very well liked person from the town I was from had a stroke today at his job as a truck driver and he passed away this evening. He was able to pull the truck off to the side and stop before be collapsed. He was only in his late 40s so I guess it goes to show that none of us really know how much time we have left. He leaves behind a wife and a son in college. Perhaps we can all learn to appreciate our loved one's while they are here and before they are ill or injured. Any day could be our last or the last day for a friend, co worker, family member or even just an acquaintance.
I was just reading this thread and I can relate to what you and your girlfriend are going through. My husband had surgery in Aug. and did the radiation chemo thing too. He is going to start second round of temodar tomorrow at 400 mg for 5 days. To this point he has tolerated treatment well. no nausea, but his appetite is off the charts. He craves sweet things tho. He had MRI last week and there is some change for the worse. As his wife of 39 years and caregiver this is such a surreal life now. Unfortunately Duke had some brain damage from tumor prior to surgery. He knows what is going on but he has no emotional reaction to anything, in my opinion a blessing for him.
I want you all to know that I think about all of you every day and hope more effective treatment is found for you younger guys and girls. I'll stop rambling now, Joan
Thursday was Mri and Dr. day again. The MRI was still clear and the N.O. took the time to sit down and show us side by side comparisons of this MRI and older ones. Also finally got the addendum to the tumor pathology report and it does show the 1p19q deletions. The N.O. left the temodar dosage at 240mg and added a pill that coats the stomach to take right beforehand. Afterwards we went to the Superbowl village and walked until we thought our legs would fall off.
Last edited by Ken46130; 02-05-2012 at 02:57 AM.
Reason: oops had MIR for MRI :o
What time of the day is it better to take the pills?
I am unfortunately new to this forum.
I will introduce myself and my situation in another post, but for now I have a specific question.
My wife has been diagnosed with a GBM in October.
Following surgery and radiation + temodal, she is starting tomorrow her first cycle of 5/28 (with 240 mg, up from 140)
During the radiation + temodal she had limited side effects (some tiredness and hair loss). During that period, she was taking the pills in the evening, 3-4 hours after dinner (this was recommended by her NO to limit side effects).
From your experiences, is it better to take the pill in the evening or in the morning to limit side effects?
It is difficult for me to say anything to you all since words are powerless in this situation, I can just wish us all all the best in these difficult times.
Hi Cedric, sorry to hear about your wife. GBM can be
tough. with side effects. it sounds like your wife is having limited side effects, which is great. I was on the 5/28 cycle for 6 months until I had regrowth. I did 140, 240 and 400 mg cycles. I took mine right before bed. In my opinion, it let me sleep through the side effects. I am now on Avastin and a 21/7 cycle of temador @140 mg. Bed time dose for me is keeping side effects away. The only side effect I have from either drug is a lack of energy. I feel like I am running at about 70 percent of normal all the time and when I am off my cycle I am at 90 percent.
best of luck and hit us up with any questioins you have
Sorry to hear about your wife's GBM, Cedric. We didn't get the Temodar until Thursday because of a mixup by the NO's new nurse. My GF takes it at bedtime and takes a Zofran about an hour before, so far it has been alright except when she tried taking the sucralfate which is supposed to coat one's stomach to help prevent upset. Both times she tried the Sucralfate though it made her vomit later. We still have tonight's dose but so far this round has been pretty side effect free. Now if it goes like last time then about next weekend the fatigue will get it's worst. Her last day of radiation was October 25th and her hair has grown back everywhere except the spot where they directed the radiation at where the tumor was and even that is now starting to come in.
I'm glad to hear she's recovering so well, Ken. I recovered most of the hair I lost and then hit a sort of plateau with a small bald spot at ground zero, too, but over the months it has gradually started to come back. I'm not sure it'll ever be the same texture (and I'm not letting it grow out long enough to find out).
Cedric, Ken gives good advice about the Temodar. It's best to take it right before bed, so the patient can sleep through the worst of the side effects.
31-year-old agnostic survivor of low-grade oligo-astrocytoma, diagnosed 6/17/11.
I maintain the Ramblings of a Traitorous Mind blog as a chronicle of my battle with cancer and my related reflections.
Well it's been a couple of weeks since the last dose of Temodar and I thought perhaps I should update. The nausea has not returned and not too many bouts of stomach pain. The most noticeable change to me are the joint pain and headaches she is experiencing. The Dr. kind of played it off but I am pretty sure it is the Temodar. She complains mostly about her knees and ankles and it occurs mostly in the morning. She is only 41 so a little young for arthritis. She can use Tramadol to knock down the headaches but it does nothing for the her joint pain. She takes Ibuprofen for the joint pain but it does not get rid of all of it. Her sleep patterns have greatly improved. She seems to sleep all night and does not sleep nearly as much during the day. Yesterday we were up before 6:30 and she stayed awake until almost 11:30 last night. That is almost unheard of for her. Typically rising that early she would need to lay down for a couple of hours during the day. She has had a persistent cough for months now and then seems to have caught whatever was going around last week. It got so bad she went to see her regular doc who gave her Azithromycin for it. The cough has greatly improved but as a trade off she got some diarrhea from the antibiotic I hope it does not cause lasting lactose intolerance as I believe it did in myself after taking Zmax. I can still not use dairy products without lactaid and it has been nearly a year after the Z pac.
If anyone else has experienced the joint pain and knows of anything that helps please let us know.
Hey Ken- Just to let you know, Tramadol caused me to have seizures after I had my brain surgery. I was taking it for osteoarthritis in my hips, and no one could figure out what was causing me to have them. After I stopped taking it before my first hi replacement surgery, the seizures stopped. Her results may vary, but it's something to be aware of.
Hi Ken- My neurosurgeon was Dr. Aaron Cohen-Gadol, who is one of the few who could have helped me. Yes, he is at Methodist, and is a very focused, humble guy. My NO is Dr Dropcho at IU Health. From my experience, I would be very suspect of tramadol for her, although it is a great pain reliever.
Small world Stageleft. Her first Neuro Surgeon was Dr. Troy Payner and he removed some of the tumor back in 02 but it grew since then. This past August Dr. Cohen removed 95% of the tumor. She did pretty well after the surgery but it really damaged her language abilities (mostly speech but also some reading and writing). Dr Cohen was pretty sure it would improve but it still is not where it was before the surgery. She now sees Dr. Stephanie Wagner whom was recommended by Dr. Cohen. She did her radiation treatments at Good Samaritan in Vincennes under Dr. Tae Chung where we had someone who could drive her there but by the end she was driving herself after we were sure the surgery wouldn't cause seizures. The last cycle of Temodar was much better than the first as you could gather from my posts. I hope you continue to do well and it is good hearing from you.
Well my gf finished the five days on Monday night. Yesterday she had to get up early and we spent several hours in a law office but her divorce is now settled. She did vomit on the way there and in Wendy's restroom afterwords. Today still is not great but nothing nearly as bad as the first cycle. She had also cut back on her olanzapine (zyprexa) to every other day because she is been concerned about her weight gain and I believe that has some bearing on this. She went from 112 to 130 almost over night it seems like. I've tried to get her to simply eat healthier but she prefers high fat and lots of sugar and I'm afraid I'm fighting a losing battle there. On the flip side she complains some about joint pain and fatigue but the fatigue has been mild compared to what I have seen in the past.
If you dont want to do steroids curcumin (with bromelain) and boswellia are natural alternatives to steroids, not quite as effective but no side effects. Health food shops should sell them, or buy on line. Should not be taken with steroids.
I thought I should post an update since it has been several months now. My GF is down to her last two doses of Temodar and she had an MRI yesterday and it is still clear. Most of her hair has grown back except for the left temple where the radiation was concentrated. Other than the August dose she has done well.
In other news we have moved into a house in June and have worked all summer remodeling it. It was pretty dilapidated and we will not finish before next summer. She helps as much as she can and has taken over all cleaning, clothes washing and most of the cooking so I can concentrate my efforts on the house. That is quite an improvement over 2011 but her speech has not really improved greatly though. There is still plenty of stress in her life but things are settling into a new normal.
I hope this is my last update to this thread. My GF just took her last dose of the Temodar cycles, well at least for now. The MRI shows a cavity but no sign of a tumor and now it is just doctors appointments every month and MRIs every other. Let's hope this thing is gone forever.