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Temodar

narthur
Posts: 7
Joined: Aug 2008

Is anyone currently taking Temodar? Did you have heartburn? Feel lightheaded, unbalanced, unable to sleep at night????

joerullo
Posts: 9
Joined: Jun 2008

Hope all is well. My dad is inoperable gbm4 multiforme survivor almost 1.5 years and he took temador with radiation initially. I think the sleep problem can be related to the decadron(dexamethasome)if you are on it that will cause sleeplessness. My dad took xanex at bed time which helped. However, xanex is very addictive if you have an addictive personality like me be careful. Second, the temador causes nauseau in most patients and can be improved with zophran an anti nausea very strong and effective. He was very fatigued and lost his balance and had a physical therapist work with him with stretches and strength it was awesome for the inbalance and muscle deteriation from lack of activity. Last, the temador causes a bad taste which i think is from the taste buds because when you are off the temador for 10 days the taste goes away and that indicates damaged taste buds in your tongue which regenerate or grow back within 10 days or so. I am not a dr. however would higly recommend looking into the above possible solutions to your discomfort during this challenging time. I wish you all the luck in the world.

narthur
Posts: 7
Joined: Aug 2008

thanks for the reply. yeah, i had the bad taste in my mouth. that went away :) and im slowly enjoying food again. i was taking amzemet with it. i told my doctor all my symptoms and he said he was going to put me on another anti-nausea med next month...i didn't have that bad of symptoms last month. but this month he did increase my dose...im very lucky to be doing so well. i will keep you and your father in my prayers.

ChristyM
Posts: 38
Joined: Jun 2008

I am taking temodar currently. I initially took it during my radiation, and now and doing the 5 days for 6 months. During the radiation I was on 160mg, the first 5 day I was at 300mg and now Im at 360mg. Ive found that its best for me to take the temodar with grape-cranberry juice. It works well the first few days, then after that I can taste the temodar again. It does change your taste buds, some things I still have not gotten the taste back for, and unfortunately its been things that I really like that I did not eat at all during my chemo time. Some other things, Ive not lost any taste for.
I find that by the time Im ready to start the next months worth, Im pretty comfortable with eating whatever, but not during treatments.

When did you start your treatments? What dosage are you currently taking now?

narthur
Posts: 7
Joined: Aug 2008

I also did the radiation w/ chemo, now I am also on the 6 month plan. The 1st month I was on 250mg. This month I am on 340mg. I noticed a huge difference this month compared to last month. Eating wise, indigestion, nausea, etc.. I have been taking Amzemet with the Temodar, it worked fine the 1st month. I told my doc, my symptoms, he said that he's gonna perscribe me something else in October, month 3, 3 more months to go! But he didn't say what it is....

Its nice to know that somebody else out there is going through this with me. I'm not glad that you have it, but I do know what you are going through. I haven't found anybody to talk to that has my same diagnosis. I had no symptoms, one evening I had two seziures and they took a CT scan and found the mass. My anaplastic astrocytoma-grade III was in my right frontal lobe, 5cm, I had it removed, craniotomy, in march of this year. I had to go to in patient rehab for about a week to learn how to walk, use my left arm, and talk/think. Because after surgery, it took a couple of days to move my left side, leg, arm, speak. After radiation/chemo, they gave my body a 4 week break, which I had to extend, cause my levels weren't high enough, they gave me a neulast shot, which helped. Now I'm on month 2 of the 6 month cycle. If you want to talk, I would love to stay in contact with you and hear your story. Here's my email: narthur78@hotmail.com I wish all the luck to you and your family and friends and hope you're doing well.

ChristyM
Posts: 38
Joined: Jun 2008

Oh yeah, also--Ive gotten heartburn once from the temodar (I was eating those candy nerds:) ) light headed I have been a couple times, usually right after treatment starts. Unbalanced, havent had at all, some problems going to sleep at night just depending on what else I do on a particular day.

aaz
Posts: 4
Joined: Sep 2008

I have heard that the mint tea helps with the nausea associated with temador, has anyone had any success with this?

aaz
Posts: 4
Joined: Sep 2008

If there are any other suggestions for the nausea as well that would be great

narthur
Posts: 7
Joined: Aug 2008

i haven't tried the mint tea...i was taking amzemet and compazine when taking the temodar and still got some nausea. my doctor said he's gonna try kyrol next time.

ChristyM
Posts: 38
Joined: Jun 2008

Ive drank a lot of iced tea and also drink cran-grape juice to take my pills. I have pepsi and coffee every morning.I havent tried mint tea, but I bet it would work--things that stick a "taste" in your mouth seem to work well for me.
For me, it seems that when I have a good taste it helps the nausea feeling. I am on the generics for compazine and zofran and that helps the nausea a lot. I try to walk around (work, my house, whereever!) that seems to help a little too.

ChristyM
Posts: 38
Joined: Jun 2008

Ive drank a lot of iced tea and also drink cran-grape juice to take my pills. I have pepsi and coffee every morning.I havent tried mint tea, but I bet it would work--things that stick a "taste" in your mouth seem to work well for me.
For me, it seems that when I have a good taste it helps the nausea feeling. I am on the generics for compazine and zofran and that helps the nausea a lot. I try to walk around (work, my house, whereever!) that seems to help a little too.

berdohn
Posts: 1
Joined: Dec 2012

No joke pot is a damn merical not only instant relief for nauseas make you feel like eating and helps you sleep

Mannie
Posts: 51
Joined: Oct 2008

I took Temodar and finished taking it June 21st of this year. I was taking about 140mgs, it changed depending on the weight I lost/gained from Decadron. I took the initial 42 day round with 42 treatments of radiation therapy, took 3 weeks off and then started taking it again. My "real" chemo treatment was a full 13 months of Temodar and I took it for 21 of the 28 days straight every month. People at the cancer center were shocked that I was taking chemotherapy every morning (that's when it worked best for me) for 21 days straight. I noticed the taste of the pills but I figured it was better than dying. I did not have nausea when I was taking the chemo but I was nauseated during my week off because the chemo lingers in your body but Zofran does not. I had so many side effects from all the medications I was on that I can't pinpoint any of them on any medication specifically but I was being treated for heartburn-the Decadron caused that, headaches, neuropathy-a side effect of Temodar and I think radiation, awful fatigue, numbness in some parts of my body, irregular menstrual cycles, atrophy, and I did feel light headed but I always assumed that drunken feeling was from 3600mg of neurontin, and narcotics. It got to the point where all my doctors knew me because everything that could have gone wrong did. I could not sleep at night but that started right after surgery because of the terrible heartburn from the steroids. Right now I'm experiencing the worst side effect of all, my bone marrow is so suppressed that I've been off of Temodar for 4 months and I still am unable to get my WBC count up into the normal range; it actually keeps dropping each week.

ChristyM
Posts: 38
Joined: Jun 2008

Hi Mannie,

What type of tumor did you have? Did you have surgery?

Mannie
Posts: 51
Joined: Oct 2008

I have a gemistocytic astrocytoma. I did have surgery. I had an awake right frontal craniotomy. Basically I had brain surgery along my hair line in the front/right and I was awake for the whole thing. I knew what was going on the whole time; I was completely coherent and talking to the anesthetist. Oh, trust me, it was really painful, especially where the halo dug into the back of my skull. My surgeon created this surgery and he thought I would be a perfect candidate. So, yes, I had surgery, radiation, and chemo. It's an uncommon kind of brain tumor with a pathetic life expectancy from diagnosis. But since it is rare, my surgeons were really excited and on top of that it was healthy cancer - I don't have any other health problems and I'm young, I was 25 yrs old when I was diagnosed. This whole adventure has been hell to put it mildly. When I hear people say that they are up and moving and taking walks a few months later I am completely shocked because it took me a while before i could even prepare myself meals without getting burned. I was very fortunate to be referred to a fantastic oncologist. He's been on a lot of national radio shows talking about brain cancer related stuff (like the latest cell phone fiasco)and always at conferences teaching. I got lucky having him as a doc because he is known all around the country. His name is Dr. Lieberman from UPMC in Pittsburgh at the Hillman Cancer Center. I still have some of the tumor and I always will. I had to be treated as if I had a GBM because my cancer was dividing at 10% like a GBM, which is considered a high #,in most of it or else I would have died. GBM was my initial diagnosis. How about you?

preciousdelta
Posts: 1
Joined: Jan 2009

Hi Mannie,

How long ago were you diagnosed? And how are you doing now? My fiance' was also diagnosed with a Gemistocytic Grade III Astrocytoma in October. He just recently started the radiation and chemo. So far, he hasn't had any side effects. He's going on his 2nd full week. Anyway, just wanted to see how you were doing a few months later.

Also, to other survivors, have you returned to your pre-surgery lifestyle, i.e. back to work, recreation, exercise, etc.? My fiance' is really worried that he won't ever return to a sense of normalcy.

Any input is appreciated. Thanks!

MollyMagee
Posts: 5
Joined: Jan 2009

My husband has had a brain tumor for 10 years. (different kind) He had surgery then radiation in 1998, The radiation will wear you down, very tired, but overall, not too bad to take. Rest, eat well, and it will be ok. Even after he finishes, he will be tired for awhile, it keeps on working. We didn't do chemo then, but after the tumor came back for the 3rd time, he has been on Temodar for over a year now, no growth since then. Chemo also makes him tired, and some stomach problems. Can't advise you about post-surgery lifestyle, he had major speech and cogitive problems and seizures since the first surgery and has never been the same. But it depends where the tumor was, how big, etc. My daughter also had a brain tumor removed 4 years ago, affected her right side, but now can walk pretty well and function.Her speech is fine and no brain damage so she is ok except for a limp. If your fiance came out of surgery pretty normal with his functions, he has a good chance of normal I would think. I have seen people from my support group go back to work, drive, etc so it can happen. It might take some rehab, but it does happen. Hang in there, it can be a long road.

Giampaolo
Posts: 1
Joined: Dec 2010

hi to all,
my wife was diagnosticate a Gemistocytic astrocytoma 2 level with a 7% of activity, made the operation and radiotheraphy, couldn't talk well for a month or 2 but now she in beyyer and back to a normal lfe. She must ceck every 6 moths.
Ciao
Giampaolo

Mannie
Posts: 51
Joined: Oct 2008

Where's your fiance getting treated at? Where's his tumor located?

It will be 2 years in March since my diagnosis. I'm doing good, scans are still good. Life has not been easy but it could have been a lot worse.

On the other hand, things are different but I think it's because I had major life detours right before I was diagnosed. I've pretty much returned to my pre-surgery lifestyle. I didn't return to work. I volunteer at a couple places when I can. I love doing hard physical work outside. I exercise almost everyday. I make jewelry with swarovski crystals. I try to do every crossword puzzle I find. I like to stay up-to-date with what's going on in the world and with cancer stuff but since I volunteer at a cancer center I sometimes get burned out. It doesn't sound very exciting but it's taken a lot of work to get to this point.

Your fiance may never return to the normalcy he's looking for but he'll return to some kind of new normalcy, even if it sucks at times.

Mills327
Posts: 1
Joined: Jul 2010

Interested to read about questions of Temodar and gemistocytic astrocytoma. My husband (age 73 now) was diagnosed Dec. 06 with a stage two. He had radiation for six weeks along with six weeks of Temodar and then a year of temodar (5days,300 mgs) every month. We had MRI's every two months until Oct. of 09. The MRI showed "no change" in the brain. But , and this is a big but) our life has drastically changed. The loss of most speech,the loss of motor ability, incontinence are our life now. The "good side" is there has never been any pain, and my husband seems content. We now have hospice twice a day to help me, a hospital bed, and a hoyer lift. He eats well, often seems to understand what is said to him. My feeling is the radiation and temodar took care of the cancer but the side effects put him in a wheelchair for the rest of his life. This has been very gradual, as he could walk and talk and function for the first year and a half, but now.... Also had PT for 21 months until there seemed to be no improvement.

RLR
Posts: 36
Joined: Sep 2009

Hello:

I have been taking Temodar every since March of 2009 just after surgery for GBM4 on 1/13/2009. I too have had heartburn/chest pains, in fact I was put in the hospital for it and even had a heart cath done about 6 to 8 months after surgery and found nothing. I also have trouble sleeping all through the noght. I probably wake up at least every hour and then try to get back to sleep. I have not had much trouble with balance but I do have trouble with dizzeiness(which was found to be Vertigo and is very easily treated).
Take care Rick

Islander8
Posts: 2
Joined: Jan 2011

Try taking 20mg of Melatonin at night before going to bed. Studies have shown that not only does it help with sleep but it will help extend your life with the Cancer.

cdavis07
Posts: 11
Joined: Sep 2010

My husband had surgery for his tumor in Aug 2010. When he was on steroids they also had him on steriods. Followed by Temodar. He was on prolonged steroids but when he stopped the prilosec he felt worse. So he has been on Prilosec ever since and it seems to help with the Temodar treatments. Ask your doc to try it. Or Nexium. I have seen a huge difference from when he wasn't taking prilosce and when he is. Good Luck.

RLR
Posts: 36
Joined: Sep 2009

Yes I am on Temodar and have been for 4 years Jan. 13,2008.
I have had little to no side effects.Really I have not had any of these problems you mention. I think fatigue is my biggest problem.

Ninamom
Posts: 24
Joined: Aug 2012

Is there anyone who is taking 430mg of Temodar?  What are your side effects?  My daughter 30yr.old is on her round 2 of this dosage and is vomiting,,chills and tired.  She also has short-term memory loss, shaking of hands and legs.  We have been told she doesn't carry the gene for the great results with Chemo.  She has also had radiation, 45 days of straight Temodar, 1 round of 300mg and now the 2nd round with 430mg and Gamma Knife.  Anyone could help with some answers I would appreciate it.  She also has low platlets and lupus. 

Caquigg46's picture
Caquigg46
Posts: 3
Joined: Feb 2013

I was on temodar for a year but a much lower dosage. What type of brain cancer and what stage is it? 

Annette

missy 1994
Posts: 8
Joined: Feb 2013

is temodar good my grandpa has brain cancer and im scared and dunno what to do.

BenLenBo's picture
BenLenBo
Posts: 144
Joined: Feb 2012

Hello,

    I was on Temodar , first time was while I was taking radiation, but at a lower dose.  When I completed my radiation, temodar was

increased for 6 months.   I did not suffer any symptoms from taking Temodar, my oncologist, had me take Ondansetron for nausea

one hour before taking the Temodar. This was done 1 hour, prior to taking Temodar tablets, and at night, so if there were

any symptoms, I would sleep through them.  Worked wonderful!  My doctor's believe in treating sypmtoms before they

become a problem.  Was also given a handbook all about cancer, in there certain foods were listed to avoid while on chemo

and taking temodar.  Any acid juices, sugars, tomato products etc.  My treating facility is Roger Maris Cancer Center, John Hopkins

and Mayo.  I was dx with Oli Grade III, have the 1p19q deletions, and presently cancer free.  No physical problems suffered

from 99% removal of left frontal lobe tumor.  Good as new :o)

 

Ben

BenLenBo's picture
BenLenBo
Posts: 144
Joined: Feb 2012

Hello,

    I was on Temodar , first time was while I was taking radiation, but at a lower dose.  When I completed my radiation, temodar was

increased for 6 months.   I did not suffer any symptoms from taking Temodar, my oncologist, had me take Ondansetron for nausea

one hour before taking the Temodar. This was done 1 hour, prior to taking Temodar tablets, and at night, so if there were

any symptoms, I would sleep through them.  Worked wonderful!  My doctor's believe in treating sypmtoms before they

become a problem.  Was also given a handbook all about cancer, in there certain foods were listed to avoid while on chemo

and taking temodar.  Any acid juices, sugars, tomato products etc.  My treating facility is Roger Maris Cancer Center, John Hopkins

and Mayo.  I was dx with Oli Grade III, have the 1p19q deletions, and presently cancer free.  No physical problems suffered

from 99% removal of left frontal lobe tumor.  Good as new :o)

 

Ben

Jstreet's picture
Jstreet
Posts: 4
Joined: Feb 2013

I just started on Temodar 250mg this week, for five consecutive days each month to treat a pilocytic astrocytoma in the pons of the brainstem. I know not to eat an hour or two before taking Temodar.  Are there any other dietary guidelines or restrictions while I am on Temodar? I’ve been reviewing the information, both from my doctor’s office and from other sources, and I don’t see any mention of any restrictions.  Nor do I recall the doctor verbally saying anything about dietary restrictions.  Consuming more water and fruit may help prevent the side effect of constipation, but is there anything I should not eat?  I just want to be sure.

I had a co-worker tell me that when her son was on chemotherapy (not Temodar, but a different type) he could not consume any coffee, tea, sweets, caffeine or sugar or any kind.  To the contrary, I’ve also read that moderate amounts of coffee may increase the “therapeutic effects” of some chemotherapy drugs.

Other than constipation, I have not yet experienced any other side effects from Temodar. Tonight will be my 5th dose of five for this first round.

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