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3.9 Overall Rating

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Most voted positive review

54 People found this comment helpful

Diagnosed with GBM4 on 12/15/2008 surgery on 1/13/2009 to remove 7.5cm tumor.I also had 6 gliodel wafers at time of surgery. Started on Temodar about 1/19/09 and 30 treatments of radiation about the same time.Have now been on 250 mg of Temodar 5 days on 3 weeks off for 4 years and 3 months as of 4/16/13. Last 3 MRI's have came back with no sign of the cancer!!Biggest problem is fatigue, I consider...

Most voted negative review

4 People found this comment helpful

My husband had surgery in August 2013 and had 90% of the tumor removed. Because of other unrelated medical issues, he didn't start the treatment until 6 weeks after surgery. He had 37 radiation treatments, 5 days/week and during that same period he took 160 mg of temodar 7 days/week. Towards the end of the treatment he became more and more confused, disoriented, restless, anxious and has insomnia....

Shared reviews and ratings

zarabia | 35-44 | Female | On medication for 1 to 6 months | Patient
9/2/2009
Condition: Other
Overall rating 4.3
Effectiveness
Ease of Use
Satisfaction

I have an oligodenroglioma with 1p19q codeletion. I'm about to start my 5th month of 5 days on, 23 days off, and so I hope I don't jinx myself, but so far my experience has not been as bad as I had feared. The first 2-3 of 5 days go pretty well; after that, fatigue, constipation, loss of appetite increase, but so far, not too bad. Nausea has so far been controlled by zofran. White cell counts are affected so I have to have Neulasta injections after each cycle.

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tc | 65-74 | On medication for 6 months to less than 1 year | Patient
8/6/2009
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 5.0
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Ease of Use
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blessed | 35-44 | Male | On medication for 2 to less than 5 years | Patient
6/24/2009
Condition: Other
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction

Have had good experience so far on Temodar (295mg). I had 2 tumors removed and decided against radiation and taking only the oral chemo. Scans have been good so drug is working. Not to many side effects other than lack of concentration and horrable constipation.

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joey | 55-64 | Female | Patient
6/20/2009
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction
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blackschnauzer | 45-54 | Male | On medication for 1 to less than 2 years | Caregiver
6/11/2009
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 3.7
Effectiveness
Ease of Use
Satisfaction

My husband is 52. Has been on 340 mg Temodar since February 2008, taken 5 days on and 23 off immediately before going to bed w/Anzemet to avoid nauseated feeling. Very fatigued but keeping the tumor away. Short term memory is affected but can't say it is from the drug and not the surgery itself.

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webmd | 35-44 | Male | On medication for 1 to 6 months | Patient
2/10/2009
Condition: A Type of Brain Cancer - Anaplastic Astrocytoma
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

Second iteration of Temodar (2009), last used in 2003. Expect similar effectiveness and more rounds in subsequent years. Every 5-6 years is hardly something to complain about. In terms of ease of use, can't beat it (oral at night vs. IV/portacath) and the side effects have been limited in comparison to previous IV-introduced therapy. I'm satisfied with the drug. If you prefer more agressive therapy, read cancer research articles for something to augment Temodar. In my case, I'm taking EGCG tablets; a study at USC suggests EGCG increases chemosensitivity to Temodar. (survival:13 years, 3 months)Read More Read Less

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Anonymous | 19-24 | Female | On medication for 1 to 6 months | Caregiver
2/7/2009
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 2.0
Effectiveness
Ease of Use
Satisfaction

My father is 46 and was on this for 42 days with radiation and then once this was done he did 5 days of 300 mg once a month. This was done for 3 months until the tumor had begun to grow again. So, it made the tumor stable for only a short time. Now on IV avastin and camptosar...so far so good, doing great.

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camaroman | 45-54 | Male | On medication for 1 to 6 months | Patient
2/1/2009
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 4.3
Effectiveness
Ease of Use
Satisfaction

I am on 42 day treatment paired with radiation. until recently no side effects, now experiencing smothering effect anywhere from 2 to 7 hrs. after taking. cannot lay on back and breath during this time. eventually it subsides and I can go to bed. Has anyone else experienced these symptoms? I might mention during this time there is acute discomfort at bottom of left fib cage and tenderness in chest muscle.

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Anonymous | 25-34 | Male | On medication for less than 1 month | Patient
11/13/2008
Condition: Other
Overall rating 1.0
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lilsadiejgb | 55-64 | Female | On medication for 5 to less than 10 years | Patient
10/22/2008
Condition: Other
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

I have taken Temodar since 9/99 for metastaic melanoma of the brain. The doseage was reduced to 100mg for seven days one week on and one week off. I do have fatique constantly. I had a total of nine brain tumors and have been NED since 8/2000.

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Anonymous | 25-34 | Female | On medication for 2 to less than 5 years | Caregiver
10/1/2008
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 3.7
Effectiveness
Ease of Use
Satisfaction

My mother has been on this drug for 2.5 yrs now. I am wanting to know if anyone else can validate the side effects we (family) are seeing are due to the drug. She is a completely different person from then to now. Many side effects we are seeing are lack of concentration, short term memory, personaltiy changes, moody, trouble with numbers-cognitive changes, equalibrium is completely off and can not walk far w/out asst., fatigue all the time, etc.... Please could some one out there tell me these are from the chemo drug? I asked my mom's dr and he could not provide me with as answer, because I do not think he knows what Temodar can do to people longterm...... Read More Read Less

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scott | 35-44 | Male | On medication for less than 1 month | Patient
8/2/2008
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

began treatment 2 weeks ago so far no side effects

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mytwotumors | 25-34 | Female | On medication for 2 to less than 5 years | Patient
6/14/2008
Condition: Other
Overall rating 3.7
Effectiveness
Ease of Use
Satisfaction

I am in my 21th month of temodar out of 24. I've been really tired and experienced bad side effects during 3 of the 5 days of treatment on average. I'm disappointed because my tumors (two locations) were inoperable and have barely shrunk. But the stabilization is perfect. I would hate having to take this drug for the rest of my life as the symptoms caused by the tumors have not disappeared (seizures, vertigo, dizziness and distorted apprehension of space). What's the use of two years of fatigue in your life for this????Read More Read Less

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Jimak | 75 or over | Male | On medication for 1 to 6 months | Patient
3/24/2008
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 4.7
Effectiveness
Ease of Use
Satisfaction

I've taken my first week's dosage (300 mg per day) and have felt o.k., except for fatigue. I've completed the radiation and Temodar 40 day treatments, now on the monthly dose. So far so good. Wish I had more energy, and I sleep a lot.

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Anonymous | Female | On medication for 1 to less than 2 years | Patient
1/21/2008
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

I Hve taken this 18 months and still have a quality life. I have hd no side-affects exceept for slight headache on pill days.

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