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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

5 People found this comment helpful

In June of 2011, my Dad was diagnosed with Stage iv glioblastoma. Treatment? - Temodar. Other than he lost a lot of weight and yet bloated up, no real side effects UNTIL August 23rd, 2011. He was admitted to the hospital because he was having difficulty breathing.Very short yet long story made short, the following Monday, he died. This "miracle" drug which was supposed to give us at least anot...

Shared reviews and ratings

Joshua | 25-34 | Male | On medication for 1 to 6 months | Patient
7/25/2021
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

I was diagnosed on 05/02/2021 with GBM4. I was taken in for immediate craniotomy which was preformed on 05/05/2021. I started my 6 weeks of radiation and 42 days of Temodar and never had a negative symptom or side effect. They did say my experience was rare but I hope a lot of you have a similar one. I never got fatigue, lack of appetite or nausea which are all the more common ones.

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Mark | 45-54 | On medication for 2 to less than 5 years | Patient
7/24/2021
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction

My doctor prescribed a VERY AGGRESSIVE chemotherapy regime for me when I was diagnosed with a grade 4 glioblastoma at age 46. Although it was a horrible two years involving many hospital stays and rounds of radiation. I can honestly say that I would not have had it any other way. I am an 11 year survivor, with only a few side effect of the cancer.

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Pamela | 65-74 | Female | On medication for 1 to 6 months | Patient
6/15/2021
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 2.3
Effectiveness
Ease of Use
Satisfaction

Nausea and gut disturbance fatigue jump from 40mg in conjunction with radiotherapy to 180mg 5 days a month not tolerating nil hazzles during RT#

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Anonymous | 55-64 | Male | On medication for 1 to 6 months | Patient
3/30/2015
Condition: A Type of Brain Cancer - Anaplastic Astrocytoma
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction

Combined with radiotherapy so not 100% certain how much the drug contributed to fatigue, but gut disruption was not pleasant.

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cabarbera | 55-64 | Male | On medication for 6 months to less than 1 year | Patient
1/18/2015
Condition: Cancer of Pancreas Islet Cells
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

Diagonosed 11/2001. Unresectable neuroendocrine tumor. 7 years on Sandostatin, 5 years on Afinitor. Temodar 9 months so far. I feel very blessed to have benefited from all of my treatments. Temodar has been by far the easiest treatment to take. 300 mg per day 5 days per month. Biggest side effect is severe constipation and fatigue. First two series of MRIs showed shrinkage and no spread. Will be doing my 3rd next week.

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Anonymous | 65-74 | Male | On medication for less than 1 month | Patient
2/20/2014
Condition: Cancer of Pancreas Islet Cells
Overall rating 3.3
Effectiveness
Ease of Use
Satisfaction

i have taken temodar in conjunction with capecitabine for pancreatic cancer. the capecitabine has made me severely nauseaus and once i added the temodar, i was really in trouble. i was unable to eat or drink, (even water) for days, despite trying the anti-nausea drugs zofran, compazine, reglan and ativan. my advice to you is to go to your oncology clinic and get rehydrated with an iv. dehydration makes the nausea worse, and you will never get ahead of it if you don't get some iv fluids. the last time i went, i was given 4 mg of the steroid decadron which eases nausea, encouranges appetite and gives a feeling of well being. for me, it worked like a charm! don't suffer it you don't have to ! if you have gone two days without food and if you are drinking only the bare minimum, you WILL be dehydrated. you can live for weeks without food but you can die within days if your need fluids ! i hope this helps someone. i don't know if these drugs are working for me as this is the first course. keep your chins up !!!!!!!!!Read More Read Less

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Cassie | 75 or over | Male | On medication for 1 to 6 months | Caregiver
12/28/2013
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 2.3
Effectiveness
Ease of Use
Satisfaction

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. He also hallucinates. Because of these symptoms, they have delayed the second round of Temodar, which will be a 5 day regimen per month. He has, at this moment, no quality of life. We cannot leave him alone at all because he panics and can't take care of any of his needs, such as dressing, showering, etc. Our family is awaiting an MRI on Jan 2nd to determine whether or not to continue treatment. At this point quality of life is our utmost concern. We want to give him every chance to extend his life, but at what cost? He is just existing right now.Read More Read Less

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Caroline | 45-54 | Female | On medication for 6 months to less than 1 year | Patient
8/30/2013
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 4.3
Effectiveness
Ease of Use
Satisfaction

Diagnosed with GBM grade 4 in 1/13, had immediate surgery with full excision of tumor. Completed 6 weeks of radiation concurrent with 42 days straight of temodar. Now on monthly cycles as described by others in this post, taking the highest dose for my height and weight. So far, so good. MRIs show no recurrent tumor, only side effects have been fatigue and constipation. I will gladly put up with these as long as this continues to work. So very grateful to have this drug. God Bless all of my fellow GBM colleagues! Keep fighting, we can do it!!!Read More Read Less

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life is good | 55-64 | Female | On medication for less than 1 month | Patient
6/25/2013
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 3.7
Effectiveness
Ease of Use
Satisfaction

i was diagnosed sept 2011 with stage 4 glioblastoma and they treated me immediately with radiation and chemo. i was told 4-12 months for my survival rate. however, the tumour has just reappeared so now back on the treatments again. hopefully it will give me another couple of years.

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Cornishcough | 45-54 | Male | On medication for 1 to 6 months | Patient
5/31/2013
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction

Tumor found last weekend of January 2013, operated he following Tuesday, 7cm x 5cm x 3.5cm. Pathology determined it was GBM4. Have completed Phase I after surgery, 42 days on,with radiation for 34 days at the same time. Lost about 2/3rds of my hair in beaming areas of scalp. Had 1 month off. Am now on Phase II, 5 days on 23 days off, every month. No real problems experienced other than occasional passing nausea and tiredness. Zofram has handled any stomach upset taken 1 hour before the temodar. MRIs and CTs so far good. CBCs good except for a .1 variation in liver enzymes, within norms. Have returned to work. Things so far are good.Read More Read Less

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RLR | 55-64 | Male | On medication for 2 to less than 5 years | Patient
4/16/2013
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

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 myself at about 95%. I can do most everything I did before surgery, now I just take more short naps.Read More Read Less

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karenhasch | 55-64 | Female | On medication for 1 to 6 months | Patient
1/22/2013
Condition: Other
Overall rating 4.3
Effectiveness
Ease of Use
Satisfaction

I've had no problems with this drug, although I thought the benefit would last longer than 1 year. I have new growth after finishing 1 year of Temodar and being off 1 year. I'm back on the Temodar doing a 21 day on, 7 off. My first round was 5 days on and 23 off. I hope it works again!

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m202 | 19-24 | Male | Patient
1/15/2013
Condition: A Type of Brain Cancer - Anaplastic Astrocytoma
Overall rating 3.3
Effectiveness
Ease of Use
Satisfaction

I was prescribed temodar when I was 12 after my brain tumor (which I got when I was 6) came back. I did 1 year and it was horrible for me. It didnt shrink the tumor but it stopped it from growing. I was always vomitting and nausea medicine didnt work. After my year my tumor started growing again. I was put on temodar again this time with lower doses for 18 months. It has been 6 years and my tumor is still stable (last use: 2006). I guess I'm satisfied, would of been great though if it got rid of my tumor. Read More Read Less

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JohnS | 65-74 | Male | On medication for 6 months to less than 1 year | Patient
1/15/2013
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

Diag April 2012, surgery to remove brain tumor on Jun 15, 2012, grade 2, put on Temodar 28 day cycle without rediation. Starting my 7th cycle this week. Have blood work on day 21 and 28 with MRI inbetween. To be on Temodar for one year. My MRIs have been good with no new growth. I have not had any lost work for norisa, do have the fatuigue in week one and week two of cycle. Have been able to work full time since six weeks after surgery exam.

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gene | 65-74 | Male | On medication for 6 months to less than 1 year | Patient
6/29/2012
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 3.7
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stressed | 45-54 | On medication for 1 to 6 months | Patient
3/4/2012
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 3.0
Effectiveness
Ease of Use
Satisfaction

I have just started treatment, 5 days once a month. 2 weeks off so far. I completed a series of radiation first. Extreme fatigue a lot of non listed symptoms. My hair is increaded in loss from when it did from radiation. Has anyone experienced hair loss from Temodar? I was told it would not happen.

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Anonymous | 55-64 | Male | On medication for 2 to less than 5 years | Patient
1/31/2012
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 4.7
Effectiveness
Ease of Use
Satisfaction

Diagnosis on 12/24/09 with surgery on 1/4/10. 6 weeks of radiation with 180 mg of Temador. Continued Temador for another 8 months. MRI every two months. From the beginning I saw a naturalpath that specialized in Glioblastomas. Took ~100 supplements a day, down to 50 now. Recurrence in 10/11 as expected. I was told that there is an expectation that 90% will have a recurrence within two years. I am unable to work due to the memory issues. A 15 min nap at lunch solved the tiredness issue. I feel great and am living an otherwise normal life. Read More Read Less

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Liz | 25-34 | Female | On medication for 6 months to less than 1 year | Patient
1/13/2012
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

About 80% of my tumor was removed surgically, however it started growing back 3 months later. My doctor opted for Temodar. So far, my "aggressive" tumor has not grown anymore. The only side effect I have experienced is a little fatigue after the 5 day cycles each month. I have been on Temodar for a year and my doctor checks my blood count each month and it has been great. He is taking me off of the treatment to see what happens but is still going to monitor me closely every three months.

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Momatabor | 45-54 | Female | On medication for 6 months to less than 1 year | Caregiver
11/25/2011
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

They found my brothers gbm4 in 2007 he had surgery, with a 80% reduction ,temodar,radiation,for 6 months .he has been in remission for four years now and just last month the tumor started to grow again,he is good health so we are givin it a try again,here's to 4 more years. the combination of all three has giving us a priceless gift?

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vfae | 75 or over | Female | On medication for 1 to 6 months | Caregiver
11/2/2011
Condition: Malignant Brain Tumor Glioblastoma
Overall rating 1.0
Effectiveness
Ease of Use
Satisfaction

In June of 2011, my Dad was diagnosed with Stage iv glioblastoma. Treatment? - Temodar. Other than he lost a lot of weight and yet bloated up, no real side effects UNTIL August 23rd, 2011. He was admitted to the hospital because he was having difficulty breathing.Very short yet long story made short, the following Monday, he died. This "miracle" drug which was supposed to give us at least another year on the 6 months he would have had without it, KILLED him in two months. It cost them $5,000.00 for this medication - and it killed him. Make sure you read EVERYTHING before taking this drug. MY Dad was 80. Apparently they had not really tested it on over 70. You might say, "he lived a long life", but he had so much more to do and live. His parents lived 10 years beyond his life. Just think about it, 10 years is a long time. Read More Read Less

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