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Temodar

mpatten
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Does any one have any experience with temodar I was hoping to get some information on the side effects from a patients point of view. I had lung cancer and now they are treating four small tumors with a 2nd gamma knife procedure and temador. They want me to stay on the temodar for six months. I already had some side effects which included thrush and a rash from the smaller does which was 1 pill a day for about 30 days now they want me to take 3 pilla 100mg a day for five days.

Explore topics in this discussion:

Cancer Dizziness Brain tumors Melanoma Thrush Lung cancer

8 replies

gpawelski

You may want to look into this web site by Al Musella. They're using Temodar for brain mets now (not just primary brain tumors). They list a support group there.

http://www.virtualtrials.com/

JUDYB1

I have been on Temodar since 1999. I took 160mg daily for a couple of months and then went to 100mg for seven days every other week. I have been on this dosage ever since. If I do NOT take the antinausea medication (Zofran 8mg) morning and evening that I take the Temodar I experience dry heaves for several hours. Otherwise I don't have problems. I do have major fatique, which is probably a combination of all the medications I do take. Since I have been NED since 8/2000 the Temodar must be working.

mpatten

Judy,

Were you taking the Temodar for Brain Met's or a primary Brain tumor?

JUDYB1

I am taking Temodar for metastatic melanoma. My first melanoma was on my back, 22 years later went to my brain. When I first went on the Temodar 9/99, this was the only treatment for melanoma of the brain. So far it has worked or I am very, very lucky. The "kicker" is in February I will be on Medicare and who knows what drug plan will help pay for Temodar, which is very, very expensive and the other drugs which I am on.

mpatten

Judy,

Thank you for the information. I went to the doctors yesterday and they have decided to take me off the temodar, because of a rash I developed while taking it. Have you had any experience with a rash while taking Temodar?

Thanks,
Michelle

JUDYB1

I am so sorry you are having a problem with Temodar. I have not had problems when taking it. I did break out in a rash taking Levanox (like heparin) and Leukine (for low WBC). That was 9 years ago. I wonder if I would have the same reaction now. This what WebMD says regarding side affects.

A very serious allergic reaction to this drug is unlikely, but seek immediate medical attention if it occurs. Symptoms of a serious allergic reaction may include: rash, itching, swelling, severe dizziness, trouble breathing.

What does you doctor say you should do now for treatment? Is the rash very bad or tolerable?
JudyB1

LizardmyOli

I was on a few months at a low dose, now I am on a high dose of 430 mg for 5 days, then the doc checks my blood work and if all is well, I will get a 23 day break and then back on a 5 day cycle for the next 7 or so months.

I got the mouth thing, but another med took care of it, I have chemo brain and radiation brain and the whole brain cancer issue of side effects! I take so many other meds to manage siezures and stuff, that half the time I think the other meds can cause problems!

What are they suggesting in place of the standard of care that includes Temador?

cidz

My son has been on 300 mg. Temodar 5 days a month, every month for 2 years now. He does really well on this maintenance dose. He has some nausea, light headedness and fatigue. But it has done it's job for keeping the tumor from growing.

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