› Forums › General Melanoma Community › Anybody on Temodar?
- This topic has 24 replies, 4 voices, and was last updated 11 years, 7 months ago by
MariaH.
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- October 31, 2011 at 10:50 am
Dave is getting his Temodar delivered on Tuesday. He does not want to start it until Friday so that he can wean off the steroids a little more prior to starting it. He's currently at a 30mg dose of prednisone. They have given him scripts for Compazine (nausea) and Bactrium (anti-biotic) to prevent pneumonia.
His dosing will be 160mg a day for 42 days, then a week off. His oncologist is scanning at the end of each round.
Dave is getting his Temodar delivered on Tuesday. He does not want to start it until Friday so that he can wean off the steroids a little more prior to starting it. He's currently at a 30mg dose of prednisone. They have given him scripts for Compazine (nausea) and Bactrium (anti-biotic) to prevent pneumonia.
His dosing will be 160mg a day for 42 days, then a week off. His oncologist is scanning at the end of each round.
Anybody out there have experience with this type of treatment? Personal experience with side effects would be much appreciated. Of course, he wants to work during the treatment if possible. I'm just wondering if that will be realisitic.
Thank you for all your input,
Maria
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- October 31, 2011 at 1:58 pm
My husband was on Temodar, but a different schedule of it than your husband. He was instructed to take the anti-nausea medicine a half hour before he took the Temodar, and he never did suffer nauseau.
The only side effect he had was fatigue.
Good luck.
Jackie W
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- October 31, 2011 at 1:58 pm
My husband was on Temodar, but a different schedule of it than your husband. He was instructed to take the anti-nausea medicine a half hour before he took the Temodar, and he never did suffer nauseau.
The only side effect he had was fatigue.
Good luck.
Jackie W
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- October 31, 2011 at 1:58 pm
My husband was on Temodar, but a different schedule of it than your husband. He was instructed to take the anti-nausea medicine a half hour before he took the Temodar, and he never did suffer nauseau.
The only side effect he had was fatigue.
Good luck.
Jackie W
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- October 31, 2011 at 4:48 pm
Maria,
My dad has been taking 160 mg temodar since May at 21 days on/ 7 days off. He was also on WBR to begin with, so his initial side effects probay were from both.
He lost a bit of his appetite, but most of it came back about 2 months post WBR, so he is eating fairly well. He lost about 20 pounds since all the treatments started, even though he is still on 2mg Decadron (for the brain swelling). He also takes the anti nausea pill (Promethazine 25mg) 1/2 hour prior to Temodar at bedtime, and has not really had any problems in that regard. He does still have a lot of fatigue, and usually has diarrhea in the mornings. I TRY to limit his coffee to 8 oz. and encourage him to eat gentle foods to control this, but he pitches a fit and I am just giving him 1/2 an immodium as needed. He is not an ideal patient in the sense of telling me his symptoms/ side effects until days after, so I don't always catch them soon enough to determine the cause.
Dad's tumors have definitely slowed down during Temodar treatment, though the results are still mixed – slight growth in some places (spleen, colon) with shrinkage in others (brain), and more or less stable in lungs. Dad has been getting scans approximately every 8 weeks or less; the next one is in a week.
I hope that you see good results on your next scan!
-DF
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- October 31, 2011 at 4:48 pm
Maria,
My dad has been taking 160 mg temodar since May at 21 days on/ 7 days off. He was also on WBR to begin with, so his initial side effects probay were from both.
He lost a bit of his appetite, but most of it came back about 2 months post WBR, so he is eating fairly well. He lost about 20 pounds since all the treatments started, even though he is still on 2mg Decadron (for the brain swelling). He also takes the anti nausea pill (Promethazine 25mg) 1/2 hour prior to Temodar at bedtime, and has not really had any problems in that regard. He does still have a lot of fatigue, and usually has diarrhea in the mornings. I TRY to limit his coffee to 8 oz. and encourage him to eat gentle foods to control this, but he pitches a fit and I am just giving him 1/2 an immodium as needed. He is not an ideal patient in the sense of telling me his symptoms/ side effects until days after, so I don't always catch them soon enough to determine the cause.
Dad's tumors have definitely slowed down during Temodar treatment, though the results are still mixed – slight growth in some places (spleen, colon) with shrinkage in others (brain), and more or less stable in lungs. Dad has been getting scans approximately every 8 weeks or less; the next one is in a week.
I hope that you see good results on your next scan!
-DF
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- November 1, 2011 at 8:42 pm
Thank you for replying. I believe that Dave's scan schedule will be the same (he will do the 42 days at the same dosage as your dad). I worry about gastro problems, as that did seem to be the side effect Dave got with interferon – and he didn't care for it much.
Let us know how your Dad makes out on his next set of scans.
Maria
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- November 1, 2011 at 8:42 pm
Thank you for replying. I believe that Dave's scan schedule will be the same (he will do the 42 days at the same dosage as your dad). I worry about gastro problems, as that did seem to be the side effect Dave got with interferon – and he didn't care for it much.
Let us know how your Dad makes out on his next set of scans.
Maria
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- November 1, 2011 at 8:42 pm
Thank you for replying. I believe that Dave's scan schedule will be the same (he will do the 42 days at the same dosage as your dad). I worry about gastro problems, as that did seem to be the side effect Dave got with interferon – and he didn't care for it much.
Let us know how your Dad makes out on his next set of scans.
Maria
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- October 31, 2011 at 4:48 pm
Maria,
My dad has been taking 160 mg temodar since May at 21 days on/ 7 days off. He was also on WBR to begin with, so his initial side effects probay were from both.
He lost a bit of his appetite, but most of it came back about 2 months post WBR, so he is eating fairly well. He lost about 20 pounds since all the treatments started, even though he is still on 2mg Decadron (for the brain swelling). He also takes the anti nausea pill (Promethazine 25mg) 1/2 hour prior to Temodar at bedtime, and has not really had any problems in that regard. He does still have a lot of fatigue, and usually has diarrhea in the mornings. I TRY to limit his coffee to 8 oz. and encourage him to eat gentle foods to control this, but he pitches a fit and I am just giving him 1/2 an immodium as needed. He is not an ideal patient in the sense of telling me his symptoms/ side effects until days after, so I don't always catch them soon enough to determine the cause.
Dad's tumors have definitely slowed down during Temodar treatment, though the results are still mixed – slight growth in some places (spleen, colon) with shrinkage in others (brain), and more or less stable in lungs. Dad has been getting scans approximately every 8 weeks or less; the next one is in a week.
I hope that you see good results on your next scan!
-DF
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- November 1, 2011 at 3:19 am
I was on Temodar 300 mg 5 days then 23 days off ( one week out of 28 days) It made me sick, vomited a lot if I didn't premed the day before. It kept things stable but didn't take any of it away. I was on it from July to March however it more than likely stopped in January or February.My doc says with some people it works longer but eventually melanoma finds it way around it. But it gave me time to get organized and found a better treatment. Realistically it buys time…but not a cure. I hope it works well and long for him. Lynn
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- November 1, 2011 at 8:53 pm
Thank you for replying Lynn. They did have some complete responders to the Temodar after failed HD-IL2, and I was surprised at how heavy of a tumor burden they had (2 of the 9 are still in complete remission and no longer doing treatment, 6 of the 9 are still alive with either cr or sd). That being said, this treatment wasn't Dave's first choice, but due to the steroids (he's down to 10mg/day) his only choice. We are hoping it will do exactly as said – slow it down until he can get on either Yervoy or and anti-pd1 drug. A compete remission would be the icing on the cake 🙂
Since being on the steroids for the eye issues, he is strictly doing desk work. No more manual labor for him, which he isn't too happy about.
Just hoping something works…
Maria
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- November 1, 2011 at 8:53 pm
Thank you for replying Lynn. They did have some complete responders to the Temodar after failed HD-IL2, and I was surprised at how heavy of a tumor burden they had (2 of the 9 are still in complete remission and no longer doing treatment, 6 of the 9 are still alive with either cr or sd). That being said, this treatment wasn't Dave's first choice, but due to the steroids (he's down to 10mg/day) his only choice. We are hoping it will do exactly as said – slow it down until he can get on either Yervoy or and anti-pd1 drug. A compete remission would be the icing on the cake 🙂
Since being on the steroids for the eye issues, he is strictly doing desk work. No more manual labor for him, which he isn't too happy about.
Just hoping something works…
Maria
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- November 1, 2011 at 8:53 pm
Thank you for replying Lynn. They did have some complete responders to the Temodar after failed HD-IL2, and I was surprised at how heavy of a tumor burden they had (2 of the 9 are still in complete remission and no longer doing treatment, 6 of the 9 are still alive with either cr or sd). That being said, this treatment wasn't Dave's first choice, but due to the steroids (he's down to 10mg/day) his only choice. We are hoping it will do exactly as said – slow it down until he can get on either Yervoy or and anti-pd1 drug. A compete remission would be the icing on the cake 🙂
Since being on the steroids for the eye issues, he is strictly doing desk work. No more manual labor for him, which he isn't too happy about.
Just hoping something works…
Maria
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- November 1, 2011 at 3:19 am
I was on Temodar 300 mg 5 days then 23 days off ( one week out of 28 days) It made me sick, vomited a lot if I didn't premed the day before. It kept things stable but didn't take any of it away. I was on it from July to March however it more than likely stopped in January or February.My doc says with some people it works longer but eventually melanoma finds it way around it. But it gave me time to get organized and found a better treatment. Realistically it buys time…but not a cure. I hope it works well and long for him. Lynn
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- November 1, 2011 at 3:19 am
I was on Temodar 300 mg 5 days then 23 days off ( one week out of 28 days) It made me sick, vomited a lot if I didn't premed the day before. It kept things stable but didn't take any of it away. I was on it from July to March however it more than likely stopped in January or February.My doc says with some people it works longer but eventually melanoma finds it way around it. But it gave me time to get organized and found a better treatment. Realistically it buys time…but not a cure. I hope it works well and long for him. Lynn
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