› Forums › General Melanoma Community › My wife starts on Temodar tonight
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LBN.
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- July 7, 2011 at 12:23 pm
We are down to very few options for my wife (Stage V, brain involvement, lung and skin mets, internal organ mets likely) and this seems a pretty low impact, not much downside option. Because of her recent brain surgery and seizures and the fact she is on so many anti-seizure meds and steroids the onc is adamantly opposed for the time being to put her on IL-2 – too toxic.
We are down to very few options for my wife (Stage V, brain involvement, lung and skin mets, internal organ mets likely) and this seems a pretty low impact, not much downside option. Because of her recent brain surgery and seizures and the fact she is on so many anti-seizure meds and steroids the onc is adamantly opposed for the time being to put her on IL-2 – too toxic. All the places I've contacted about clinical trials – especially the ones doing TIL for HLA-2 mutation – have said no thanks due to her seizure history, don't want to screw up their trial results I suppose.
I'm curious for those who have tried Temodar if there has been any hair loss? It seems a low occurrence side effect – but she is already not happy about the hair loss from her Cyberknife treatment, even though she looks great in her wig, you woudn't even know.
From what I've read about chemo treatments it appears if it has an impact, the usual pattern is some reduction in tumors for a period of time, then continued progression – so you are just buying some time at a not bad reduction in quality of life – so a pretty good trade off. I haven't found much about long term durable remissions with chemo or Temodar specifically. Any evidence out there I am unaware of about long term success? She isn't doing any combo treatment yet involving multiple drugs or chemo/immuno drugs – again related to toxicity and her particlar situation with the drugs she is on and seizure history.
Nick
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- July 7, 2011 at 12:40 pm
Hi Nick
Our son had hair thinning rather than loss of hair with Temador, however it did only slow things for a little before progression. Having said that i have read others have had great response from Temador.
I have read that some of the Inhibitors like Braf and Mek have less side effects, also noticed a new Trial of E7080, another Inhibitor you might ask about. Some incredible stories out there on all these drugs, i wish one drug worked for all but it appears you've got to keep trying until you find the right one.
best wishes
James
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- July 7, 2011 at 12:40 pm
Hi Nick
Our son had hair thinning rather than loss of hair with Temador, however it did only slow things for a little before progression. Having said that i have read others have had great response from Temador.
I have read that some of the Inhibitors like Braf and Mek have less side effects, also noticed a new Trial of E7080, another Inhibitor you might ask about. Some incredible stories out there on all these drugs, i wish one drug worked for all but it appears you've got to keep trying until you find the right one.
best wishes
James
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- July 7, 2011 at 1:16 pm
I was on a six month course of temodar in combo with carboplatin and taxol so it's hard to know what side effects came from what. I took temodar orally for five days starting the second day after infusion. To reduce the impact on me, I took it in the evening before bed and about a half hour after I took the anti-nausea and steroid meds. That way I slept through the worst of the effects.
The main thing I can tell you for sure is that it affected my desire to eat. I kept a lot of small nourishing snack type things around that I could talk myself into eating through the day. Comfort foods were great then – like mac and cheese, pudding, ice cream and so on. It really affected my taste and I was oddly drawn to spicy foods. My husband made me a pot of TexMex chilli and corn bread during one course and that was a great treat!
During the whole treatment I craved salty and fat heavy foods and my nutritionist said that was most likely due to my body's efforts to rebuild bone marrow and blood. I figured eating 'healthy' wasn't nearly as important as getting some kind of nourishment in me and she agreed with that totally and told me to eat whatever my body wanted.
Two days after the last pill I would wake up with a craving for a cheeseburger and fries and I would know I was on the way back! I don't know if it actually affected my appetite or that it made things taste weird. Just in case, be prepared with your wife's favorite treats and comfort foods so that you can keep her eating.
My motto throughout was 'Eat as much as you can whenever you can!' It worked really well and I actually gained a pound or two between each treatment right up to the last two when I lost weight but not enough to cause any problems.
Like I said, I can't sort out what caused what for the most part but my most common side effects during and after the temodar was fatigue, a feeling of weakness in my joints (knees and hips mostly) and neuropathy, especially in my feet at night. I found that taking a xanax when I went to bed greatly reduced the pain and discomfort of the neuropathy in my feet.
Please continue to let us know how she is doing.
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- July 7, 2011 at 1:16 pm
I was on a six month course of temodar in combo with carboplatin and taxol so it's hard to know what side effects came from what. I took temodar orally for five days starting the second day after infusion. To reduce the impact on me, I took it in the evening before bed and about a half hour after I took the anti-nausea and steroid meds. That way I slept through the worst of the effects.
The main thing I can tell you for sure is that it affected my desire to eat. I kept a lot of small nourishing snack type things around that I could talk myself into eating through the day. Comfort foods were great then – like mac and cheese, pudding, ice cream and so on. It really affected my taste and I was oddly drawn to spicy foods. My husband made me a pot of TexMex chilli and corn bread during one course and that was a great treat!
During the whole treatment I craved salty and fat heavy foods and my nutritionist said that was most likely due to my body's efforts to rebuild bone marrow and blood. I figured eating 'healthy' wasn't nearly as important as getting some kind of nourishment in me and she agreed with that totally and told me to eat whatever my body wanted.
Two days after the last pill I would wake up with a craving for a cheeseburger and fries and I would know I was on the way back! I don't know if it actually affected my appetite or that it made things taste weird. Just in case, be prepared with your wife's favorite treats and comfort foods so that you can keep her eating.
My motto throughout was 'Eat as much as you can whenever you can!' It worked really well and I actually gained a pound or two between each treatment right up to the last two when I lost weight but not enough to cause any problems.
Like I said, I can't sort out what caused what for the most part but my most common side effects during and after the temodar was fatigue, a feeling of weakness in my joints (knees and hips mostly) and neuropathy, especially in my feet at night. I found that taking a xanax when I went to bed greatly reduced the pain and discomfort of the neuropathy in my feet.
Please continue to let us know how she is doing.
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- July 8, 2011 at 12:09 am
Hi Nick,
I had a full and durable response to Temodar taken for one lung met which could not be surgically removed . I did 10 rounds (250mg 5 days on/ 3 weeks off) in 2007 and have remained NED since that time. I did not have any hair loss and as long as I stopped eating at 6, took anti-nausea drug at 9 and Temodar at 10, I had no problems with nausea. Feel free to e-mail me if you and your wife have any questions. Very best of luck, Nancy Mills
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- July 8, 2011 at 12:09 am
Hi Nick,
I had a full and durable response to Temodar taken for one lung met which could not be surgically removed . I did 10 rounds (250mg 5 days on/ 3 weeks off) in 2007 and have remained NED since that time. I did not have any hair loss and as long as I stopped eating at 6, took anti-nausea drug at 9 and Temodar at 10, I had no problems with nausea. Feel free to e-mail me if you and your wife have any questions. Very best of luck, Nancy Mills
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- July 8, 2011 at 3:04 am
Diagnosed stage IV in Feb. of '05, I started taking Temodar in April '05 after gamma knife surgeries (2). Worked up to 360 mg for 5 days on a 23 day cycle. Continued this regime (off 2 months for lung removal) for 16 rounds. I saw immediate response and reduction in all visible tumors (7 total)- (lung met was necrotic when removed in Oct.'05).
I didn't lose much hair. Side effects were minimal, kept under control by Zophran…some constipation and fatigue. I would consider myself a durable remission since it has been 6 years since any more outbreaks- it's worth a try, for your wife. I hope that she sees good results too.
The best to you,
Karen
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- July 8, 2011 at 3:04 am
Diagnosed stage IV in Feb. of '05, I started taking Temodar in April '05 after gamma knife surgeries (2). Worked up to 360 mg for 5 days on a 23 day cycle. Continued this regime (off 2 months for lung removal) for 16 rounds. I saw immediate response and reduction in all visible tumors (7 total)- (lung met was necrotic when removed in Oct.'05).
I didn't lose much hair. Side effects were minimal, kept under control by Zophran…some constipation and fatigue. I would consider myself a durable remission since it has been 6 years since any more outbreaks- it's worth a try, for your wife. I hope that she sees good results too.
The best to you,
Karen
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- July 9, 2011 at 6:17 pm
I have just started Temodor. I have only been on it for 3 days so far and have yet to have any significant side effects. I am Stage 4 with hundreds of subcuteneous and cuteneous tumors one leg, bone mets and 2 brain stem mets. I have undergone one brain radiosurgey and will have my next one next week. I have failed on three trials so far – MART 1, ipi and now braf. I am curious to see what responses you get to the temodor question. They have me on for 6 weeks and then off for two. Keep us posted on how this works for your wife.
Laurie
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- July 9, 2011 at 6:17 pm
I have just started Temodor. I have only been on it for 3 days so far and have yet to have any significant side effects. I am Stage 4 with hundreds of subcuteneous and cuteneous tumors one leg, bone mets and 2 brain stem mets. I have undergone one brain radiosurgey and will have my next one next week. I have failed on three trials so far – MART 1, ipi and now braf. I am curious to see what responses you get to the temodor question. They have me on for 6 weeks and then off for two. Keep us posted on how this works for your wife.
Laurie
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