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- This topic has 15 replies, 5 voices, and was last updated 12 years, 10 months ago by
Tina D.
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- June 25, 2013 at 2:44 am
It's me again…….I have a couple questions. First off has anyone done Z with Ipi? Right now I"m on full dose Z, there were worries that it stopped working but I've been on full dose now for just over a week and I can feel the sub q on my arm going back down. I'm also feeling the other side effects, the bottom of my feet are killing me, slight nausea, but not as bad as before, and fatigue. All of the side effects are just fine with me if it's working again. I'd rather not talk about hospice right now.
It's me again…….I have a couple questions. First off has anyone done Z with Ipi? Right now I"m on full dose Z, there were worries that it stopped working but I've been on full dose now for just over a week and I can feel the sub q on my arm going back down. I'm also feeling the other side effects, the bottom of my feet are killing me, slight nausea, but not as bad as before, and fatigue. All of the side effects are just fine with me if it's working again. I'd rather not talk about hospice right now. Which really flares me up when I think about it. My doctor seriously upset me, I'm considering about getting a new Onc, it's a difficult decision because he's been there since day 1.
Anyway…..I'll be reducing Z back down to 1/2 dose the day I start Ipi. Just wondering if anyone has done this combo and what to expect.
On another note I was out staining some deck wood yesterday for about 10-15 minutes. The weather was total over cast, slight sprinkles of rain and I got sunburned!! We need a protective bubble on Z. Any help/advice on treating the burn would help too, I'm coated in Aloe Vera but doesn't seem to help
Thank You
Denise
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- June 25, 2013 at 4:09 am
I just read that they stopped the clinical trials for this combo due to liver toxicity. Well that's scary, but I am going forward. With reduced dosage of Z only 2 out of 6 developed liver toxicity. I've been taking a pretty high dosage of Reishi Mushroom supplements which protect the liver and can enhance the immune responses, according to Sloan Kettering website.
My brother in law sent me the Reishi mushroom supplements a couple of weeks ago, his friend who is a doctor suggested it. I read that is recognized by the Japanese government as a cancer fighting herb.
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- June 25, 2013 at 4:09 am
I just read that they stopped the clinical trials for this combo due to liver toxicity. Well that's scary, but I am going forward. With reduced dosage of Z only 2 out of 6 developed liver toxicity. I've been taking a pretty high dosage of Reishi Mushroom supplements which protect the liver and can enhance the immune responses, according to Sloan Kettering website.
My brother in law sent me the Reishi mushroom supplements a couple of weeks ago, his friend who is a doctor suggested it. I read that is recognized by the Japanese government as a cancer fighting herb.
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- June 25, 2013 at 4:09 am
I just read that they stopped the clinical trials for this combo due to liver toxicity. Well that's scary, but I am going forward. With reduced dosage of Z only 2 out of 6 developed liver toxicity. I've been taking a pretty high dosage of Reishi Mushroom supplements which protect the liver and can enhance the immune responses, according to Sloan Kettering website.
My brother in law sent me the Reishi mushroom supplements a couple of weeks ago, his friend who is a doctor suggested it. I read that is recognized by the Japanese government as a cancer fighting herb.
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- June 25, 2013 at 2:22 pm
Hi Denise,
As far as sunburn, I've read other posters here who've run into that.
Tina D posted about her Z side effects, including, "…DO be extremely careful abt the sun!! I burn in under 3 minutes. I stay out of direct sun and when going in and out I have to stay covered with sunscreen, a hat, a parasol and clothing. I am ordering a UV protective shirt to cover my arms when out. VERy VERy photosensitive and I think that even small amts of sun exposure can make the rash worse fairly quickly."
– Kyle
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- June 25, 2013 at 2:22 pm
Hi Denise,
As far as sunburn, I've read other posters here who've run into that.
Tina D posted about her Z side effects, including, "…DO be extremely careful abt the sun!! I burn in under 3 minutes. I stay out of direct sun and when going in and out I have to stay covered with sunscreen, a hat, a parasol and clothing. I am ordering a UV protective shirt to cover my arms when out. VERy VERy photosensitive and I think that even small amts of sun exposure can make the rash worse fairly quickly."
– Kyle
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- June 25, 2013 at 2:22 pm
Hi Denise,
As far as sunburn, I've read other posters here who've run into that.
Tina D posted about her Z side effects, including, "…DO be extremely careful abt the sun!! I burn in under 3 minutes. I stay out of direct sun and when going in and out I have to stay covered with sunscreen, a hat, a parasol and clothing. I am ordering a UV protective shirt to cover my arms when out. VERy VERy photosensitive and I think that even small amts of sun exposure can make the rash worse fairly quickly."
– Kyle
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- June 27, 2013 at 1:23 pm
Denise,
I did not take the two together, so cant help on that. But… that crazy photosensitivity, THAT I could relate to. I could literally not be in direct sun for more than a minute or two without getting fried. I took a towel in the car and held it to keep the sun from shining directly on me. Used sunscreen for babies liberally anytime I might be exposed, wore wide brimmed hats, carried a parasol. There are also sun-protection shirts and clothing that can be ordered. I know they will watch your labs closely while on the two drugs together. Wishing you all the best and a speedy response!!
Tina
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- June 27, 2013 at 1:23 pm
Denise,
I did not take the two together, so cant help on that. But… that crazy photosensitivity, THAT I could relate to. I could literally not be in direct sun for more than a minute or two without getting fried. I took a towel in the car and held it to keep the sun from shining directly on me. Used sunscreen for babies liberally anytime I might be exposed, wore wide brimmed hats, carried a parasol. There are also sun-protection shirts and clothing that can be ordered. I know they will watch your labs closely while on the two drugs together. Wishing you all the best and a speedy response!!
Tina
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- June 27, 2013 at 1:23 pm
Denise,
I did not take the two together, so cant help on that. But… that crazy photosensitivity, THAT I could relate to. I could literally not be in direct sun for more than a minute or two without getting fried. I took a towel in the car and held it to keep the sun from shining directly on me. Used sunscreen for babies liberally anytime I might be exposed, wore wide brimmed hats, carried a parasol. There are also sun-protection shirts and clothing that can be ordered. I know they will watch your labs closely while on the two drugs together. Wishing you all the best and a speedy response!!
Tina
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- June 25, 2013 at 4:23 am
Yes, Denise, there was a clinical trial to test the combination of ipi and Zelboraf but they stopped it early because too many patients developed liver toxicity. They never did find out what the combo did to the melanoma. In all cases, the toxicity was reversible and, as you say, you will be taking a lower dose of Zelboraf than the study used. But please do educate yourself about the symptoms of liver toxicity and call your oncologist immediately if you develop those symptoms.
Also, if you are taking any supplements, especially one that is supposed to affect the liver, PLEASE tell your oncologist immediately! Any supplements you take can screw up the way the Zelboraf is metabolized by the body and could result in big problems for you. So if you want to keep taking the Reishi supplements, make sure you clear it with your doctor.
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- June 25, 2013 at 4:23 am
Yes, Denise, there was a clinical trial to test the combination of ipi and Zelboraf but they stopped it early because too many patients developed liver toxicity. They never did find out what the combo did to the melanoma. In all cases, the toxicity was reversible and, as you say, you will be taking a lower dose of Zelboraf than the study used. But please do educate yourself about the symptoms of liver toxicity and call your oncologist immediately if you develop those symptoms.
Also, if you are taking any supplements, especially one that is supposed to affect the liver, PLEASE tell your oncologist immediately! Any supplements you take can screw up the way the Zelboraf is metabolized by the body and could result in big problems for you. So if you want to keep taking the Reishi supplements, make sure you clear it with your doctor.
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- June 25, 2013 at 4:23 am
Yes, Denise, there was a clinical trial to test the combination of ipi and Zelboraf but they stopped it early because too many patients developed liver toxicity. They never did find out what the combo did to the melanoma. In all cases, the toxicity was reversible and, as you say, you will be taking a lower dose of Zelboraf than the study used. But please do educate yourself about the symptoms of liver toxicity and call your oncologist immediately if you develop those symptoms.
Also, if you are taking any supplements, especially one that is supposed to affect the liver, PLEASE tell your oncologist immediately! Any supplements you take can screw up the way the Zelboraf is metabolized by the body and could result in big problems for you. So if you want to keep taking the Reishi supplements, make sure you clear it with your doctor.
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