› Forums › General Melanoma Community › Combo.. IPI/Nivo.. Side effects?
- This topic has 12 replies, 3 voices, and was last updated 7 years, 11 months ago by jade1111.
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- May 25, 2016 at 4:08 pm
Hello
So my mom went to UCSF yesterday and based on what they described as a "super" low T cell count they were recommending combo. She was all set to continue with the Nivo/Epacadostat trial. We did not have much time to decide but decided to go with trail. However she woke up this morning stressed and wondering if she should do the combo. Big fear about the combo is side effects… She is 71 and in Ok health.. currently not very symptomatic. These decisions are rough. The trial is more involved in terms of time..
Anyway just looking for feedback on the combo and side effects. Have read some of other posts here.. as you know somtimes more information just feels better and looking for that AHA moment..
Thanks so much!!!
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- May 25, 2016 at 4:46 pm
Looking and hearing about side effects can get overwhelming and scary. Best thing to remember is everyone reacts to drugs differently. Some get minor side effects, some get major ones. There is just no telling which boat you'll be in until you jump in. Ipi is really the part of the combo that gives most people problems. I am doing Ipi alone at a higher dosage than what stage 4 get… because that's what researchers decided was best for stage 3. I have had very minor side effects from Ipi: fatigue, mildly itchy skin, joint inflammation, ringing in ears due to inflammation, acid reflux. All easy to deal with stuff.
Others will tell you their experiences and you'll see how much it varies. The combo is wonderful and has done many great things for people. The trial would have its own list of side effects as well, and it's the same idea, you'd have no clue how her body will react to it until she tries it. With any treatment, she would need to keep her doctor in the loop about any side effects, anything that comes up can be treated quickly. I also go to UCSF for treatment, the oncs there are very knowledgable about all of the possible side effects and how to treat them, so don't be too afraid about all the possibilities. Just look forward to your mom getting well.
All the best,
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- May 25, 2016 at 6:36 pm
Thanks so much for your thoughtful and insightful reply. I read it to my mom and it helped! Very good perpective! I did not know that they recommended higher dosage of IPI at stage 3. Interesting. All the best to you! Sounds like your heading in the right direction.. And yes they are super smart at UCSF :0)
Thanks again!!!
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- May 25, 2016 at 6:36 pm
Thanks so much for your thoughtful and insightful reply. I read it to my mom and it helped! Very good perpective! I did not know that they recommended higher dosage of IPI at stage 3. Interesting. All the best to you! Sounds like your heading in the right direction.. And yes they are super smart at UCSF :0)
Thanks again!!!
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- May 25, 2016 at 6:36 pm
Thanks so much for your thoughtful and insightful reply. I read it to my mom and it helped! Very good perpective! I did not know that they recommended higher dosage of IPI at stage 3. Interesting. All the best to you! Sounds like your heading in the right direction.. And yes they are super smart at UCSF :0)
Thanks again!!!
-
- May 25, 2016 at 4:46 pm
Looking and hearing about side effects can get overwhelming and scary. Best thing to remember is everyone reacts to drugs differently. Some get minor side effects, some get major ones. There is just no telling which boat you'll be in until you jump in. Ipi is really the part of the combo that gives most people problems. I am doing Ipi alone at a higher dosage than what stage 4 get… because that's what researchers decided was best for stage 3. I have had very minor side effects from Ipi: fatigue, mildly itchy skin, joint inflammation, ringing in ears due to inflammation, acid reflux. All easy to deal with stuff.
Others will tell you their experiences and you'll see how much it varies. The combo is wonderful and has done many great things for people. The trial would have its own list of side effects as well, and it's the same idea, you'd have no clue how her body will react to it until she tries it. With any treatment, she would need to keep her doctor in the loop about any side effects, anything that comes up can be treated quickly. I also go to UCSF for treatment, the oncs there are very knowledgable about all of the possible side effects and how to treat them, so don't be too afraid about all the possibilities. Just look forward to your mom getting well.
All the best,
-
- May 25, 2016 at 4:46 pm
Looking and hearing about side effects can get overwhelming and scary. Best thing to remember is everyone reacts to drugs differently. Some get minor side effects, some get major ones. There is just no telling which boat you'll be in until you jump in. Ipi is really the part of the combo that gives most people problems. I am doing Ipi alone at a higher dosage than what stage 4 get… because that's what researchers decided was best for stage 3. I have had very minor side effects from Ipi: fatigue, mildly itchy skin, joint inflammation, ringing in ears due to inflammation, acid reflux. All easy to deal with stuff.
Others will tell you their experiences and you'll see how much it varies. The combo is wonderful and has done many great things for people. The trial would have its own list of side effects as well, and it's the same idea, you'd have no clue how her body will react to it until she tries it. With any treatment, she would need to keep her doctor in the loop about any side effects, anything that comes up can be treated quickly. I also go to UCSF for treatment, the oncs there are very knowledgable about all of the possible side effects and how to treat them, so don't be too afraid about all the possibilities. Just look forward to your mom getting well.
All the best,
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- May 26, 2016 at 1:45 pm
As was previously stated each person has different side effects to each drug. My husband was Stage IV and was on Ipi alone at 10 mg/kg and GMCSF. He was not on the same combo as your mother was offered. He took the initial 4 treatments in 12 weeks and then maintenance doses every 12 weeks for an additional 2.5 years. He had very small side effects and if you would like to read more check out his profile. He has been NED (no evidence of disease for over 3.5 years now.
Judy (loving wife of Gene Stage IV and now NED)
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- May 26, 2016 at 1:45 pm
As was previously stated each person has different side effects to each drug. My husband was Stage IV and was on Ipi alone at 10 mg/kg and GMCSF. He was not on the same combo as your mother was offered. He took the initial 4 treatments in 12 weeks and then maintenance doses every 12 weeks for an additional 2.5 years. He had very small side effects and if you would like to read more check out his profile. He has been NED (no evidence of disease for over 3.5 years now.
Judy (loving wife of Gene Stage IV and now NED)
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- May 26, 2016 at 1:45 pm
As was previously stated each person has different side effects to each drug. My husband was Stage IV and was on Ipi alone at 10 mg/kg and GMCSF. He was not on the same combo as your mother was offered. He took the initial 4 treatments in 12 weeks and then maintenance doses every 12 weeks for an additional 2.5 years. He had very small side effects and if you would like to read more check out his profile. He has been NED (no evidence of disease for over 3.5 years now.
Judy (loving wife of Gene Stage IV and now NED)
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