› Forums › General Melanoma Community › Mom’s first day of trial tomorrow: epacadostat and opdivo
- This topic has 24 replies, 4 voices, and was last updated 7 years, 9 months ago by
jade1111.
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- July 7, 2016 at 2:36 am
Tomorrow is my moms first day of trail for Epacadostat and Opdivo (nivolumab).. We are nervous.. yet can I even use the word.. excited.. It has been 5-6 months since we found out about the stage 4.. and other then Gamma Knife a few weeks ago this will be the first treatment that addresses those invisible but seen on scans mets… Going from the information and diagnosing and planning stage to actual treatment….
Any suggestions for infusions.. what helped deal with nerves or helped with the after affects..
Also curious if anyone else on here has experience with epacadostat?
Best to all!!
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- July 7, 2016 at 2:50 am
It is a very relieving feeling to get started on a treatment. Your mom is going to UCSF, correct? The infusion clinic nurses at the Ida Friend infusion center (the infusion clinic in same building as melanoma center) are amazing. And the snack bar area is probably my favorite place. She will be in good hands during the infusion.
I don't know anything about epacadostat so I am not sure how that will make her feel. The immunotherapy drugs usually don't make you feel like much on infusion day other than tired… but that tiredness could just be from the whole ordeal of the day anyway.
I hope it goes smoothly for her!
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- July 7, 2016 at 2:50 am
It is a very relieving feeling to get started on a treatment. Your mom is going to UCSF, correct? The infusion clinic nurses at the Ida Friend infusion center (the infusion clinic in same building as melanoma center) are amazing. And the snack bar area is probably my favorite place. She will be in good hands during the infusion.
I don't know anything about epacadostat so I am not sure how that will make her feel. The immunotherapy drugs usually don't make you feel like much on infusion day other than tired… but that tiredness could just be from the whole ordeal of the day anyway.
I hope it goes smoothly for her!
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- July 7, 2016 at 4:10 am
Thank you! Things going as well as they can right now, nothing major, that's always good.
The oatmeal with honey is a pretty nice snack for the morning. The Miso soup in the afternoon is always good too…. it's the little things 🙂
(I was at Kaiser for my first infusion before switching insurance and being able to go to UCSF full time… the difference in the infusion clinics is incredible. Kaiser had no snacks, nothing but water. The nurses hardly smiled and acted as if they were very unhappy at work. Then, at UCSF, the nurses smile and I can tell they love their job. Plus, lots of yummy snacks and drinks like ginger ale, tea, and juice besides just water. Like going from Motel 6 to the Ritz, haha!)
Take care,
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- July 7, 2016 at 4:10 am
Thank you! Things going as well as they can right now, nothing major, that's always good.
The oatmeal with honey is a pretty nice snack for the morning. The Miso soup in the afternoon is always good too…. it's the little things 🙂
(I was at Kaiser for my first infusion before switching insurance and being able to go to UCSF full time… the difference in the infusion clinics is incredible. Kaiser had no snacks, nothing but water. The nurses hardly smiled and acted as if they were very unhappy at work. Then, at UCSF, the nurses smile and I can tell they love their job. Plus, lots of yummy snacks and drinks like ginger ale, tea, and juice besides just water. Like going from Motel 6 to the Ritz, haha!)
Take care,
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- July 7, 2016 at 4:10 am
Thank you! Things going as well as they can right now, nothing major, that's always good.
The oatmeal with honey is a pretty nice snack for the morning. The Miso soup in the afternoon is always good too…. it's the little things 🙂
(I was at Kaiser for my first infusion before switching insurance and being able to go to UCSF full time… the difference in the infusion clinics is incredible. Kaiser had no snacks, nothing but water. The nurses hardly smiled and acted as if they were very unhappy at work. Then, at UCSF, the nurses smile and I can tell they love their job. Plus, lots of yummy snacks and drinks like ginger ale, tea, and juice besides just water. Like going from Motel 6 to the Ritz, haha!)
Take care,
-
- July 7, 2016 at 2:50 am
It is a very relieving feeling to get started on a treatment. Your mom is going to UCSF, correct? The infusion clinic nurses at the Ida Friend infusion center (the infusion clinic in same building as melanoma center) are amazing. And the snack bar area is probably my favorite place. She will be in good hands during the infusion.
I don't know anything about epacadostat so I am not sure how that will make her feel. The immunotherapy drugs usually don't make you feel like much on infusion day other than tired… but that tiredness could just be from the whole ordeal of the day anyway.
I hope it goes smoothly for her!
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- July 7, 2016 at 3:22 am
Hi there – I never heard of epacadostat either, but I can share that when I got my first ipi/nivo infusion my husband said he saw my cancer cells escape through the curls of my hair and out of my body, and that helped :-)!! Some positive imagery of the powerful anticipated effect of the immunotherapy can't hurt!
BTW, I also had gamma knife before I could start the immuntherapy. Made it through my first year and I do believe the immunoterapy has kept things manageable. And yes, I was kinda excited to get started with the systematic treatment as well.
Best of luck to your mom!!!
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- July 7, 2016 at 3:59 am
Thanks MAria!! I like that image a lot and will read to my mom tomorrow. When we talked today I was encouraging her to imagine feeling great on it. Like a healthly juice!!!
epacodostat is a new med.. pase 1 of trial had good results.. think they are hoping that it can be a combo therapy without so many side effects. its a pill taken 2 day combined with biweekly infusions of opdivo
Appreciate the input! Thanks for mentioning you did Gamma Knife as well. So glad you responded to the combo therapy!!! Wishing you all the best!
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- July 7, 2016 at 12:07 pm
Is epacodostat an immunotherapy med? I will google to learn more.
Here's another little story for you about my first day of infusions. The day before I received a "mysterious" package in the mail, an old, used copy of a book entitled "Love, Medicine & Miracles" – mysterious because I couldn't tell who sent me this battered book. I grabbed it for reading material since the infusion was going to take many hours. That day, as I was hooked up to the IV, I started reading about how "exceptional patients" don't play victim, they are the "difficult" patients who ask questions, want to be educated about their illness, and want to partner with the doctors in their own care. Well that's me! According to the author, a surgeon who noticed patterns of behavior among his patients, the exceptional patient tends to live longer and/or get healed "miraculously." So while my husband's telling me he sees the cancer escaping through my curls, I'm reading how my "difficult" self is really "exceptional" all while getting the combo infusion. I felt very empowered that day!
Of course I hope the same for your mom today!
Here's a link to the book; I highly recommend it for infusion-day readings:
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- July 7, 2016 at 12:07 pm
Is epacodostat an immunotherapy med? I will google to learn more.
Here's another little story for you about my first day of infusions. The day before I received a "mysterious" package in the mail, an old, used copy of a book entitled "Love, Medicine & Miracles" – mysterious because I couldn't tell who sent me this battered book. I grabbed it for reading material since the infusion was going to take many hours. That day, as I was hooked up to the IV, I started reading about how "exceptional patients" don't play victim, they are the "difficult" patients who ask questions, want to be educated about their illness, and want to partner with the doctors in their own care. Well that's me! According to the author, a surgeon who noticed patterns of behavior among his patients, the exceptional patient tends to live longer and/or get healed "miraculously." So while my husband's telling me he sees the cancer escaping through my curls, I'm reading how my "difficult" self is really "exceptional" all while getting the combo infusion. I felt very empowered that day!
Of course I hope the same for your mom today!
Here's a link to the book; I highly recommend it for infusion-day readings:
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- July 8, 2016 at 5:33 pm
Maria, Epacadostat is an IDO inhibitor, my understanding is it has an effect in the tumor micro environment. It is very early days on data with the combination of IDO and Immunotherapy drugs. Best wishes!!!Ed
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- July 8, 2016 at 5:33 pm
Maria, Epacadostat is an IDO inhibitor, my understanding is it has an effect in the tumor micro environment. It is very early days on data with the combination of IDO and Immunotherapy drugs. Best wishes!!!Ed
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- July 8, 2016 at 5:33 pm
Maria, Epacadostat is an IDO inhibitor, my understanding is it has an effect in the tumor micro environment. It is very early days on data with the combination of IDO and Immunotherapy drugs. Best wishes!!!Ed
-
- July 7, 2016 at 12:07 pm
Is epacodostat an immunotherapy med? I will google to learn more.
Here's another little story for you about my first day of infusions. The day before I received a "mysterious" package in the mail, an old, used copy of a book entitled "Love, Medicine & Miracles" – mysterious because I couldn't tell who sent me this battered book. I grabbed it for reading material since the infusion was going to take many hours. That day, as I was hooked up to the IV, I started reading about how "exceptional patients" don't play victim, they are the "difficult" patients who ask questions, want to be educated about their illness, and want to partner with the doctors in their own care. Well that's me! According to the author, a surgeon who noticed patterns of behavior among his patients, the exceptional patient tends to live longer and/or get healed "miraculously." So while my husband's telling me he sees the cancer escaping through my curls, I'm reading how my "difficult" self is really "exceptional" all while getting the combo infusion. I felt very empowered that day!
Of course I hope the same for your mom today!
Here's a link to the book; I highly recommend it for infusion-day readings:
-
- July 7, 2016 at 3:59 am
Thanks MAria!! I like that image a lot and will read to my mom tomorrow. When we talked today I was encouraging her to imagine feeling great on it. Like a healthly juice!!!
epacodostat is a new med.. pase 1 of trial had good results.. think they are hoping that it can be a combo therapy without so many side effects. its a pill taken 2 day combined with biweekly infusions of opdivo
Appreciate the input! Thanks for mentioning you did Gamma Knife as well. So glad you responded to the combo therapy!!! Wishing you all the best!
-
- July 7, 2016 at 3:59 am
Thanks MAria!! I like that image a lot and will read to my mom tomorrow. When we talked today I was encouraging her to imagine feeling great on it. Like a healthly juice!!!
epacodostat is a new med.. pase 1 of trial had good results.. think they are hoping that it can be a combo therapy without so many side effects. its a pill taken 2 day combined with biweekly infusions of opdivo
Appreciate the input! Thanks for mentioning you did Gamma Knife as well. So glad you responded to the combo therapy!!! Wishing you all the best!
-
- July 7, 2016 at 3:22 am
Hi there – I never heard of epacadostat either, but I can share that when I got my first ipi/nivo infusion my husband said he saw my cancer cells escape through the curls of my hair and out of my body, and that helped :-)!! Some positive imagery of the powerful anticipated effect of the immunotherapy can't hurt!
BTW, I also had gamma knife before I could start the immuntherapy. Made it through my first year and I do believe the immunoterapy has kept things manageable. And yes, I was kinda excited to get started with the systematic treatment as well.
Best of luck to your mom!!!
-
- July 7, 2016 at 3:22 am
Hi there – I never heard of epacadostat either, but I can share that when I got my first ipi/nivo infusion my husband said he saw my cancer cells escape through the curls of my hair and out of my body, and that helped :-)!! Some positive imagery of the powerful anticipated effect of the immunotherapy can't hurt!
BTW, I also had gamma knife before I could start the immuntherapy. Made it through my first year and I do believe the immunoterapy has kept things manageable. And yes, I was kinda excited to get started with the systematic treatment as well.
Best of luck to your mom!!!
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