› Forums › General Melanoma Community › Watch out Yervoy, here I come..
- This topic has 21 replies, 6 voices, and was last updated 13 years, 2 months ago by
j.m.l..
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- January 7, 2012 at 4:15 am
I had my apt with a melanoma Onc and, Dr Hutchins in Ar, and she did not hassitate to suggest Yervoy as my new treatment. With so much chemo experience under my belt she told me that Yervoy would be a breeze for me to tollerate. I am having a hard time believing that, but that's not stopping me from moving forward with the treatment. I am ready to move on with my life and excited to start.
I had my apt with a melanoma Onc and, Dr Hutchins in Ar, and she did not hassitate to suggest Yervoy as my new treatment. With so much chemo experience under my belt she told me that Yervoy would be a breeze for me to tollerate. I am having a hard time believing that, but that's not stopping me from moving forward with the treatment. I am ready to move on with my life and excited to start.
She told me that there were only 2 side effects that would kick me off Yervoy, Colitis and Inflamation of Hormone glans. She also said the most common side effect was itching.
I am a full time student trying to achieve my BS and when I brought up the blurry vision or discoloration of the skin she shot those side effects down saying that they were a myth. I have struggled for 2 years taking DTIC and going to school full time. I didn't want to start Yervoy and be worrying about papers or group projects at the same time. Her suggestion was to stay in school while taking the Yervoy.
Needless to say, I dropped my classed this semester after reading your posts. I just don't want to worry about anything but dealing with the treatment. It is very hard for me to believe that I will not be effected physically or mentally by Yervoy.
Did your Onc tell you the same info?
-Rona
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- January 8, 2012 at 1:33 am
Hi Rona.
As I'm sure you know, everyone responds differently. You never know what to expect. I was able to work full time during Yervoy. My side effects were very minor. I had some fatigue, itching, some diharrea, and heartburn. I did later have some blurry vision, but it was a result of elevated pressures in my eyes which had to be treated with drops. I did have a little nausea and lack of appetite as well.
I can tell you that while I was perfectly able to work, there were definitely some days where I was tired or having stomach problems, etc. and I really wished I wasn't working. There is something to be said for not having any responsibilities while on treatment and just having to focus on getting through treatment and taking care of yourself.
Best of luck to you!
~Angela
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- January 8, 2012 at 1:33 am
Hi Rona.
As I'm sure you know, everyone responds differently. You never know what to expect. I was able to work full time during Yervoy. My side effects were very minor. I had some fatigue, itching, some diharrea, and heartburn. I did later have some blurry vision, but it was a result of elevated pressures in my eyes which had to be treated with drops. I did have a little nausea and lack of appetite as well.
I can tell you that while I was perfectly able to work, there were definitely some days where I was tired or having stomach problems, etc. and I really wished I wasn't working. There is something to be said for not having any responsibilities while on treatment and just having to focus on getting through treatment and taking care of yourself.
Best of luck to you!
~Angela
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- January 8, 2012 at 1:33 am
Hi Rona.
As I'm sure you know, everyone responds differently. You never know what to expect. I was able to work full time during Yervoy. My side effects were very minor. I had some fatigue, itching, some diharrea, and heartburn. I did later have some blurry vision, but it was a result of elevated pressures in my eyes which had to be treated with drops. I did have a little nausea and lack of appetite as well.
I can tell you that while I was perfectly able to work, there were definitely some days where I was tired or having stomach problems, etc. and I really wished I wasn't working. There is something to be said for not having any responsibilities while on treatment and just having to focus on getting through treatment and taking care of yourself.
Best of luck to you!
~Angela
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- January 8, 2012 at 3:25 am
Everybody's body is DIFFERENT! Others on here had to stop Yervoy due to problems with colitis, etc.
Others like myself, NOT A SINGLE SIDE EFFECT during treatments! Honestly i never even felt like I was getting a treatment, it was painless injection for an 1 hr 30 minutes, and I'd be tired when I got home each time (since I was up at 5am each time and got home at 5pm), but never had a single side effect. No bowel problems (that's their #1 concern all the time, lol, if you've had bowel problems!?), no itching, nothing!
And somehow, someway…it WORKED for me the 1st scan in December 2011, my spots had shrunk from 6cm, down to almost nothing in my liver & lung and my Brain was still all clear (after having a Craniotomy on a giant tumor above my eye & Gamma Knife on another tumor).
I wish you the best on the treatment, I hope you are side effect FREE, and make it thru easily, and I hope it WORKS for you!
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- January 8, 2012 at 2:31 pm
I had no symptoms on ipi either – except for itching after each infusion and a rash. On November 30th, my scans were great with some shrinking and disappearing. I have a nervewracking scan next week and the week after, so I'm getting very nervous.
I finished ipi 3 months ago and now just got a mild stomach problem which is being handled by pills. Everybody is very different – even it you never had symptoms during, you can get problems later – but that just means your immune system is working. Don't worry. I hope everything goes great!
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- January 9, 2012 at 12:11 am
Hi Rona,
Everyone else knows I'm a broken record on this, but I know it to be true.
If you experience several bowel movements per day, regardless of if there's blood or not, the PROPER PROTACOL, straight from the manufacturer and the instructions EVERY Yervoy-subscribing doctor gets, is NOT Immodium, but Budesonide (Brand name Entocort EC) it's a steroid that's not systemic, so unlike other steroids used to treat Yervoy side-effects, (it only works in the gut to reduce inflamation and stop the diarhhea) would not necessitate stopping the Yervoy infusions. I experienced horrible diahhrea on Ipi, took the Budesonide, and never missed an infusion.
good luck to you!
all the best,
karen
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- January 9, 2012 at 12:11 am
Hi Rona,
Everyone else knows I'm a broken record on this, but I know it to be true.
If you experience several bowel movements per day, regardless of if there's blood or not, the PROPER PROTACOL, straight from the manufacturer and the instructions EVERY Yervoy-subscribing doctor gets, is NOT Immodium, but Budesonide (Brand name Entocort EC) it's a steroid that's not systemic, so unlike other steroids used to treat Yervoy side-effects, (it only works in the gut to reduce inflamation and stop the diarhhea) would not necessitate stopping the Yervoy infusions. I experienced horrible diahhrea on Ipi, took the Budesonide, and never missed an infusion.
good luck to you!
all the best,
karen
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- January 9, 2012 at 12:11 am
Hi Rona,
Everyone else knows I'm a broken record on this, but I know it to be true.
If you experience several bowel movements per day, regardless of if there's blood or not, the PROPER PROTACOL, straight from the manufacturer and the instructions EVERY Yervoy-subscribing doctor gets, is NOT Immodium, but Budesonide (Brand name Entocort EC) it's a steroid that's not systemic, so unlike other steroids used to treat Yervoy side-effects, (it only works in the gut to reduce inflamation and stop the diarhhea) would not necessitate stopping the Yervoy infusions. I experienced horrible diahhrea on Ipi, took the Budesonide, and never missed an infusion.
good luck to you!
all the best,
karen
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- January 8, 2012 at 2:31 pm
I had no symptoms on ipi either – except for itching after each infusion and a rash. On November 30th, my scans were great with some shrinking and disappearing. I have a nervewracking scan next week and the week after, so I'm getting very nervous.
I finished ipi 3 months ago and now just got a mild stomach problem which is being handled by pills. Everybody is very different – even it you never had symptoms during, you can get problems later – but that just means your immune system is working. Don't worry. I hope everything goes great!
-
- January 8, 2012 at 2:31 pm
I had no symptoms on ipi either – except for itching after each infusion and a rash. On November 30th, my scans were great with some shrinking and disappearing. I have a nervewracking scan next week and the week after, so I'm getting very nervous.
I finished ipi 3 months ago and now just got a mild stomach problem which is being handled by pills. Everybody is very different – even it you never had symptoms during, you can get problems later – but that just means your immune system is working. Don't worry. I hope everything goes great!
-
- January 8, 2012 at 3:25 am
Everybody's body is DIFFERENT! Others on here had to stop Yervoy due to problems with colitis, etc.
Others like myself, NOT A SINGLE SIDE EFFECT during treatments! Honestly i never even felt like I was getting a treatment, it was painless injection for an 1 hr 30 minutes, and I'd be tired when I got home each time (since I was up at 5am each time and got home at 5pm), but never had a single side effect. No bowel problems (that's their #1 concern all the time, lol, if you've had bowel problems!?), no itching, nothing!
And somehow, someway…it WORKED for me the 1st scan in December 2011, my spots had shrunk from 6cm, down to almost nothing in my liver & lung and my Brain was still all clear (after having a Craniotomy on a giant tumor above my eye & Gamma Knife on another tumor).
I wish you the best on the treatment, I hope you are side effect FREE, and make it thru easily, and I hope it WORKS for you!
-
- January 8, 2012 at 3:25 am
Everybody's body is DIFFERENT! Others on here had to stop Yervoy due to problems with colitis, etc.
Others like myself, NOT A SINGLE SIDE EFFECT during treatments! Honestly i never even felt like I was getting a treatment, it was painless injection for an 1 hr 30 minutes, and I'd be tired when I got home each time (since I was up at 5am each time and got home at 5pm), but never had a single side effect. No bowel problems (that's their #1 concern all the time, lol, if you've had bowel problems!?), no itching, nothing!
And somehow, someway…it WORKED for me the 1st scan in December 2011, my spots had shrunk from 6cm, down to almost nothing in my liver & lung and my Brain was still all clear (after having a Craniotomy on a giant tumor above my eye & Gamma Knife on another tumor).
I wish you the best on the treatment, I hope you are side effect FREE, and make it thru easily, and I hope it WORKS for you!
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- January 9, 2012 at 12:27 am
I go for my 3rd ipi treatment this Thursday and so far no side effects. Not sure if that is good or bad. Anyway, what I wanted to say was that I did a lot better in college when I was older: flunked out in my teens, made the Deans List in my late 20's. Do what you gotta do and best of luck!
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- January 9, 2012 at 12:27 am
I go for my 3rd ipi treatment this Thursday and so far no side effects. Not sure if that is good or bad. Anyway, what I wanted to say was that I did a lot better in college when I was older: flunked out in my teens, made the Deans List in my late 20's. Do what you gotta do and best of luck!
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- January 9, 2012 at 12:27 am
I go for my 3rd ipi treatment this Thursday and so far no side effects. Not sure if that is good or bad. Anyway, what I wanted to say was that I did a lot better in college when I was older: flunked out in my teens, made the Deans List in my late 20's. Do what you gotta do and best of luck!
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- January 9, 2012 at 7:54 am
good luck to you
as others have said, everyone reacts differently. For me, ipi did not work at all but did leave me with every side effect in the book. Headaches, very blurry vision, weakness, lack of concentration, you name it. I had to go on high dose steroids which has its own effects.
Did nt work for me, but good luck to you and only you have to decide what to do. IPI does sound like a good drug to use.
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- January 9, 2012 at 7:54 am
good luck to you
as others have said, everyone reacts differently. For me, ipi did not work at all but did leave me with every side effect in the book. Headaches, very blurry vision, weakness, lack of concentration, you name it. I had to go on high dose steroids which has its own effects.
Did nt work for me, but good luck to you and only you have to decide what to do. IPI does sound like a good drug to use.
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- January 9, 2012 at 7:54 am
good luck to you
as others have said, everyone reacts differently. For me, ipi did not work at all but did leave me with every side effect in the book. Headaches, very blurry vision, weakness, lack of concentration, you name it. I had to go on high dose steroids which has its own effects.
Did nt work for me, but good luck to you and only you have to decide what to do. IPI does sound like a good drug to use.
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- January 9, 2012 at 7:55 am
good luck to you
as others have said, everyone reacts differently. For me, ipi did not work at all but did leave me with every side effect in the book. Headaches, very blurry vision, weakness, lack of concentration, you name it. I had to go on high dose steroids which has its own effects.
Did nt work for me, but good luck to you and only you have to decide what to do. IPI does sound like a good drug to use.
-
- January 9, 2012 at 7:55 am
good luck to you
as others have said, everyone reacts differently. For me, ipi did not work at all but did leave me with every side effect in the book. Headaches, very blurry vision, weakness, lack of concentration, you name it. I had to go on high dose steroids which has its own effects.
Did nt work for me, but good luck to you and only you have to decide what to do. IPI does sound like a good drug to use.
-
- January 9, 2012 at 7:55 am
good luck to you
as others have said, everyone reacts differently. For me, ipi did not work at all but did leave me with every side effect in the book. Headaches, very blurry vision, weakness, lack of concentration, you name it. I had to go on high dose steroids which has its own effects.
Did nt work for me, but good luck to you and only you have to decide what to do. IPI does sound like a good drug to use.
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