› Forums › Ocular Melanoma Community › Adjuvant Ipi: 30 months NED
- This topic has 27 replies, 7 voices, and was last updated 8 years, 9 months ago by gregor913.
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- January 9, 2016 at 5:36 pm
Given the recent FDA approval of adjuvant Ipi, I wanted to let people know my husband has been NED now for 30 months since starting the IPi vs Interferon trial. He was in the 3mg/kg arm of Ipi. He only received the 4 induction doses due to side effects. He is stage IIIC (T4bn2cM0- with deep amelanotic nodular lesion). He had rash and itching beginning after the first dose (and then ongoing which was treated with topical steroid and benadrly), ocular (after 3rd dose-resolved with steroid drops). and He also started with minor diarrhea after 3rd dose which coninued on and off managed by Immodium. Following the 4th dose he developed hypophysitis. He was treated with high dose steroids and all his hormones returned to normal. However, after his taper from steroids he went into adrenal crisis and has been steroid dependant ever since (due to adrenal insufficiency). It took a little over a year for the dosage required to stabilize (required higher dosage of hydrocortisone over time). He is currently doing really well and is very thankful for the trial option.
I wish all of you starting on Ipi the best. Report all side effects even if they appear minor to your oncologist right away. Make sure you are being treated by a melanoma specialist with experience treating these side effects.
Kate
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- January 10, 2016 at 1:19 am
Thanks for sharing!!! I go for round 2 Monday. Round 1 was pretty good but I know that can change at anytime!!
Misty
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- January 10, 2016 at 3:16 pm
Wonderful news! Thank you for sharing, Kate!
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- January 10, 2016 at 3:16 pm
Wonderful news! Thank you for sharing, Kate!
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- January 10, 2016 at 3:16 pm
Wonderful news! Thank you for sharing, Kate!
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- January 12, 2016 at 9:20 pm
Thanks for the post. Im currently taking ippi but I might have to have the second dose postponed by one week which my doctor said is not a big deal.( 10mg) I caught a virus from my daughter and tested positive for adeno virus that gave me fever for 7 days, sore throat, and terrible congestion. My next scheduled dose is the 18th. Do I think I can do it yes. But Im going to go on caution and wait one more week to get fully better since I can start to breathe out of my nose finally. Just a reminder to all people on ippi. You can get sick very easily. I recommend wearing a mask in public because this cold really ripped through me hard.
I was thinking about the dosages compared to 3mg and 10mg. If i did the 3mg dose my total medicine would be 1076mg. Since Im doing the 10mg dose it will be alot higher. My first dose alone was 910mg. That is almost the equivillant to all 3mg doses.
Cant wait to jump back into this yervoy medicine
Greg
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- January 12, 2016 at 9:20 pm
Thanks for the post. Im currently taking ippi but I might have to have the second dose postponed by one week which my doctor said is not a big deal.( 10mg) I caught a virus from my daughter and tested positive for adeno virus that gave me fever for 7 days, sore throat, and terrible congestion. My next scheduled dose is the 18th. Do I think I can do it yes. But Im going to go on caution and wait one more week to get fully better since I can start to breathe out of my nose finally. Just a reminder to all people on ippi. You can get sick very easily. I recommend wearing a mask in public because this cold really ripped through me hard.
I was thinking about the dosages compared to 3mg and 10mg. If i did the 3mg dose my total medicine would be 1076mg. Since Im doing the 10mg dose it will be alot higher. My first dose alone was 910mg. That is almost the equivillant to all 3mg doses.
Cant wait to jump back into this yervoy medicine
Greg
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- January 13, 2016 at 5:56 am
I would encourage anyone not to stop ipi due to itching.it can be managed and it is a universal side effect. My husband is 2 years NED. The itching goes away after stopping ipi. The itching is a sign that your immune system is getting stimulated. Hang in there!
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- January 13, 2016 at 5:56 am
I would encourage anyone not to stop ipi due to itching.it can be managed and it is a universal side effect. My husband is 2 years NED. The itching goes away after stopping ipi. The itching is a sign that your immune system is getting stimulated. Hang in there!
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- January 13, 2016 at 5:56 am
I would encourage anyone not to stop ipi due to itching.it can be managed and it is a universal side effect. My husband is 2 years NED. The itching goes away after stopping ipi. The itching is a sign that your immune system is getting stimulated. Hang in there!
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- February 5, 2016 at 2:36 am
Well I said be careful of germs. I got sick with a viral cold and my onc said it was like the perfect storm yervoy and a virus. It was like x10. But since the cold is done my second infusion went well. I’ve really had no side effects except some days being a little tired. Also probiotics and goat milk soap for the skin. I think that really helped me out so far too. I got it from amazon. Good luck greg -
- February 5, 2016 at 2:36 am
Well I said be careful of germs. I got sick with a viral cold and my onc said it was like the perfect storm yervoy and a virus. It was like x10. But since the cold is done my second infusion went well. I’ve really had no side effects except some days being a little tired. Also probiotics and goat milk soap for the skin. I think that really helped me out so far too. I got it from amazon. Good luck greg -
- February 5, 2016 at 2:36 am
Well I said be careful of germs. I got sick with a viral cold and my onc said it was like the perfect storm yervoy and a virus. It was like x10. But since the cold is done my second infusion went well. I’ve really had no side effects except some days being a little tired. Also probiotics and goat milk soap for the skin. I think that really helped me out so far too. I got it from amazon. Good luck greg
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- January 12, 2016 at 9:20 pm
Thanks for the post. Im currently taking ippi but I might have to have the second dose postponed by one week which my doctor said is not a big deal.( 10mg) I caught a virus from my daughter and tested positive for adeno virus that gave me fever for 7 days, sore throat, and terrible congestion. My next scheduled dose is the 18th. Do I think I can do it yes. But Im going to go on caution and wait one more week to get fully better since I can start to breathe out of my nose finally. Just a reminder to all people on ippi. You can get sick very easily. I recommend wearing a mask in public because this cold really ripped through me hard.
I was thinking about the dosages compared to 3mg and 10mg. If i did the 3mg dose my total medicine would be 1076mg. Since Im doing the 10mg dose it will be alot higher. My first dose alone was 910mg. That is almost the equivillant to all 3mg doses.
Cant wait to jump back into this yervoy medicine
Greg
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- February 2, 2016 at 12:18 am
I am new to the forum. I am very interested in your husband's experience. I have also been treated with 3mg/kg Ipi – 4 doses at 3 week intervals. I finished the last treatment 6 months ago. My tumours have shrunk – I guess I am NED but my doctor is too cautious to say it. I also had hypophystis but my anterior pituitary has shown no sign of recovery, so I am dependent on thyroxine and a cortisol replacement – currently prednisolone.
I was most interested in when you say it took over a year to stablisise your husband's hydrocortisone dose. In a way it helps, because I am really struggling with this. I felt very happy and healthy on 10 mg prednisolone but my endrocrine specialist wants me on between 5 and 7.5 mg, preferrably 5 mg.
One of the melanoma specialists I saw said the damage to my anterior pituitary is permanent. My endocrine specialist says there is a chance of recovery if I get my steroid dose down low enough. Unfortunately 'low enough' appears to mean I am barely able to function.
30 months. Wow! My melanomma specialist says if I make it to 3 years there is a good chance I will make it to 10. I have my fingers crossed for your husband.
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- February 2, 2016 at 12:18 am
I am new to the forum. I am very interested in your husband's experience. I have also been treated with 3mg/kg Ipi – 4 doses at 3 week intervals. I finished the last treatment 6 months ago. My tumours have shrunk – I guess I am NED but my doctor is too cautious to say it. I also had hypophystis but my anterior pituitary has shown no sign of recovery, so I am dependent on thyroxine and a cortisol replacement – currently prednisolone.
I was most interested in when you say it took over a year to stablisise your husband's hydrocortisone dose. In a way it helps, because I am really struggling with this. I felt very happy and healthy on 10 mg prednisolone but my endrocrine specialist wants me on between 5 and 7.5 mg, preferrably 5 mg.
One of the melanoma specialists I saw said the damage to my anterior pituitary is permanent. My endocrine specialist says there is a chance of recovery if I get my steroid dose down low enough. Unfortunately 'low enough' appears to mean I am barely able to function.
30 months. Wow! My melanomma specialist says if I make it to 3 years there is a good chance I will make it to 10. I have my fingers crossed for your husband.
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- February 2, 2016 at 12:18 am
I am new to the forum. I am very interested in your husband's experience. I have also been treated with 3mg/kg Ipi – 4 doses at 3 week intervals. I finished the last treatment 6 months ago. My tumours have shrunk – I guess I am NED but my doctor is too cautious to say it. I also had hypophystis but my anterior pituitary has shown no sign of recovery, so I am dependent on thyroxine and a cortisol replacement – currently prednisolone.
I was most interested in when you say it took over a year to stablisise your husband's hydrocortisone dose. In a way it helps, because I am really struggling with this. I felt very happy and healthy on 10 mg prednisolone but my endrocrine specialist wants me on between 5 and 7.5 mg, preferrably 5 mg.
One of the melanoma specialists I saw said the damage to my anterior pituitary is permanent. My endocrine specialist says there is a chance of recovery if I get my steroid dose down low enough. Unfortunately 'low enough' appears to mean I am barely able to function.
30 months. Wow! My melanomma specialist says if I make it to 3 years there is a good chance I will make it to 10. I have my fingers crossed for your husband.
Tagged: cutaneous melanoma, ocular melanoma
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