› Forums › General Melanoma Community › Start Ippi Monday
- This topic has 24 replies, 7 voices, and was last updated 11 years, 11 months ago by
Tina D.
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- January 11, 2013 at 7:26 pm
I start Ippi as part of the clinical trial for it verses interferon. I will be receiving the 3 mg/kg dose. I'm hoping all goes well. Is there anything I should be aware of before I start and/or during treatment. I'm alittle nervous about starting but if it keeps me NED longer then I'm all for it.
I start Ippi as part of the clinical trial for it verses interferon. I will be receiving the 3 mg/kg dose. I'm hoping all goes well. Is there anything I should be aware of before I start and/or during treatment. I'm alittle nervous about starting but if it keeps me NED longer then I'm all for it.
- Replies
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- January 11, 2013 at 8:39 pm
Hi Joe,
The only advice I have is to read the paperwork they give you and call your doctor if you experience any side-effects. If you get any, they might be mild, as they are for many. But just in case, don’t try to be a tough guy. Since you’re in a trial, your team has been well-trained and I’m sure you’ll be just fine.
Keep us posted.
All the best,
Karen -
- January 11, 2013 at 8:39 pm
Hi Joe,
The only advice I have is to read the paperwork they give you and call your doctor if you experience any side-effects. If you get any, they might be mild, as they are for many. But just in case, don’t try to be a tough guy. Since you’re in a trial, your team has been well-trained and I’m sure you’ll be just fine.
Keep us posted.
All the best,
Karen-
- January 11, 2013 at 9:31 pm
My brother started ipi this week, too, so I've had many of the same questions. Like all chemo, everybody has different side effects with different severity. It can take weeks or months to develop autoimmune reactions to ipi, so the patient, the caregivers, and the medical team all need to remain observant during and after the treatment.
My brother's oncology pharmacist emphasized that gastrointestinal problems, especially, can escalate quickly (2-3 days) if not noticed and treated promptly. Then she said that not very many physicans, including ER physicians, know what Yervoy is or what it does or how to treat the side effects (so reassuring!). So keep the product literature with you at all times. I also found this chemo nurse's article very hlepful. "Special Report on Immunotherapy: Managing Yervoy's Side Effects" http://www.onclive.com/publications/oncology-nurse/2012/february-2012/Special-Report-on-Immunotherapy-Managing-Yervoys-Side-Effects
Dont' be alarmed, just be educated and vigilant.
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- January 13, 2013 at 2:18 am
It’s true, gastro problems can begin rather quickly–so can a rash. USUALLY, full-blown, serious side effects, if they hsppen at all, tend to happen after the 2nd or 3rd dose. In my case, it was 3rd. I was in touch with my onc’s office every single day. But keep in mind that this happens to the minority, not the majority. And the opinion has changed as to side-effects = response. It ain’t necessarily so.
Enjoy your life, but remain vigilent. Report any bowel or other irregularities to your onc. -
- January 13, 2013 at 2:18 am
It’s true, gastro problems can begin rather quickly–so can a rash. USUALLY, full-blown, serious side effects, if they hsppen at all, tend to happen after the 2nd or 3rd dose. In my case, it was 3rd. I was in touch with my onc’s office every single day. But keep in mind that this happens to the minority, not the majority. And the opinion has changed as to side-effects = response. It ain’t necessarily so.
Enjoy your life, but remain vigilent. Report any bowel or other irregularities to your onc. -
- January 13, 2013 at 2:18 am
It’s true, gastro problems can begin rather quickly–so can a rash. USUALLY, full-blown, serious side effects, if they hsppen at all, tend to happen after the 2nd or 3rd dose. In my case, it was 3rd. I was in touch with my onc’s office every single day. But keep in mind that this happens to the minority, not the majority. And the opinion has changed as to side-effects = response. It ain’t necessarily so.
Enjoy your life, but remain vigilent. Report any bowel or other irregularities to your onc. -
- January 11, 2013 at 9:31 pm
My brother started ipi this week, too, so I've had many of the same questions. Like all chemo, everybody has different side effects with different severity. It can take weeks or months to develop autoimmune reactions to ipi, so the patient, the caregivers, and the medical team all need to remain observant during and after the treatment.
My brother's oncology pharmacist emphasized that gastrointestinal problems, especially, can escalate quickly (2-3 days) if not noticed and treated promptly. Then she said that not very many physicans, including ER physicians, know what Yervoy is or what it does or how to treat the side effects (so reassuring!). So keep the product literature with you at all times. I also found this chemo nurse's article very hlepful. "Special Report on Immunotherapy: Managing Yervoy's Side Effects" http://www.onclive.com/publications/oncology-nurse/2012/february-2012/Special-Report-on-Immunotherapy-Managing-Yervoys-Side-Effects
Dont' be alarmed, just be educated and vigilant.
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- January 11, 2013 at 9:31 pm
My brother started ipi this week, too, so I've had many of the same questions. Like all chemo, everybody has different side effects with different severity. It can take weeks or months to develop autoimmune reactions to ipi, so the patient, the caregivers, and the medical team all need to remain observant during and after the treatment.
My brother's oncology pharmacist emphasized that gastrointestinal problems, especially, can escalate quickly (2-3 days) if not noticed and treated promptly. Then she said that not very many physicans, including ER physicians, know what Yervoy is or what it does or how to treat the side effects (so reassuring!). So keep the product literature with you at all times. I also found this chemo nurse's article very hlepful. "Special Report on Immunotherapy: Managing Yervoy's Side Effects" http://www.onclive.com/publications/oncology-nurse/2012/february-2012/Special-Report-on-Immunotherapy-Managing-Yervoys-Side-Effects
Dont' be alarmed, just be educated and vigilant.
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- January 11, 2013 at 8:39 pm
Hi Joe,
The only advice I have is to read the paperwork they give you and call your doctor if you experience any side-effects. If you get any, they might be mild, as they are for many. But just in case, don’t try to be a tough guy. Since you’re in a trial, your team has been well-trained and I’m sure you’ll be just fine.
Keep us posted.
All the best,
Karen -
- January 11, 2013 at 10:16 pm
Joe,
In 3 weeks i am going to stop Zelboraf and start IPPI. At first i was very apprehensive about starting it since theZ was working but my doctor explained why we are doing this and i feel this is the right approach. I have read many emails and other info. about the IPPI and the side effects and i feel comfortable with our decision. I pray you have great results from it and the side effects are minimal. The main thing to remember is to contact your contact as soon as a side effect happens so they can prescribe the correct treatment.
Good Luck!!
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- January 14, 2013 at 6:37 am
Curious bigb,
This treatment approach makes sense. Can you email me with your dr’s reasoning. I’m going to San Fran this Friday to see Dr. Minor a melanoma specialist to discuss z dosage, ipi options, etc. Since combining isn’t fda approved but shows promise in trials I wanted to explore this approach.
My email is [email protected]
Thanks so much
Sorry to the poster, I have no ipi experience to help you.
All my best to you,
Denise -
- January 14, 2013 at 6:37 am
Curious bigb,
This treatment approach makes sense. Can you email me with your dr’s reasoning. I’m going to San Fran this Friday to see Dr. Minor a melanoma specialist to discuss z dosage, ipi options, etc. Since combining isn’t fda approved but shows promise in trials I wanted to explore this approach.
My email is [email protected]
Thanks so much
Sorry to the poster, I have no ipi experience to help you.
All my best to you,
Denise -
- January 14, 2013 at 6:37 am
Curious bigb,
This treatment approach makes sense. Can you email me with your dr’s reasoning. I’m going to San Fran this Friday to see Dr. Minor a melanoma specialist to discuss z dosage, ipi options, etc. Since combining isn’t fda approved but shows promise in trials I wanted to explore this approach.
My email is [email protected]
Thanks so much
Sorry to the poster, I have no ipi experience to help you.
All my best to you,
Denise
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- January 11, 2013 at 10:16 pm
Joe,
In 3 weeks i am going to stop Zelboraf and start IPPI. At first i was very apprehensive about starting it since theZ was working but my doctor explained why we are doing this and i feel this is the right approach. I have read many emails and other info. about the IPPI and the side effects and i feel comfortable with our decision. I pray you have great results from it and the side effects are minimal. The main thing to remember is to contact your contact as soon as a side effect happens so they can prescribe the correct treatment.
Good Luck!!
-
- January 11, 2013 at 10:16 pm
Joe,
In 3 weeks i am going to stop Zelboraf and start IPPI. At first i was very apprehensive about starting it since theZ was working but my doctor explained why we are doing this and i feel this is the right approach. I have read many emails and other info. about the IPPI and the side effects and i feel comfortable with our decision. I pray you have great results from it and the side effects are minimal. The main thing to remember is to contact your contact as soon as a side effect happens so they can prescribe the correct treatment.
Good Luck!!
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- January 14, 2013 at 3:47 pm
I'm in the trial and had my 4th dose 10 days ago. I was just saying in another post I've had about zero side effects. Sometimes I've felt like I had fatigue, but it's hard to say that it was because of the ipi. Be glad you're not on the high dose, there have been a lot of complications with that one. Most of the side effects seem to be pretty minimal, if at all, with the low dose, but like I think someone else said, let your doctor know ASAP about anything that comes up! Mine gave me an after hours number to call, so ask your doctor about that just in case.
I was really nervous too, but nothing has really changed since I started – I ran 2 half marathons during the first 3 treatments! Best of luck to you! If I can help with anything else or if you have other questions, please feel free to ask or email me at [email protected] – I know I had TONS of questions, and of course everyone's experience will be different, but it was helpful to me to learn about other's experience with it.
Melissa
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- January 14, 2013 at 3:47 pm
I'm in the trial and had my 4th dose 10 days ago. I was just saying in another post I've had about zero side effects. Sometimes I've felt like I had fatigue, but it's hard to say that it was because of the ipi. Be glad you're not on the high dose, there have been a lot of complications with that one. Most of the side effects seem to be pretty minimal, if at all, with the low dose, but like I think someone else said, let your doctor know ASAP about anything that comes up! Mine gave me an after hours number to call, so ask your doctor about that just in case.
I was really nervous too, but nothing has really changed since I started – I ran 2 half marathons during the first 3 treatments! Best of luck to you! If I can help with anything else or if you have other questions, please feel free to ask or email me at [email protected] – I know I had TONS of questions, and of course everyone's experience will be different, but it was helpful to me to learn about other's experience with it.
Melissa
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- January 14, 2013 at 3:47 pm
I'm in the trial and had my 4th dose 10 days ago. I was just saying in another post I've had about zero side effects. Sometimes I've felt like I had fatigue, but it's hard to say that it was because of the ipi. Be glad you're not on the high dose, there have been a lot of complications with that one. Most of the side effects seem to be pretty minimal, if at all, with the low dose, but like I think someone else said, let your doctor know ASAP about anything that comes up! Mine gave me an after hours number to call, so ask your doctor about that just in case.
I was really nervous too, but nothing has really changed since I started – I ran 2 half marathons during the first 3 treatments! Best of luck to you! If I can help with anything else or if you have other questions, please feel free to ask or email me at [email protected] – I know I had TONS of questions, and of course everyone's experience will be different, but it was helpful to me to learn about other's experience with it.
Melissa
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- January 15, 2013 at 3:38 am
Thanks for all the replies and info I had the first dose today and I was extremely nervous but so far so good. It was definetly alittle diffrent then what i excpected from what ive seen in the movies lol. the doc and nurse said if I see symptoms it is usually around the 3rd and 4th doses. But they did say of course to call immediately if I have any symptoms. -
- January 15, 2013 at 3:38 am
Thanks for all the replies and info I had the first dose today and I was extremely nervous but so far so good. It was definetly alittle diffrent then what i excpected from what ive seen in the movies lol. the doc and nurse said if I see symptoms it is usually around the 3rd and 4th doses. But they did say of course to call immediately if I have any symptoms. -
- January 15, 2013 at 3:38 am
Thanks for all the replies and info I had the first dose today and I was extremely nervous but so far so good. It was definetly alittle diffrent then what i excpected from what ive seen in the movies lol. the doc and nurse said if I see symptoms it is usually around the 3rd and 4th doses. But they did say of course to call immediately if I have any symptoms. -
- January 18, 2013 at 4:40 pm
I just had my 2nd dose on the 9th. So far, no side effects except for possibly fatigue ( but it is hard to tell because I am also recovering from surgery on the 4th). Things they emphasized to me were: Do not take any vaccines, report any symptoms promptly ( including any diarrhea at the onset). So far, so good for me. Wishing you all the best and a great response!!
Tina
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- January 18, 2013 at 4:40 pm
I just had my 2nd dose on the 9th. So far, no side effects except for possibly fatigue ( but it is hard to tell because I am also recovering from surgery on the 4th). Things they emphasized to me were: Do not take any vaccines, report any symptoms promptly ( including any diarrhea at the onset). So far, so good for me. Wishing you all the best and a great response!!
Tina
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- January 18, 2013 at 4:40 pm
I just had my 2nd dose on the 9th. So far, no side effects except for possibly fatigue ( but it is hard to tell because I am also recovering from surgery on the 4th). Things they emphasized to me were: Do not take any vaccines, report any symptoms promptly ( including any diarrhea at the onset). So far, so good for me. Wishing you all the best and a great response!!
Tina
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