› Forums › General Melanoma Community › Common side effects for ipi?
- This topic has 10 replies, 5 voices, and was last updated 13 years ago by chenrydh.
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- May 16, 2011 at 11:38 am
My husband will be starting a trial tomorrow and he will either be taking just ipi or ipi and GM-CSF. Can someone let me know what kind of side effects are common to experience?
Also, I've been told it can take some time to work…I also read about the tumor sites becoming painful and warm. Does that happen regardless? Or does that only happen in the patients that the medicine is helping?
Sorry to be bombarding the board as of late, but I'd like to have as much information as possible going into the appointment tomorrow. Thank you!
My husband will be starting a trial tomorrow and he will either be taking just ipi or ipi and GM-CSF. Can someone let me know what kind of side effects are common to experience?
Also, I've been told it can take some time to work…I also read about the tumor sites becoming painful and warm. Does that happen regardless? Or does that only happen in the patients that the medicine is helping?
Sorry to be bombarding the board as of late, but I'd like to have as much information as possible going into the appointment tomorrow. Thank you!
Michelle, wife of Don, Stage IV
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- May 16, 2011 at 11:42 am
Hi Shelly,
I can't answer your question diectly but I know if you search this topic you will get lots of previous posts about ipi side effects and I am others will post new ones for you.
My husband will hopefully be starting ipi in 3 weeks as he was taken off his previous trial. It is very very hard to wait. I hope things go more smoothly for you.
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- May 16, 2011 at 11:42 am
Hi Shelly,
I can't answer your question diectly but I know if you search this topic you will get lots of previous posts about ipi side effects and I am others will post new ones for you.
My husband will hopefully be starting ipi in 3 weeks as he was taken off his previous trial. It is very very hard to wait. I hope things go more smoothly for you.
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- May 16, 2011 at 11:54 am
Hi Michelle,
I can't answer your question either, but I feel like I know you & Don from following you two on here so I just want to give you two my best. I'll be praying for him that this is effective.
Lord, in Your mercy, You're opening treatment doors for Don but there are two options on the table now. You know which is best for Don so please open the right door and firmly shut the wrong. Let this be effective and side effects few to none, but manageable if he has any. And keep Michelle calm through this and bring her peace. Walk with them and grant Don's medical team wisdom and communication. Thank You. Amen.
Grace and peace,
Carol
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- May 16, 2011 at 11:54 am
Hi Michelle,
I can't answer your question either, but I feel like I know you & Don from following you two on here so I just want to give you two my best. I'll be praying for him that this is effective.
Lord, in Your mercy, You're opening treatment doors for Don but there are two options on the table now. You know which is best for Don so please open the right door and firmly shut the wrong. Let this be effective and side effects few to none, but manageable if he has any. And keep Michelle calm through this and bring her peace. Walk with them and grant Don's medical team wisdom and communication. Thank You. Amen.
Grace and peace,
Carol
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- May 16, 2011 at 3:40 pm
Here's a link to a physician's blog about the side effects of ipi/Yervoy:
http://www.aimatmelanoma.org/aim-for-answers/physican-blog/1752.html
Best wishes.
Rich
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- May 16, 2011 at 3:40 pm
Here's a link to a physician's blog about the side effects of ipi/Yervoy:
http://www.aimatmelanoma.org/aim-for-answers/physican-blog/1752.html
Best wishes.
Rich
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- May 16, 2011 at 4:15 pm
Michelle,
If you haven't already, your husband will be given a Research Consent Form to sign to enter into the trial – it will be a lengthy document which will detail all known (at the time of signing) possible side effects. During the course of a trial – depending on its length, your husband may need to resign paper work which may note new side effects or possibly a reduction in the % of chance of a known side effect.
Remember – your paperwork will VERY LIKELY BE DIFFERENT due to the GMCSF component. Also, every patient respond differently and not everyone gets these symptoms…… but to give you only an idea, here's the info from the IPI Compassionate Use trial paperwork that I resigned in December 2010 – there may be newer versions since Yervoy is now FDA approved:
LIKELY (Chance of more than 50% that this will happen): Rash/Flusing; pain in your tumor sites; decrease in blood pressure; diarrhea, itchiness
FREQUENT (Chance of 10-50% that this will happen): pain or discomfort at the infusion site; bleeding from the infusion site; bruising at the nfusion site; swelling at the infusion site; autoimmune reaction suc as severe diarrhea and/or constipation, red, itchy rash on the skin, change in vision due to inflammation in the eye, fatigue (see immune based side effects listed below for further details); join pain; infetion; fainting; fatigue; rash; inflammation of the intestine; nausea; colitis
OCCASSIONAL (Chance of 1-10% that this will happen): abdominal pain; loss of appetite; headache; chills; fever; vomiting
RARE (approx chance of less than 1% that this will happen): autoimmune reaction that causes areas of decreased skin p9igmentation, called vitiligo; sufficiently bad intestinal inflammation that may require surgery to remove a portion of the inbtestine affected in autoimmune reaction; inflammation in the eye; pigment changes i nthe eye; dysfunction of endocrine glands which ay result in fatigue, confusion, weight loss, impotence (inability to perform sexually), and headache.; liver failure; kidney failure; inflammation of the kidneys which may be found on regular lab and urine testing; irregular heart beat (atrial fibrillation); muschle weakness or loss of muscle strength due to inflammation of the muscles; decrease in the number of a certain white blood cell which may put you at increased risk for infection; loss of feeling in your fingers and toes; swelling in areas of the body due to your immune cells clusterig; a condition in which fluid and proteins leadk out of tiny blood vessels and flow into surrounding tissues, resulting in dangerousl low blood pressure – This may lead to multiple organ failure and shock. Bleeding under the skin; cold sores; development of a second cancer that can be life threatening or fatal; inability to control your urine stream; imbalances in certain blood levels which can cause the kidneys to shut down, the heart to funtion irregularly, shorness of breath, and loss of consciousness; a temporary narrowng of the blood vessels in your hands which cuase a feeling of cold and numbness; a condition in which the heart nuscle becomes inflamed and does not pumb blood rhtough as it should (myocarditis); pneumonitis, inflammation of the lungs; bowel perforation; sever infections incuding sepsis; generalized mnuscle weakness wich acan also cause changes i n the eye and eyelid movements and difficulty breathing; fatal toxic necrolysis skin reaction; ataxia-lack of coordination of muscle; elevated levels of calcium in your blood or hypercalcemia; development of painful and tender nodules beneath the skin, ahing and swelling of the joints and a rash may occur t the same time – called Erythema Nodosum; elevated levels of an enzyme called CPK
IMMUNE BASED EVENTS CONSIDERED TO BE RELATED TO IP (NOTE several paragraphs are spelled out in the Research Consent Form that are not detailed for this posting on MPIPI: stomach/intestine; rash; eye issues; endocrine glands; liver; other organs, meningitis, nephritis, vitiligo
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- May 16, 2011 at 8:46 pm
Hi there. I'm currently doing IPI and also did the compassionate clinical trial. My side effects have been itching, rash and very tired. I've found out this time around (as I do my 3rd infusion on the 18th) there's more pain where tumors are located as well as swelling and soreness. I've been told that it does take sometimes a while to work as with my compassionate trial it did show some shrinkage in the tumors while yet others grew a little. I was very thankful when the FDA approved this drug. I was given lots of information from my doctor's on this treatment as I'm sure you will too. My prayers are with you and your husband.
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- May 16, 2011 at 8:46 pm
Hi there. I'm currently doing IPI and also did the compassionate clinical trial. My side effects have been itching, rash and very tired. I've found out this time around (as I do my 3rd infusion on the 18th) there's more pain where tumors are located as well as swelling and soreness. I've been told that it does take sometimes a while to work as with my compassionate trial it did show some shrinkage in the tumors while yet others grew a little. I was very thankful when the FDA approved this drug. I was given lots of information from my doctor's on this treatment as I'm sure you will too. My prayers are with you and your husband.
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- May 16, 2011 at 4:15 pm
Michelle,
If you haven't already, your husband will be given a Research Consent Form to sign to enter into the trial – it will be a lengthy document which will detail all known (at the time of signing) possible side effects. During the course of a trial – depending on its length, your husband may need to resign paper work which may note new side effects or possibly a reduction in the % of chance of a known side effect.
Remember – your paperwork will VERY LIKELY BE DIFFERENT due to the GMCSF component. Also, every patient respond differently and not everyone gets these symptoms…… but to give you only an idea, here's the info from the IPI Compassionate Use trial paperwork that I resigned in December 2010 – there may be newer versions since Yervoy is now FDA approved:
LIKELY (Chance of more than 50% that this will happen): Rash/Flusing; pain in your tumor sites; decrease in blood pressure; diarrhea, itchiness
FREQUENT (Chance of 10-50% that this will happen): pain or discomfort at the infusion site; bleeding from the infusion site; bruising at the nfusion site; swelling at the infusion site; autoimmune reaction suc as severe diarrhea and/or constipation, red, itchy rash on the skin, change in vision due to inflammation in the eye, fatigue (see immune based side effects listed below for further details); join pain; infetion; fainting; fatigue; rash; inflammation of the intestine; nausea; colitis
OCCASSIONAL (Chance of 1-10% that this will happen): abdominal pain; loss of appetite; headache; chills; fever; vomiting
RARE (approx chance of less than 1% that this will happen): autoimmune reaction that causes areas of decreased skin p9igmentation, called vitiligo; sufficiently bad intestinal inflammation that may require surgery to remove a portion of the inbtestine affected in autoimmune reaction; inflammation in the eye; pigment changes i nthe eye; dysfunction of endocrine glands which ay result in fatigue, confusion, weight loss, impotence (inability to perform sexually), and headache.; liver failure; kidney failure; inflammation of the kidneys which may be found on regular lab and urine testing; irregular heart beat (atrial fibrillation); muschle weakness or loss of muscle strength due to inflammation of the muscles; decrease in the number of a certain white blood cell which may put you at increased risk for infection; loss of feeling in your fingers and toes; swelling in areas of the body due to your immune cells clusterig; a condition in which fluid and proteins leadk out of tiny blood vessels and flow into surrounding tissues, resulting in dangerousl low blood pressure – This may lead to multiple organ failure and shock. Bleeding under the skin; cold sores; development of a second cancer that can be life threatening or fatal; inability to control your urine stream; imbalances in certain blood levels which can cause the kidneys to shut down, the heart to funtion irregularly, shorness of breath, and loss of consciousness; a temporary narrowng of the blood vessels in your hands which cuase a feeling of cold and numbness; a condition in which the heart nuscle becomes inflamed and does not pumb blood rhtough as it should (myocarditis); pneumonitis, inflammation of the lungs; bowel perforation; sever infections incuding sepsis; generalized mnuscle weakness wich acan also cause changes i n the eye and eyelid movements and difficulty breathing; fatal toxic necrolysis skin reaction; ataxia-lack of coordination of muscle; elevated levels of calcium in your blood or hypercalcemia; development of painful and tender nodules beneath the skin, ahing and swelling of the joints and a rash may occur t the same time – called Erythema Nodosum; elevated levels of an enzyme called CPK
IMMUNE BASED EVENTS CONSIDERED TO BE RELATED TO IP (NOTE several paragraphs are spelled out in the Research Consent Form that are not detailed for this posting on MPIPI: stomach/intestine; rash; eye issues; endocrine glands; liver; other organs, meningitis, nephritis, vitiligo
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