Ipi Symptoms?

I know almost nothing – I just had an appointment to start the process of getting on the compassionate use trial – but I did learn that vitiligo (which could be what's causing the white patches) can be a very good sign that he is responding.  (I know that doesn't help with his pain and itching…but it could be easier to put up with if there's hope of a good response.)  I wish him well!

KatyWI

I know almost nothing – I just had an appointment to start the process of getting on the compassionate use trial – but I did learn that vitiligo (which could be what's causing the white patches) can be a very good sign that he is responding.  (I know that doesn't help with his pain and itching…but it could be easier to put up with if there's hope of a good response.)  I wish him well!

KatyWI

Hi Mandy,

The resh and itching are common – I have them myself and they can be a nusiance.  Steroids are sometimes prescribed, but over the counter things can help, like Benadryl or Zyrtec pills, Sarna or Cortisone creams.  The white patches (vitiligo) are not uncommon either, and are actually one indicator that he may be responding – a good thing.  The pain you mention is not something I have experienced (I am an MDA patient as well).  He shoud definitely communicate get in touch by voicemail or email with either his Oncologist or Study Nurse about the pain if it persists for advice.  I can't tell you how long the rash and itching persist, but I hear it can go on for quite a while from those who have been receiving Ipi for long time (like around 2 years).- apparently as long as someone is receiving the treatment.  Hope that helps a little.

Best Wishes,

Jim

Hi Mandy,

The resh and itching are common – I have them myself and they can be a nusiance.  Steroids are sometimes prescribed, but over the counter things can help, like Benadryl or Zyrtec pills, Sarna or Cortisone creams.  The white patches (vitiligo) are not uncommon either, and are actually one indicator that he may be responding – a good thing.  The pain you mention is not something I have experienced (I am an MDA patient as well).  He shoud definitely communicate get in touch by voicemail or email with either his Oncologist or Study Nurse about the pain if it persists for advice.  I can't tell you how long the rash and itching persist, but I hear it can go on for quite a while from those who have been receiving Ipi for long time (like around 2 years).- apparently as long as someone is receiving the treatment.  Hope that helps a little.

Best Wishes,

Jim

Hi Mandy,

 I was on Ipi for 7 months. I mostly had mild side effects such as minimal rash that didn't itch, assorted minor aches and pains in the stomach, some hot flashes, minor headaches, minor fatigue. After the 3rd infusion I had severe chest pain which I went to the ER for. These side effects came and went. The major side effect I had began as 2 weeks of severe headaches. An MRI revealed hypophysitis or swelling of the pituitary gland. It was discovered 2 weeks before I was to get the 5th infusion. I was taken off Ipi and put on a steroid. The swelling abated and the pituitary gland regained it's normal size. After 2 years ( since Oct. 08) the pituitary hasn't regained function on it's own so I may be on this steroid a long time. I tried for the 3rd time to taper down and off it but only lasted 2 days. The severe headaches returned. Anyway this side effect has long term consequenses. It is one of the immune breakthrough events (like severe rash, colitis and others) that correlates with best outcomes (i.e. lower chance of recurrence)

 If your father experiences severe headaches urge the medical team to do an MRI. Hope this helps.

 God Bless,

 Jim M.

Hi Mandy,

 I was on Ipi for 7 months. I mostly had mild side effects such as minimal rash that didn't itch, assorted minor aches and pains in the stomach, some hot flashes, minor headaches, minor fatigue. After the 3rd infusion I had severe chest pain which I went to the ER for. These side effects came and went. The major side effect I had began as 2 weeks of severe headaches. An MRI revealed hypophysitis or swelling of the pituitary gland. It was discovered 2 weeks before I was to get the 5th infusion. I was taken off Ipi and put on a steroid. The swelling abated and the pituitary gland regained it's normal size. After 2 years ( since Oct. 08) the pituitary hasn't regained function on it's own so I may be on this steroid a long time. I tried for the 3rd time to taper down and off it but only lasted 2 days. The severe headaches returned. Anyway this side effect has long term consequenses. It is one of the immune breakthrough events (like severe rash, colitis and others) that correlates with best outcomes (i.e. lower chance of recurrence)

 If your father experiences severe headaches urge the medical team to do an MRI. Hope this helps.

 God Bless,

 Jim M.