katie1

My husband developed ringing in his ears when his hormones (likely Cortisol) dropped from ipi induced hypophysitis. If your hormone levels haven't been checked recently that might be something else to check 

Best

Kate

My husband developed ringing in his ears when his hormones (likely Cortisol) dropped from ipi induced hypophysitis. If your hormone levels haven't been checked recently that might be something else to check 

Best

Kate

My husband developed ringing in his ears when his hormones (likely Cortisol) dropped from ipi induced hypophysitis. If your hormone levels haven't been checked recently that might be something else to check 

Best

Kate

Hi Maranne,

great news. 

Kate

Hi Maranne,

great news. 

Kate

Hi Maranne,

great news. 

Kate

Hi David,

I'm sorry to hear about your diagnosis.  Stage IIC can be scary since you are at a high risk for recurrence (highter than stage IIIA, I believe) with limited adjuvant options.  Was your tumor tested for Braf? If you are Braf positive, Ottawa is listed as still recruiting for the Brim8 Vemurafenib adjuvant trial.   I'm not necessarily recommending that trial,  just pointing out it might be an option to consider if you are Braf positive (and knowing your Braf status could be potentially helpful down the road)

The good news is that there are now many effective options for treatment if you happen to have a recurrence. When my husband (IIIC  T4bn2cM0) was diagnosed that wasn't quite the case.  He participated in the adjuvant Ipi vs Interferon trial.  He was in an Ipi arm of the trial, but when considering if he would do the Interferon since there was only a recurrence free survival benefit, he said he would have considered it because there were things (Nivo/Pembro) in trials with anticipation of approval down the line. They have now been approved (both in the US and Canada)

Keep educating yourself

Best,

Kate

Hi David,

I'm sorry to hear about your diagnosis.  Stage IIC can be scary since you are at a high risk for recurrence (highter than stage IIIA, I believe) with limited adjuvant options.  Was your tumor tested for Braf? If you are Braf positive, Ottawa is listed as still recruiting for the Brim8 Vemurafenib adjuvant trial.   I'm not necessarily recommending that trial,  just pointing out it might be an option to consider if you are Braf positive (and knowing your Braf status could be potentially helpful down the road)

The good news is that there are now many effective options for treatment if you happen to have a recurrence. When my husband (IIIC  T4bn2cM0) was diagnosed that wasn't quite the case.  He participated in the adjuvant Ipi vs Interferon trial.  He was in an Ipi arm of the trial, but when considering if he would do the Interferon since there was only a recurrence free survival benefit, he said he would have considered it because there were things (Nivo/Pembro) in trials with anticipation of approval down the line. They have now been approved (both in the US and Canada)

Keep educating yourself

Best,

Kate

Hi David,

I'm sorry to hear about your diagnosis.  Stage IIC can be scary since you are at a high risk for recurrence (highter than stage IIIA, I believe) with limited adjuvant options.  Was your tumor tested for Braf? If you are Braf positive, Ottawa is listed as still recruiting for the Brim8 Vemurafenib adjuvant trial.   I'm not necessarily recommending that trial,  just pointing out it might be an option to consider if you are Braf positive (and knowing your Braf status could be potentially helpful down the road)

The good news is that there are now many effective options for treatment if you happen to have a recurrence. When my husband (IIIC  T4bn2cM0) was diagnosed that wasn't quite the case.  He participated in the adjuvant Ipi vs Interferon trial.  He was in an Ipi arm of the trial, but when considering if he would do the Interferon since there was only a recurrence free survival benefit, he said he would have considered it because there were things (Nivo/Pembro) in trials with anticipation of approval down the line. They have now been approved (both in the US and Canada)

Keep educating yourself

Best,

Kate

My husband IIIC (12mm, ulcerated amelanotic nodular) participated in the adjuvant Ipi vs Interferon trial.  He was in the 3mg/kg arm.  He was able to receive the 4 induction doses but did not recieve any of the maintenance doses due to developing hypohysitis.  If you read through this site and Celeste's blog you will find info on side effects and their treatment.  Under the supervision of experienced doctors, the side effects can be managed.  Though endocrinopathies can result in permanent side effects requiring long term hormone replacement, most of the side effects are reversible.  My husband remains NED 29 months after his first infusion of IPI

Wishing you the Best,

Kate

My husband IIIC (12mm, ulcerated amelanotic nodular) participated in the adjuvant Ipi vs Interferon trial.  He was in the 3mg/kg arm.  He was able to receive the 4 induction doses but did not recieve any of the maintenance doses due to developing hypohysitis.  If you read through this site and Celeste's blog you will find info on side effects and their treatment.  Under the supervision of experienced doctors, the side effects can be managed.  Though endocrinopathies can result in permanent side effects requiring long term hormone replacement, most of the side effects are reversible.  My husband remains NED 29 months after his first infusion of IPI

Wishing you the Best,

Kate

My husband IIIC (12mm, ulcerated amelanotic nodular) participated in the adjuvant Ipi vs Interferon trial.  He was in the 3mg/kg arm.  He was able to receive the 4 induction doses but did not recieve any of the maintenance doses due to developing hypohysitis.  If you read through this site and Celeste's blog you will find info on side effects and their treatment.  Under the supervision of experienced doctors, the side effects can be managed.  Though endocrinopathies can result in permanent side effects requiring long term hormone replacement, most of the side effects are reversible.  My husband remains NED 29 months after his first infusion of IPI

Wishing you the Best,

Kate

HI

My husband is a participant in the Ipi vs Interferon Adjuvant trial.  In this trial there are two Ipi doses (3mg/kg and 10mg/kg)–ECOG 1609.  My husband (Stage IIIC-T4bN2cM0) is in the 3mg/kg arm.  He began the trial in the early Summer of 2013.  He had to stop infusions after 4 doses due to Grade 3/4 side effects.  This trial includes 4 maintenance doses every 3 months following the initial 4 induction infusions (every 3 weeks).  My husband had lots of side effects which were Grade 1 or 2 (itching, rashes, ocular, minor diarrhea etc).  He developed hypophysitis following his 4th infusion.  It's a long and complicated story but he is now steroid dependent but stable. He worked throughout the treatments (except when he was hospitalized for an adrenal crisis)

Something to note from the trial Celeste posted:  52% of patients in that trial had to stop the infusions due to side effects.  Celeste has great info on her blog.

Our trial doctor and coordinator are saying they are seeing higher rates of side effects in the adjuvant population.  No patient at my husband's site has been able to finish all the doses (trial criteria is very strict on when the infusions must be stopped).  There have been 8 deaths in the ECOG 1609 trial (all in the 10 mg/kg arm).  The 10mg arm was suspended for a period of time due to these deaths but it was re-opened following review of the data (the assumption being the data was positive enough to re-open)  There have been a  higher incidence  (according to the routine updates my husband must sign) of endocrinopathies -and other side effects in both the 3mg/kg and 10mg/kg arms of the trial.

I'm not trying to discourage you in the least.  My husband is so very thankful he had the opportunity to participate in this trial—though glad he was in the 3mg/kg arm given his side effects. Just know that in the adjuvant setting the ratties that have gone before have shown a higher incidence of all side effects (especially endocrinopathies) vs in the metastatic setting.

My husband remains NED 29 months after his first infusion of Ipi

Best,

Kate

HI

My husband is a participant in the Ipi vs Interferon Adjuvant trial.  In this trial there are two Ipi doses (3mg/kg and 10mg/kg)–ECOG 1609.  My husband (Stage IIIC-T4bN2cM0) is in the 3mg/kg arm.  He began the trial in the early Summer of 2013.  He had to stop infusions after 4 doses due to Grade 3/4 side effects.  This trial includes 4 maintenance doses every 3 months following the initial 4 induction infusions (every 3 weeks).  My husband had lots of side effects which were Grade 1 or 2 (itching, rashes, ocular, minor diarrhea etc).  He developed hypophysitis following his 4th infusion.  It's a long and complicated story but he is now steroid dependent but stable. He worked throughout the treatments (except when he was hospitalized for an adrenal crisis)

Something to note from the trial Celeste posted:  52% of patients in that trial had to stop the infusions due to side effects.  Celeste has great info on her blog.

Our trial doctor and coordinator are saying they are seeing higher rates of side effects in the adjuvant population.  No patient at my husband's site has been able to finish all the doses (trial criteria is very strict on when the infusions must be stopped).  There have been 8 deaths in the ECOG 1609 trial (all in the 10 mg/kg arm).  The 10mg arm was suspended for a period of time due to these deaths but it was re-opened following review of the data (the assumption being the data was positive enough to re-open)  There have been a  higher incidence  (according to the routine updates my husband must sign) of endocrinopathies -and other side effects in both the 3mg/kg and 10mg/kg arms of the trial.

I'm not trying to discourage you in the least.  My husband is so very thankful he had the opportunity to participate in this trial—though glad he was in the 3mg/kg arm given his side effects. Just know that in the adjuvant setting the ratties that have gone before have shown a higher incidence of all side effects (especially endocrinopathies) vs in the metastatic setting.

My husband remains NED 29 months after his first infusion of Ipi

Best,

Kate

HI

My husband is a participant in the Ipi vs Interferon Adjuvant trial.  In this trial there are two Ipi doses (3mg/kg and 10mg/kg)–ECOG 1609.  My husband (Stage IIIC-T4bN2cM0) is in the 3mg/kg arm.  He began the trial in the early Summer of 2013.  He had to stop infusions after 4 doses due to Grade 3/4 side effects.  This trial includes 4 maintenance doses every 3 months following the initial 4 induction infusions (every 3 weeks).  My husband had lots of side effects which were Grade 1 or 2 (itching, rashes, ocular, minor diarrhea etc).  He developed hypophysitis following his 4th infusion.  It's a long and complicated story but he is now steroid dependent but stable. He worked throughout the treatments (except when he was hospitalized for an adrenal crisis)

Something to note from the trial Celeste posted:  52% of patients in that trial had to stop the infusions due to side effects.  Celeste has great info on her blog.

Our trial doctor and coordinator are saying they are seeing higher rates of side effects in the adjuvant population.  No patient at my husband's site has been able to finish all the doses (trial criteria is very strict on when the infusions must be stopped).  There have been 8 deaths in the ECOG 1609 trial (all in the 10 mg/kg arm).  The 10mg arm was suspended for a period of time due to these deaths but it was re-opened following review of the data (the assumption being the data was positive enough to re-open)  There have been a  higher incidence  (according to the routine updates my husband must sign) of endocrinopathies -and other side effects in both the 3mg/kg and 10mg/kg arms of the trial.

I'm not trying to discourage you in the least.  My husband is so very thankful he had the opportunity to participate in this trial—though glad he was in the 3mg/kg arm given his side effects. Just know that in the adjuvant setting the ratties that have gone before have shown a higher incidence of all side effects (especially endocrinopathies) vs in the metastatic setting.

My husband remains NED 29 months after his first infusion of Ipi

Best,

Kate