meg

I am on the nivo alternating with ipi  with randomization to take one or the other first.

I got the PD1 Nivo first 12 wk then Ipi for the next 12 wk.  The tumors just enlarged for 5 mo. Then seemed to flatten quickly in the last 4 wk of the ipi.  I was really worried for a while.

I am on the nivo alternating with ipi  with randomization to take one or the other first.

I got the PD1 Nivo first 12 wk then Ipi for the next 12 wk.  The tumors just enlarged for 5 mo. Then seemed to flatten quickly in the last 4 wk of the ipi.  I was really worried for a while.

I am on the nivo alternating with ipi  with randomization to take one or the other first.

I got the PD1 Nivo first 12 wk then Ipi for the next 12 wk.  The tumors just enlarged for 5 mo. Then seemed to flatten quickly in the last 4 wk of the ipi.  I was really worried for a while.

I developed hypophisitis and adrenal insufficiency (AI) in the 11th week of 'ipi'.  It is on their insert that it is the median time ranging up to 19 wks for endocrinopathy.   The fatigue, no appetite, were the major symptoms, also diarrhea.  Easy to confuse with colitis, but I recognize now as associated with 'stressor' times, and I need hydrocortisone.  I have no thyroid problems whitch can accompany an inflammed pituitary, yet.

My endocrinologist has seen 50 cases of AI from ipi  (I am at Dana Farber in nivo-ipi trial) and he relayed that it was most likely permanent and is not one of the reversible toxicities. 

I had intense orientation to the disease and all the cautions (I'm an NP).  And I needed it.  The dose is in my control.  Hydrocortisione 15-30 mg/day  with the major dose or 10-20 mg in the am.  The rest in the afternoon, Never more that 30 mg. unless under fever rules (see previous post).  I may not feel stressed by activity but my body sure tells me my cortisol is low…fatigue, muscle aches, low appetite, both stomach and lower abdominal aches, finally diarrhea.  That is my 'ah ah' moment.  I have also noticed that stomach symptoms or aches may start at 3-4 pm if i'm late with the afternoon dose.

I was taking Tylenol for various aches and now realize it also may be due to AI.  Recently, my white blood count was noted as slowly drifting down over 2-3 mo. into the critical range.  They wanted a repeat in a week.  I related to the Clinical Trial team that it may be due to AI and I was now correlating various vague symptoms over the last 2 mo. to low cortisol and  maybe I needed to up the dose slightly over the next week. And the count came back to normal range.

Traveling, extra exercise, excitement of friends, any fast spontaneous fun can leave me fatigued that evening and struggling to get out of bed the next day. 

I've become more liberal with the hydrocortisone staying closer to 25 that the origianlly recommeded 15.

It is still considered a physiologic dose as opposed to treatment dose.

I recognize stress in lots areas and am still learning to read my body symptoms and adjust the dose for more fun in my life.

I developed hypophisitis and adrenal insufficiency (AI) in the 11th week of 'ipi'.  It is on their insert that it is the median time ranging up to 19 wks for endocrinopathy.   The fatigue, no appetite, were the major symptoms, also diarrhea.  Easy to confuse with colitis, but I recognize now as associated with 'stressor' times, and I need hydrocortisone.  I have no thyroid problems whitch can accompany an inflammed pituitary, yet.

My endocrinologist has seen 50 cases of AI from ipi  (I am at Dana Farber in nivo-ipi trial) and he relayed that it was most likely permanent and is not one of the reversible toxicities. 

I had intense orientation to the disease and all the cautions (I'm an NP).  And I needed it.  The dose is in my control.  Hydrocortisione 15-30 mg/day  with the major dose or 10-20 mg in the am.  The rest in the afternoon, Never more that 30 mg. unless under fever rules (see previous post).  I may not feel stressed by activity but my body sure tells me my cortisol is low…fatigue, muscle aches, low appetite, both stomach and lower abdominal aches, finally diarrhea.  That is my 'ah ah' moment.  I have also noticed that stomach symptoms or aches may start at 3-4 pm if i'm late with the afternoon dose.

I was taking Tylenol for various aches and now realize it also may be due to AI.  Recently, my white blood count was noted as slowly drifting down over 2-3 mo. into the critical range.  They wanted a repeat in a week.  I related to the Clinical Trial team that it may be due to AI and I was now correlating various vague symptoms over the last 2 mo. to low cortisol and  maybe I needed to up the dose slightly over the next week. And the count came back to normal range.

Traveling, extra exercise, excitement of friends, any fast spontaneous fun can leave me fatigued that evening and struggling to get out of bed the next day. 

I've become more liberal with the hydrocortisone staying closer to 25 that the origianlly recommeded 15.

It is still considered a physiologic dose as opposed to treatment dose.

I recognize stress in lots areas and am still learning to read my body symptoms and adjust the dose for more fun in my life.

I developed hypophisitis and adrenal insufficiency (AI) in the 11th week of 'ipi'.  It is on their insert that it is the median time ranging up to 19 wks for endocrinopathy.   The fatigue, no appetite, were the major symptoms, also diarrhea.  Easy to confuse with colitis, but I recognize now as associated with 'stressor' times, and I need hydrocortisone.  I have no thyroid problems whitch can accompany an inflammed pituitary, yet.

My endocrinologist has seen 50 cases of AI from ipi  (I am at Dana Farber in nivo-ipi trial) and he relayed that it was most likely permanent and is not one of the reversible toxicities. 

I had intense orientation to the disease and all the cautions (I'm an NP).  And I needed it.  The dose is in my control.  Hydrocortisione 15-30 mg/day  with the major dose or 10-20 mg in the am.  The rest in the afternoon, Never more that 30 mg. unless under fever rules (see previous post).  I may not feel stressed by activity but my body sure tells me my cortisol is low…fatigue, muscle aches, low appetite, both stomach and lower abdominal aches, finally diarrhea.  That is my 'ah ah' moment.  I have also noticed that stomach symptoms or aches may start at 3-4 pm if i'm late with the afternoon dose.

I was taking Tylenol for various aches and now realize it also may be due to AI.  Recently, my white blood count was noted as slowly drifting down over 2-3 mo. into the critical range.  They wanted a repeat in a week.  I related to the Clinical Trial team that it may be due to AI and I was now correlating various vague symptoms over the last 2 mo. to low cortisol and  maybe I needed to up the dose slightly over the next week. And the count came back to normal range.

Traveling, extra exercise, excitement of friends, any fast spontaneous fun can leave me fatigued that evening and struggling to get out of bed the next day. 

I've become more liberal with the hydrocortisone staying closer to 25 that the origianlly recommeded 15.

It is still considered a physiologic dose as opposed to treatment dose.

I recognize stress in lots areas and am still learning to read my body symptoms and adjust the dose for more fun in my life.