2nd Ipi dose 6/16 – side effects?

Praying for you TracyLee.

I have another spot on my scalp. Good chance my onc will send me to University of Colorado Cancer Center and I may be on ipi. Watching and learning from you.

Nicki, Stage 3b

Praying for you TracyLee.

I have another spot on my scalp. Good chance my onc will send me to University of Colorado Cancer Center and I may be on ipi. Watching and learning from you.

Nicki, Stage 3b

Dear TracyLee,

I have completed four infusions of ipi at 3mk/kg. I am going to cut and paste here what I have written about my Ipi experience……hope it helps…we are all individuals so we will REACT differently. Basically my side effects were minor and VERY manageable. I did not work while doing Ipi.

Here's my previous post:

I started Ipi on December 1, 2010, as part of a clinical trial (there was no other arm and I knew I was getting the Ipi). By December 2010 I had new melanoma tumors popping up almost daily, so during the first three treatments (ie over the first 9 weeks) I had many new spots totaling about 50 to 60 individual tumors, some the size of a pencil eraser, some smaller, all purplish or flesh color, some sub q's, some were "popped up" nodules. Some were clustered, especially around my knee and inside of my thigh/knee. The sub q's were painful to the touch and  were all on my thigh. It was scary as they were multiplying all over my leg, and three were closer to my groin, the closest to my groin yet. My melanoma oncologist saw my alarm but said that new tumors growing during the first 12 weeks of the trial, was "acceptable". While we didnt like it, we at least knew BMS wasnt going to kick me out of the trial. My oncologist took leg pictures every visit. Around the third treatment, 3mg/kg by the way, I noticed one small tumor on my knee had crusted over and then over the next several days to a week, it flaked off and grew smaller. I was pumped!! Then the rest of my tumors one by one started re-absorbing…thats the best word I can use. By treatment 4, I was seeing definite changes, many tumors were getting smaller. My oncologist looked at my skin with a black light the first visit….at my face and chest and neck…he believed he saw white patches on my skin or a "whitening"…vitiligo is what this is called…the same disease Michael Jackson had he told me. This is a sign that my body was reacting to the Ipi. I never could see the whitening myself.
Two weeks after my fourth treatment the clinical trial required a PET/CT scan, labs, doctor visit. My oncolgist came in to see me and say hello, but explained the melanoma oncology nurse practitioner who I have seen many times over the last 4.5 years was scheduled to see me that day. I said to him "You are going to want to come see my leg when I am undressed…ALL MY TUMORS ARE GONE!!!!!".He was so excited and left the room so I could change and then in 5 minutes he and the nurse practitioner came in and were checking me over and were both ecstatic as my mom and I were!!! My PET/CT showed inflammation in all my melanoma spots and also some uptake in the external iliac nodes, but he read the scans as negative but documenting that the melanoma was most likely reacting to the Ipi. To date I have had NO signs of return of any melanoma to my leg and I had scans, labs, and a doctors appointment 5/11…my PET/CT scan was totally clear for melanoma and no more inflammation showed up (except for where I have unhealed wounds). Just a note, for or a few more weeks after my 4th infusion, my skin remained purplish where each melanoma tumor was  but eventually that faded and i can not see any spot at all where any melanoma was. I am so excited. Leg amputation was a strong option my melanoma oncologist and melanoma oncology surgeon wanted me to consider before we decided to try Ipi.
As far as side effects——-I was more fatigued and had some nausea. The bouts of nausea were about once a week, and were intense…but I would take compazine and if it wasnt better in about 2 hours I would take Zofran. The nausea was intense enough that I could only sit or lie down, any other movement was difficult and I would have vomited. The oncology staff said out of the 15 they currently had in the Ipi trial with me, I was the only one who complained of nausea. I did resign my work in early December. I work as a licensed clinical social worker and my job involved traveling to three schools and seeing kids for therapy, doing crisis intervention, hospitalizing kids, doing emergency mental health work, etc. I did develop a slight all over body rash about two to four weeks after the fourth Ipi infusion, which DID NOT itch and which caused me no discomfort. It went away on its own. That's it for side effects. Very manageable!
So that is my Ipi story so far. I am sorry this is so long but I feel that my story gives you all a sense of what was going on and how Ipi affected me.

Good luck!

Vermont_Donna, stage 3a NED

Dear TracyLee,

I have completed four infusions of ipi at 3mk/kg. I am going to cut and paste here what I have written about my Ipi experience……hope it helps…we are all individuals so we will REACT differently. Basically my side effects were minor and VERY manageable. I did not work while doing Ipi.

Here's my previous post:

I started Ipi on December 1, 2010, as part of a clinical trial (there was no other arm and I knew I was getting the Ipi). By December 2010 I had new melanoma tumors popping up almost daily, so during the first three treatments (ie over the first 9 weeks) I had many new spots totaling about 50 to 60 individual tumors, some the size of a pencil eraser, some smaller, all purplish or flesh color, some sub q's, some were "popped up" nodules. Some were clustered, especially around my knee and inside of my thigh/knee. The sub q's were painful to the touch and  were all on my thigh. It was scary as they were multiplying all over my leg, and three were closer to my groin, the closest to my groin yet. My melanoma oncologist saw my alarm but said that new tumors growing during the first 12 weeks of the trial, was "acceptable". While we didnt like it, we at least knew BMS wasnt going to kick me out of the trial. My oncologist took leg pictures every visit. Around the third treatment, 3mg/kg by the way, I noticed one small tumor on my knee had crusted over and then over the next several days to a week, it flaked off and grew smaller. I was pumped!! Then the rest of my tumors one by one started re-absorbing…thats the best word I can use. By treatment 4, I was seeing definite changes, many tumors were getting smaller. My oncologist looked at my skin with a black light the first visit….at my face and chest and neck…he believed he saw white patches on my skin or a "whitening"…vitiligo is what this is called…the same disease Michael Jackson had he told me. This is a sign that my body was reacting to the Ipi. I never could see the whitening myself.
Two weeks after my fourth treatment the clinical trial required a PET/CT scan, labs, doctor visit. My oncolgist came in to see me and say hello, but explained the melanoma oncology nurse practitioner who I have seen many times over the last 4.5 years was scheduled to see me that day. I said to him "You are going to want to come see my leg when I am undressed…ALL MY TUMORS ARE GONE!!!!!".He was so excited and left the room so I could change and then in 5 minutes he and the nurse practitioner came in and were checking me over and were both ecstatic as my mom and I were!!! My PET/CT showed inflammation in all my melanoma spots and also some uptake in the external iliac nodes, but he read the scans as negative but documenting that the melanoma was most likely reacting to the Ipi. To date I have had NO signs of return of any melanoma to my leg and I had scans, labs, and a doctors appointment 5/11…my PET/CT scan was totally clear for melanoma and no more inflammation showed up (except for where I have unhealed wounds). Just a note, for or a few more weeks after my 4th infusion, my skin remained purplish where each melanoma tumor was  but eventually that faded and i can not see any spot at all where any melanoma was. I am so excited. Leg amputation was a strong option my melanoma oncologist and melanoma oncology surgeon wanted me to consider before we decided to try Ipi.
As far as side effects——-I was more fatigued and had some nausea. The bouts of nausea were about once a week, and were intense…but I would take compazine and if it wasnt better in about 2 hours I would take Zofran. The nausea was intense enough that I could only sit or lie down, any other movement was difficult and I would have vomited. The oncology staff said out of the 15 they currently had in the Ipi trial with me, I was the only one who complained of nausea. I did resign my work in early December. I work as a licensed clinical social worker and my job involved traveling to three schools and seeing kids for therapy, doing crisis intervention, hospitalizing kids, doing emergency mental health work, etc. I did develop a slight all over body rash about two to four weeks after the fourth Ipi infusion, which DID NOT itch and which caused me no discomfort. It went away on its own. That's it for side effects. Very manageable!
So that is my Ipi story so far. I am sorry this is so long but I feel that my story gives you all a sense of what was going on and how Ipi affected me.

Good luck!

Vermont_Donna, stage 3a NED