sayres

How long have you been on ipi? It takes a while to build up in your system as well.

How long have you been on ipi? It takes a while to build up in your system as well.

How long have you been on ipi? It takes a while to build up in your system as well.

I am on the combo as well. 41 years old. Never had any health problems before cancer. Very athletic and in shape. My joints hurt terribly from the meds. My lower back, wrists, ankles, bottoms of my feet. Everywhere. I already had dilaudid 2mg for liver pain so my doctor has me take that as needed for the joint pain. Also an anti-inflammatory indomethacin 50mg 3x daily. Sometimes I will go days without taking any dilaudid and then some days I need it more.

My oncologist doesn’t believe in suffering either…whenever I have an issue I’ve been instructed to call right away. I didn’t want to take anything at first for pain, I kept believing i could do it on my own. You don’t receive any trophies for being the toughest with this disease…only he can determine what he wants to do but he would be much more comfortable looking for some sort of relief with anti-inflammatories at the least.

Good luck and update when you can.

I am on the combo as well. 41 years old. Never had any health problems before cancer. Very athletic and in shape. My joints hurt terribly from the meds. My lower back, wrists, ankles, bottoms of my feet. Everywhere. I already had dilaudid 2mg for liver pain so my doctor has me take that as needed for the joint pain. Also an anti-inflammatory indomethacin 50mg 3x daily. Sometimes I will go days without taking any dilaudid and then some days I need it more.

My oncologist doesn’t believe in suffering either…whenever I have an issue I’ve been instructed to call right away. I didn’t want to take anything at first for pain, I kept believing i could do it on my own. You don’t receive any trophies for being the toughest with this disease…only he can determine what he wants to do but he would be much more comfortable looking for some sort of relief with anti-inflammatories at the least.

Good luck and update when you can.

I am on the combo as well. 41 years old. Never had any health problems before cancer. Very athletic and in shape. My joints hurt terribly from the meds. My lower back, wrists, ankles, bottoms of my feet. Everywhere. I already had dilaudid 2mg for liver pain so my doctor has me take that as needed for the joint pain. Also an anti-inflammatory indomethacin 50mg 3x daily. Sometimes I will go days without taking any dilaudid and then some days I need it more.

My oncologist doesn’t believe in suffering either…whenever I have an issue I’ve been instructed to call right away. I didn’t want to take anything at first for pain, I kept believing i could do it on my own. You don’t receive any trophies for being the toughest with this disease…only he can determine what he wants to do but he would be much more comfortable looking for some sort of relief with anti-inflammatories at the least.

Good luck and update when you can.

Best news I've heard in a while….best present ever! 

Best news I've heard in a while….best present ever! 

Best news I've heard in a while….best present ever! 

I was on immunotherapy (nivo/ippi) for 3 treatments with no change in my mets (liver, lungs, lymph nodes), suffered major side effects so stopped treatment. I started on taf/mek combo at Thanksgiving. Stopped on Christmas eve due to severe side effects. Started back on tafinlar 2 weeks ago and I seem to be tolerating that with minimal side effects. Going to reintroduce the Mek again Jan 28th at half dose and see if I can tolerate. I haven’t had a scan since starting the combo at Thanksgiving but oncologist says that he can feel my liver is back under my ribcage which means the drugs are working. Apparently my liver was very distended to start with and was easily felt by my oncologist when he examined me and now he can hardly feel it. Thus, a remarkable improvement according to him. He stated that he has had patients on this drug combo for up to 4 years. I also asked him if immunotherapy repeat was in my future and he said it wasn’t out of the picture and that there were many options still out there.

I was on immunotherapy (nivo/ippi) for 3 treatments with no change in my mets (liver, lungs, lymph nodes), suffered major side effects so stopped treatment. I started on taf/mek combo at Thanksgiving. Stopped on Christmas eve due to severe side effects. Started back on tafinlar 2 weeks ago and I seem to be tolerating that with minimal side effects. Going to reintroduce the Mek again Jan 28th at half dose and see if I can tolerate. I haven’t had a scan since starting the combo at Thanksgiving but oncologist says that he can feel my liver is back under my ribcage which means the drugs are working. Apparently my liver was very distended to start with and was easily felt by my oncologist when he examined me and now he can hardly feel it. Thus, a remarkable improvement according to him. He stated that he has had patients on this drug combo for up to 4 years. I also asked him if immunotherapy repeat was in my future and he said it wasn’t out of the picture and that there were many options still out there.

I was on immunotherapy (nivo/ippi) for 3 treatments with no change in my mets (liver, lungs, lymph nodes), suffered major side effects so stopped treatment. I started on taf/mek combo at Thanksgiving. Stopped on Christmas eve due to severe side effects. Started back on tafinlar 2 weeks ago and I seem to be tolerating that with minimal side effects. Going to reintroduce the Mek again Jan 28th at half dose and see if I can tolerate. I haven’t had a scan since starting the combo at Thanksgiving but oncologist says that he can feel my liver is back under my ribcage which means the drugs are working. Apparently my liver was very distended to start with and was easily felt by my oncologist when he examined me and now he can hardly feel it. Thus, a remarkable improvement according to him. He stated that he has had patients on this drug combo for up to 4 years. I also asked him if immunotherapy repeat was in my future and he said it wasn’t out of the picture and that there were many options still out there.

Mine was very itchy as well. Back of my left knee and a wide excision. Even after the sutures came out and months later I still itched. It’s a long healing process. Depending on depth I also have a tingling sensation and it’s been almost 2 years.

Mine was very itchy as well. Back of my left knee and a wide excision. Even after the sutures came out and months later I still itched. It’s a long healing process. Depending on depth I also have a tingling sensation and it’s been almost 2 years.

Mine was very itchy as well. Back of my left knee and a wide excision. Even after the sutures came out and months later I still itched. It’s a long healing process. Depending on depth I also have a tingling sensation and it’s been almost 2 years.