Elana

I have the mirena IUD so I only get my period about every 50 days. I do notice thought that I got ovulation pains, when I was on Ippi and I never had those before. Had to leave a yoga class once and just laid on the locker room floor for 30 minutes because it hurt so much. However, it could be unrelated to ipi and more related to the stress we are experiencing, diet and physical activity changes. who knows, but best of luck!

Hey Jenn,

I was on Ipi (for stage IIIB) but only made it through 2 infusion. A week after my first infusion I had 1 day of low-grade fever/chills/body aches and then it went away. Then right be fore my 2nd infusion I had 2 days of low-grade fever and chills. After my 2nd infusion, that evening my fever went up to 102. It was thanksgiving weekend and I called my onc that evening, he told me to just to take ibuprofen and call if it got worse. They had taken a bunch of blood cultures and UA before my infusion and everything came back normal. The fevers continued for a week straight. the highest it got was 103.2. Just like one of the other posters said I would sleep with towels and blankets under me and have to change my clothes/sheets like 3 times a night. I could control the fevers with ibuprofen but they would come right back once it wore off. I would have shaking chills and then my fever would break and I would sweat like crazy. I did not lose my appetite which was strange. Eventualy after 5 days of this I told my onc and he finally told me to go to the ER. They ran a bunch of tests and everything came back normal except my platelets were low (92,000) and I was mildly anemic. They stupidly didn't run a liver panel. I went and saw my onc the following monday and my LFTs were 2x the normal limit.  They started me on prednisone and the fevers went away immediately. They thought I had autoimmune hepatitis (since 2 days later my LFT's were still trending up even with the prednisone) and I had a liver biopsy with mixed results (liver toxicity injury vs autoimmune hepatits). After being on 60 mg of prednisone for a week we did a fast taper and I finished it 2 weeks later. Everything was normal. That was 2 weeks ago. We discontinued the Ipi after my 2nd infusion since i have NED after surgery and the side effects were terrible. However last night I had a fever of 102.9 again. Not sure what's going on but going back to MGH today or tomorrow. Make sure they check your LFTs! Hoping I don't have to start prednisone again. Best of luck to you!

Hey Jenn,

I was on Ipi (for stage IIIB) but only made it through 2 infusion. A week after my first infusion I had 1 day of low-grade fever/chills/body aches and then it went away. Then right be fore my 2nd infusion I had 2 days of low-grade fever and chills. After my 2nd infusion, that evening my fever went up to 102. It was thanksgiving weekend and I called my onc that evening, he told me to just to take ibuprofen and call if it got worse. They had taken a bunch of blood cultures and UA before my infusion and everything came back normal. The fevers continued for a week straight. the highest it got was 103.2. Just like one of the other posters said I would sleep with towels and blankets under me and have to change my clothes/sheets like 3 times a night. I could control the fevers with ibuprofen but they would come right back once it wore off. I would have shaking chills and then my fever would break and I would sweat like crazy. I did not lose my appetite which was strange. Eventualy after 5 days of this I told my onc and he finally told me to go to the ER. They ran a bunch of tests and everything came back normal except my platelets were low (92,000) and I was mildly anemic. They stupidly didn't run a liver panel. I went and saw my onc the following monday and my LFTs were 2x the normal limit.  They started me on prednisone and the fevers went away immediately. They thought I had autoimmune hepatitis (since 2 days later my LFT's were still trending up even with the prednisone) and I had a liver biopsy with mixed results (liver toxicity injury vs autoimmune hepatits). After being on 60 mg of prednisone for a week we did a fast taper and I finished it 2 weeks later. Everything was normal. That was 2 weeks ago. We discontinued the Ipi after my 2nd infusion since i have NED after surgery and the side effects were terrible. However last night I had a fever of 102.9 again. Not sure what's going on but going back to MGH today or tomorrow. Make sure they check your LFTs! Hoping I don't have to start prednisone again. Best of luck to you!

Hey Jenn,

I was on Ipi (for stage IIIB) but only made it through 2 infusion. A week after my first infusion I had 1 day of low-grade fever/chills/body aches and then it went away. Then right be fore my 2nd infusion I had 2 days of low-grade fever and chills. After my 2nd infusion, that evening my fever went up to 102. It was thanksgiving weekend and I called my onc that evening, he told me to just to take ibuprofen and call if it got worse. They had taken a bunch of blood cultures and UA before my infusion and everything came back normal. The fevers continued for a week straight. the highest it got was 103.2. Just like one of the other posters said I would sleep with towels and blankets under me and have to change my clothes/sheets like 3 times a night. I could control the fevers with ibuprofen but they would come right back once it wore off. I would have shaking chills and then my fever would break and I would sweat like crazy. I did not lose my appetite which was strange. Eventualy after 5 days of this I told my onc and he finally told me to go to the ER. They ran a bunch of tests and everything came back normal except my platelets were low (92,000) and I was mildly anemic. They stupidly didn't run a liver panel. I went and saw my onc the following monday and my LFTs were 2x the normal limit.  They started me on prednisone and the fevers went away immediately. They thought I had autoimmune hepatitis (since 2 days later my LFT's were still trending up even with the prednisone) and I had a liver biopsy with mixed results (liver toxicity injury vs autoimmune hepatits). After being on 60 mg of prednisone for a week we did a fast taper and I finished it 2 weeks later. Everything was normal. That was 2 weeks ago. We discontinued the Ipi after my 2nd infusion since i have NED after surgery and the side effects were terrible. However last night I had a fever of 102.9 again. Not sure what's going on but going back to MGH today or tomorrow. Make sure they check your LFTs! Hoping I don't have to start prednisone again. Best of luck to you!

I also just signed up to do this clinical trial and will be starting at the end of august as well! My oncologist (@ MGH) reccommended we stay away from Ipi d/t the high chance of severe side effects so I will either be taking interferon or pembro. Hoping for pembro! I am young and otherwise healthy (29, semi pro athlete) so I feel like I can handle a crappy year of interferon should I get it. My oncologist also told me that it does reduce chance of recurrence by 10% so it's better than nothing in our eyes. I am stage 3B with 2 WLE (right upper back and in-transit node under right axilla) and no SLNB. Best of luck to you and your wife and everyone else!

-Elana

I also just signed up to do this clinical trial and will be starting at the end of august as well! My oncologist (@ MGH) reccommended we stay away from Ipi d/t the high chance of severe side effects so I will either be taking interferon or pembro. Hoping for pembro! I am young and otherwise healthy (29, semi pro athlete) so I feel like I can handle a crappy year of interferon should I get it. My oncologist also told me that it does reduce chance of recurrence by 10% so it's better than nothing in our eyes. I am stage 3B with 2 WLE (right upper back and in-transit node under right axilla) and no SLNB. Best of luck to you and your wife and everyone else!

-Elana

I also just signed up to do this clinical trial and will be starting at the end of august as well! My oncologist (@ MGH) reccommended we stay away from Ipi d/t the high chance of severe side effects so I will either be taking interferon or pembro. Hoping for pembro! I am young and otherwise healthy (29, semi pro athlete) so I feel like I can handle a crappy year of interferon should I get it. My oncologist also told me that it does reduce chance of recurrence by 10% so it's better than nothing in our eyes. I am stage 3B with 2 WLE (right upper back and in-transit node under right axilla) and no SLNB. Best of luck to you and your wife and everyone else!

-Elana