2 weeks in Ipilimimab and Nivolumab Trial

yes. I was ( and am- still really tired.) knuckles ached a lot other joints as well. I had mild flu like symptoms usually lasting for 8 hours hitting me about 2-3 days after infusion. As the trial went on the "flu" came closer to the infusion day and eventually on the same day and a little rougher. My thyroid eventually blew out as well.

I am scheduled for my second treatment of IPI/NIVO on March 6th. My side effects have been very minimal until Thursday when I became achy everywhere. Bones, muscles. Hard time sleeping. It took two weeks for this to show up so I hope the next round will be better. My dose is 3 Nivo and 1 IPI. That is lower than yours. My last bolod tests showed slightly elevated liver enzymes. I am hoping they go back down. I will let you know what happens after this next round. Please keep me posted to your progress.

dancnbear1 said:

Cate, 
My second infusion is

Cate, 

My second infusion is 3/4. Initial side effects were not bad but as I get farther away from the first infusion my body aches more. Hot shower and some aspirin help a little bit but not much. Fatigue is tough and I find myself needing to take a nap almost every day. Did have a small episode of skin pealing but came and went quick. Blood tests have been perfect for me. Since we are both in the same trial and our infusion dates arent too far apart it would be great to keep in touch. I am stage 4 RCC. Had left kidney and renal gland removed in '08 and was one month short of 5 years cancer free when they found growths in my thyroid, right lung, and lymph nodes in my chest. My trial is based on Philadelphia. I also had skin cancner in '06 and prostate cancer in '08 but none of the cancer's were related. Lucky me.

 

Best of luck

 I received 10mg/kg every 3 weeks for 18 months. Maybe I had the fatigue but I was pretty sick when I started on it. Then over time I just got used to the new way that I felt. So, it gets to be normal and you just go about your business. It is also a very stressfull time and fairly early in this fight so there is an emotional toll. I think the constant thinking of having cancer is consuming and your whole life is changing. There is alot going on. No wonder there is fatigue. This drug works and since you guys are in the trial, you were carefully chosen to have good outcomes. That is exciting and I am really happy for you. It saved my life.

Cate1273 said:

Second infusion

Hi Dancnbear,

 

  I think it would be great to keep in touch and compare. I am sorry for all you have been through and I hope this trial gets you back to cancer free. I hope it does the same for me. My trial is also in Philadelphia. I am at Foxchase Cancer Center. Where are you? Good luck tomorrow!!!

Don't go private on us, I want to hear all about the shrinkage in your fist scans. do you scan at 6 weeks in this trial?

i hear the ipi-Nivo conbo works faster that the Nivo alone.

keep us posted!

dancnbear1 said:

I believe we have the same

I believe we have the same Doctor. I believe that at this stage they had 3 new folks in this trial so there is one more we dont know about. Small world!

I have developed a good friendship with a guy in my trial. You should plan to get your families together. It was a great help for my wife to meet another patient and spouse on the same trial. You will be amazed how similar your stories and situations come together.

It is a great opportunity for both of you. Take advantage of it!

dancnbear1 said:

Well, today was supposed to

Well, today was supposed to be my second infusion and it didnt happen. My blood work up showed that I have extreme hyperthyroidism ( a side effect of the combo of these drugs) and so I can not get another infusion until things come back on line. They have put me on a drug that should help and with some luck in two weeks I can get back on track. As I stated before I have been vey tired and my body has ached which I now know are common side effects of hyperthyroidism. I have also lost almost 20 pounds over the last 5 weeks which is another common side effect. Luckily this problem seems to be common with these two drugs and they know how to correct it and get me back on track. Will keep you all in the loop in another week or so. Keeping my fingers crossed.

 

db

Hang in there db, it will be worth it in the long run, keep your eyes on the prize.

dancnbear1 said:

Well, today was supposed to

Well, today was supposed to be my second infusion and it didnt happen. My blood work up showed that I have extreme hyperthyroidism ( a side effect of the combo of these drugs) and so I can not get another infusion until things come back on line. They have put me on a drug that should help and with some luck in two weeks I can get back on track. As I stated before I have been vey tired and my body has ached which I now know are common side effects of hyperthyroidism. I have also lost almost 20 pounds over the last 5 weeks which is another common side effect. Luckily this problem seems to be common with these two drugs and they know how to correct it and get me back on track. Will keep you all in the loop in another week or so. Keeping my fingers crossed.

 

db

Dancnbear

  You'll be dancing soon

dancnbear1 said:

Cate:
I go back on tuesday. I

Cate:

I go back on tuesday. I have blood work up then I go to the endocronologist. They have put me on a pill and I hope that it gets the thyroid under control. It seems what we are going through is farely common. I will let you know how it goes. I have had some more side effects. Still tired, body still aches, did lose 20 pounds, but last night my wife said I looked green and my body began to shake. Feel much better this morning so I hope I am on the backside of the effects. Hang in there and I will update you on how my Tuesday meeting goes.

Good luck today!!!