2 weeks in Ipilimimab and Nivolumab Trial

Two weeks in and all blood tests are fine but this week I have really felt tired and just cant seem to catch up on my sleep/rest. Body just aches and I have had some issues with being a bit lightheaded at times. Hands are starting to peel which I was told could happen. 2nd infusion on March 4. Are these side effects normal? Anyone else have any experience with these two drugs in combo with each other?

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Comments

  • LynnLuc
    LynnLuc Member Posts: 22
    yes. I was ( and am- still

    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.

  • Darron
    Darron Member Posts: 310 Member
    My aches from autent

    I attributed all if my aches to Sutent, not to the Nivolumab. It was a different combination than yours. I did have hand and foot tenderness. Udder cream worked, grab some from CVS. Keep us posted on progress.

  • Cate1273
    Cate1273 Member Posts: 35
    In same trial

    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
    dancnbear1 Member Posts: 86
    Cate1273 said:

    In same trial

    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.

    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

  • foxhd
    foxhd Member Posts: 3,181 Member

    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 wonder about fatigue

     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
    Cate1273 Member Posts: 35

    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

    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!!!

  • Darron
    Darron Member Posts: 310 Member
    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

    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!

  • Cate1273
    Cate1273 Member Posts: 35
    Darron said:

    Don't go private

    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!

    1st scans

    Hi Darron,

     

     My first infusion was Feb. 13 and my second is March 6th. My first scan isn't until March 26th so that is about 6 weeks. We'll let you know how it goes. I hope we do as well as you and Fox!!!

  • dancnbear1
    dancnbear1 Member Posts: 86
    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!!!

    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!

  • dancnbear1
    dancnbear1 Member Posts: 86
    Darron said:

    Don't go private

    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!

    Darron:
    Will not go private.

    Darron:

    Will not go private. My first scan is 3/21/14 and will probably have an update on my 4th infusion which is 3/25/14.

  • Darron
    Darron Member Posts: 310 Member

    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!

    Friends in the trial

    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
    dancnbear1 Member Posts: 86
    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

  • garym
    garym Member Posts: 1,647

    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

    Thoughts and prayers...

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

  • Cate1273
    Cate1273 Member Posts: 35

    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

    2nd Infusion

    I'm so sorry. But you will overcome this and get right back in there. We'll be comparing notes soon. You're in my thoughts and prayers.

  • Cate1273
    Cate1273 Member Posts: 35

    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

    2nd Infusion

    Dancnbear

      You'll be dancing soon

  • Cate1273
    Cate1273 Member Posts: 35

    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

    Thyroid issues

    Hi db,

      Well today was supposed to be my second infusion and guess what my blood work showed? Yes you guessed it hyperthyroidism. I have to see an endocronologist next week. They might give me the second infusion next week if the thyroid settles down. Do you have to go to the endo doctor? I hope it does. I hope yours does too.

     

    Cate

  • dancnbear1
    dancnbear1 Member Posts: 86
    Cate1273 said:

    Thyroid issues

    Hi db,

      Well today was supposed to be my second infusion and guess what my blood work showed? Yes you guessed it hyperthyroidism. I have to see an endocronologist next week. They might give me the second infusion next week if the thyroid settles down. Do you have to go to the endo doctor? I hope it does. I hope yours does too.

     

    Cate

    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.

  • Cate1273
    Cate1273 Member Posts: 35

    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.

    Thursday

    Hi

    I go back Thursday for the same routine as you. I have had some side affects as well. still tired as well, but I manage to get to work every day. I hope tomorrow goes well!! I'll be praying for you. Let us know how well you do!!

    Cate

     

  • garym
    garym Member Posts: 1,647

    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.

    Hang in there and...

    Good luck today!!!

  • dancnbear1
    dancnbear1 Member Posts: 86
    Well, had my blood work up

    Well, had my blood work up done today, met with the endocronologist, and had an ultra sound of my thyroid. Unfortunately for me my thyroid levels are extremely high and I heard for the first time something called "Thyroid Storm" which I am supposedly very close to. I was reasured that this is a common side effect (Hyperthyroidism not Thyroid Storm) of this treatment and as fast as I went into Hyperthyroidism I should move just as fast out of and then into hypothyroidism. Body aches are starting to go away but nausea is coming on along with the sweats. Was told that I have now lost almost 30 pounds (thats ok because if you look at me you would think I could be an offensive lineman) but should put that back on once I go into hypothyroidism (I hope not). Finally, because my thyroid levels aree so high I was not able to get my second infusion. I go back next week so I keep my positive thoughts up and hope I get my next infusion then.

     

    DB