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2 weeks in Ipilimimab and Nivolumab Trial

dancnbear1
Posts: 54
Joined: Dec 2013

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?

LynnLuc's picture
LynnLuc
Posts: 24
Joined: Sep 2010

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
Posts: 250
Joined: Jun 2013

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's picture
Cate1273
Posts: 35
Joined: Feb 2014

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
Posts: 54
Joined: Dec 2013

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's picture
foxhd
Posts: 2114
Joined: Oct 2011

 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's picture
Cate1273
Posts: 35
Joined: Feb 2014

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
Posts: 250
Joined: Jun 2013

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's picture
Cate1273
Posts: 35
Joined: Feb 2014

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
Posts: 54
Joined: Dec 2013

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.

dancnbear1
Posts: 54
Joined: Dec 2013

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!

Darron
Posts: 250
Joined: Jun 2013

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
Posts: 54
Joined: Dec 2013

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's picture
garym
Posts: 1651
Joined: Nov 2009

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

Cate1273's picture
Cate1273
Posts: 35
Joined: Feb 2014

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's picture
Cate1273
Posts: 35
Joined: Feb 2014

Dancnbear

  You'll be dancing soon

Cate1273's picture
Cate1273
Posts: 35
Joined: Feb 2014

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
Posts: 54
Joined: Dec 2013

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's picture
Cate1273
Posts: 35
Joined: Feb 2014

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's picture
garym
Posts: 1651
Joined: Nov 2009

Good luck today!!!

dancnbear1
Posts: 54
Joined: Dec 2013

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

Darron
Posts: 250
Joined: Jun 2013

Hang in there....remember that the original Nivolumab trials were only 4 infusions. If you have to fight for every one, fight for every one. The combo is potent.

 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Ah DB.. hang in there... you are on the cutting edge and sounds like the doctors are watching very closely...  Thanks for the update...

Ron

Cate1273's picture
Cate1273
Posts: 35
Joined: Feb 2014

Hey DB,

Sorry to hear that. Makes me nervous for tomorrow. I will let you know what happens. Feel well!!

 

Cate

 

 

dancnbear1
Posts: 54
Joined: Dec 2013

Well tomorrow is the day. We will see if the side effects have worn off and I am ready for my 2nd infusion. Right now I have only a few side effects that I am aware of. Still get tired and still losing weight but otherwise I think I am ready! Bring it on baby.

I am ready for the infusion and my dance with the drugs. Going to win and work my way through the physical issues that come with the fight. Going to be cancer free soon and will shortly thereafter buy t-shirts for my friends and family that says:

Cancer Sucks

Dancnbear 4, Cancer 0

Felling Good and ready to kick some ass!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Great attitude, stay strong!

foxhd's picture
foxhd
Posts: 2114
Joined: Oct 2011

Keep up your perspective. Paula used to say," Better living thru chemicals!" Keep the peddle to the metal.

Cate1273's picture
Cate1273
Posts: 35
Joined: Feb 2014

Good Luck DB. I couldn't have my infusion last Thursday for the same reason as you. I hope you are good for tomorrow so you can continue the good fight. I go back Thursday and I have some side effects I need to work through. Praying for you!

 

Cate 

dancnbear1
Posts: 54
Joined: Dec 2013

Cate:

Hope your thyroid bounces back quickly. Good luck.

 

dancnbear1
Posts: 54
Joined: Dec 2013

Looks like my thyroid issues are behind me and I got my 2nd infusion today. Had a nice long talk with the Doctor and everything that I have been feeling was really related to the issues with the thyroid which seems to be normal side effects. Looking back I just needed to have some time for the drugs to work their way through me and for my thyroid to calm down. The 2nd infusion hit me a bit sooner with regards to feeling tired but otherwise everything ok. Friday is my first CT Scan since the program started. I wont know the results until next Tuesday.

 

 

Darron
Posts: 250
Joined: Jun 2013

Great to hear, glad you had a good day. 

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