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Hello, Thanks for this board!

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

Hi Everyone,

  I have been reading for a while. I thank you all for sharing so much information. It has been so helpful and given me hope. My name is Catherine. I am 58 and I had a radical nephrectomy in May of 2013. At surgery, I was told stage 2 but after removing a 12 cm tumor and finding a met in each lung I learned it was Stage IV grade 3-4. The lung mets were just watched with no growth to date but a scan in November showed a mass to T-6 vertebrae. So in December, I received 5 Cyberknife treatments.  January scan showed growth of lymph nodes in pelvis. Luckily one spot had just opened in the IPI/Nivo trial at Foxchase Cancer Center. I passed the tests and had my first treatment Feb 12. So far, side effects have been ok.  I did break out in hives when they were administering the Nivo, so they had to stop and give me Benadryl before the rest was given. Now they will give me Benadryl first. Started to get a little achy yesterday. Next treatment is Thursday. Hopefully, Nivo will be the drug!!!

foxhd's picture
foxhd
Posts: 2585
Joined: Oct 2011

Sorry you had to join us. But since you are here, good luck with the trial. Nivo(lumab) has saved my life and many others here. In a short while, you may not even notice the side effects. I forgot about them except for some fatigue. But I'm becoming an old fart so maybe I just need naps. The great news is that we are living way past early kidney cancer patients. I for one expect to be around for a long time. I had a poor prognosis at first but now my doctor thinks that when I do pass away, it won't be from kidney cancer. I'm betting on a meteor. (I think that is a cheap beer and pizza combo). Sounds like your attitude has the right adjustment. Good for you. Attitude is way under rated.

foxhd's picture
foxhd
Posts: 2585
Joined: Oct 2011

After I replied, I noticed my number of posts. Over 1500! I guess that shows promise or a flappy tongue. Let's hear it for long life after kidney cancer!

Limelife50's picture
Limelife50
Posts: 459
Joined: Nov 2011

I joined 3 week after you Fox and i have only around 400 posts guess i need to start sharing more of my wisdom.

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

I am hoping we all have long lives after kidney cancer!!!

Limelife50's picture
Limelife50
Posts: 459
Joined: Nov 2011

Good luck Catherine with the Nivo a few members on this board have gotten some awesome results from it i am sure they will be posting here soon.

Darron's picture
Darron
Posts: 284
Joined: Jun 2013

Always good to hear more people joining the Nivo club. I am with Fox, it is saving my life. I am on the maintenance part of my trial since finding No Evidence if Disease on Jan 2.

There is another post just a few items down about Ipilumamab-Nivolumab trial from Dancnbear. There is some discussion there about his side effects. He recently started the trial as well. You should both share notes.

keep us posted and be well.

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