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foxhd

Cubanito said:

Fox did you also do IL2

Fox did you also do IL2 treatment? If so how did it go for you?  I have gone one round 2 cycles. First cycle I received 10 of the 14 doses. Second Cycle only 4 and I checked myself out. I felt like the room was closing in on me and with missing doses I let it get the best of me and checked ouy, So out of a possible 28 doses I received 14. I guess the not knowing if its working was the worse part for me that and being strapped in with all the monitors etc... I am hoping I get good news in 2 months and will be able to do another round of IL2. From all the reading I have done it seems like it's the only treatment that has shown to actually cure some patients, granted the percentages aint all that great but hey cant blame a guy for dreaming he will be one of the lucky ones LOL. 

Yes.

My above comment was for my IL-2 experience. I also did not tolerate alot of doses either. Last round of IL-2 was only 4 doses over 2 days. It took 3 months to recover from that. I understood how hard it might be and I stood up to the challenge. You will too. Just keep belief that your body will tolerate  anything they do to you. I'm 5 years with always something going on. But I am doing well. It is more of a chronic disease at this point. There are excellent advances in kidney cancer care. If you have read any of my posts, you'll know that I am really excited to be starting new treatments myself. We don't have to be cured although that would be nice.

todd121

Hi and Welcome!

Welcome to our little club, Luis!

Sorry you have to join us with seniority.

I too am Stage 4, but currently NED (as far as we/they know...). I started with a single tumor, Stage 3, losing my right kidney. Then 2 years later a tumor grew in the adrenal gland on the same side which they had left for me (the original tumor was far from the adrenal, so it made sense at the time). Had my adrenal gland removed last February.

Glad you are posting here and hope you'll stick around and share how you are doing and what's going on with you.

Wishing you the best with your treatment.

Todd

Footstomper

Cubanito said:

Thanks Dutch. I actually have

Thanks Dutch. I actually have a very good Doctor that I like a lot. Gzood to hear you have 3 years and counting , that is exaclty the kind of stuff I like to read! 

Diagnosed stage 4 May 1st 2013

Kidney removed, IL2 August - Nov 2013. Tumours halved. hideous side effects Il 2 stopped by Dr.

Sutent: cancer reduced but side effects unbearable accordng to Dr.

Inlyta: as with sutent, lack of appetite and strong fatigue led to collapse and hospitalization Mediation stopped

Now on a trial with Avastin. No side effects

Not dead and dont have much intention of doing so

being so close to death gives me a different perspective on the sunrise

Everyday is antique and unique

Cubanito

todd121 said:

Hi and Welcome!

Welcome to our little club, Luis!

Sorry you have to join us with seniority.

I too am Stage 4, but currently NED (as far as we/they know...). I started with a single tumor, Stage 3, losing my right kidney. Then 2 years later a tumor grew in the adrenal gland on the same side which they had left for me (the original tumor was far from the adrenal, so it made sense at the time). Had my adrenal gland removed last February.

Glad you are posting here and hope you'll stick around and share how you are doing and what's going on with you.

Wishing you the best with your treatment.

Todd

NED

Thanks for the welcome! i Have seen quite a few post with people stating they are NED. My question is what is NED? 

Best regards,

Luis 

Positive_Mental_Attitude

Cubanito said:

NED

Thanks for the welcome! i Have seen quite a few post with people stating they are NED. My question is what is NED? 

Best regards,

Luis 

NED= No Evidence of Disease. 

NED= No Evidence of Disease.  He's everyone's best friend that everyone wants to see more often.

todd121

Cubanito said:

NED

Thanks for the welcome! i Have seen quite a few post with people stating they are NED. My question is what is NED? 

Best regards,

Luis 

NED

It means they don't see any tumors.

One of the bad things about our cancer is there isn't a test to see if it's gone or not. They do a scan (usually CT of chest, abdomen and pelvis) and if they don't see any tumors, they say you're NED.

Some cancers they can tell from markers in the blood (I think).

Once you've been shown to have RCC, it doesn't get better than NED.

Todd