Anyone have RCC reappear in lungs?

Sammie62

Been there

I have been a lurker on the board for 5 years.  I currently have a one lymph node in my chest that seems to be affected.  I found out I had cancer in July of 2009, and had my right kidney taken out. 

After I was ready to volunteer for a clinical study I found out that I had numerous mets in my lungs.  My Doc at Loyola decided to send me for IL2 treatments.  At the time I was a 58 year old female, over weight diabetic.  Great shape huh.  Well I passed all the tests (to my surprise) and went into the hospital - the first week was OK - I slept a lot - did not touch one bit of food or drink anything but water I took 14 treatments the first round with few side effects.  The second round was a little different more riggers, and bowel problems but I still managed to take 12 doses.  The third session was the best I was absolutely wacked out of my mind - really don't remember a thing had hallucinations most of the time, but still took 10 treatments.  Not bad for an out of shape 58 year old.  Once I got out I did end up with a bowel obstruction but really the entire deal was not that bad.  Would i do it again - absolutely!!!!  I will take any chance of survival.  All of my mets shrunk so we went on a wait and see trial I think that lasted about 1 year then they found some mets growing in my lung - I went for a lung resection and shortly thereafter started Inlyta.  After one week on the full dose of Inlyta I had a stroke and ended up in the hospital for a few days - no lasting effects so i went back on a reduced dose of Inlyta and stayed on it for about one year.  Things started to grow a little bit so I have now been on Votrient for 14 months and holding steady.  i firmly believe if I had not had the IL2 treatments I would not have the results I have had.  I am a happy, healthy, 63 year old with pure white hear and pretty white skin. 

Now just to remind you all that GOD has a sense of humor - In February i fell and broke my hip.  Went to Loyola where all the Docs were afraid it was the cancer that caused the weakness in my hip but low and behond it was just my clumsiness.  You know like cancer was not enough to deal with.  Oh well we gotta roll with the punches.

Sorry this is so long - I had five years of lurking to get out.  One more thing Fox you truly are an inspiration.

Footstomper

TLAlways said:

Again thank you for your

Again thank you for your support.  Today was day 1 with IL-2.  It's not going to be easy. Kevin got very tired dizzy and nauseous after one round but he is pretty tough and we'll fight through this together!

IL2

Not a bundle of laughs, but I think sometimes it looks worse than it actually is. He will be very well looked after and monitored in the hospital but he will need your support. So make sure you look after yourself

Jojo61

Sammie62 said:

Been there

I have been a lurker on the board for 5 years.  I currently have a one lymph node in my chest that seems to be affected.  I found out I had cancer in July of 2009, and had my right kidney taken out. 

After I was ready to volunteer for a clinical study I found out that I had numerous mets in my lungs.  My Doc at Loyola decided to send me for IL2 treatments.  At the time I was a 58 year old female, over weight diabetic.  Great shape huh.  Well I passed all the tests (to my surprise) and went into the hospital - the first week was OK - I slept a lot - did not touch one bit of food or drink anything but water I took 14 treatments the first round with few side effects.  The second round was a little different more riggers, and bowel problems but I still managed to take 12 doses.  The third session was the best I was absolutely wacked out of my mind - really don't remember a thing had hallucinations most of the time, but still took 10 treatments.  Not bad for an out of shape 58 year old.  Once I got out I did end up with a bowel obstruction but really the entire deal was not that bad.  Would i do it again - absolutely!!!!  I will take any chance of survival.  All of my mets shrunk so we went on a wait and see trial I think that lasted about 1 year then they found some mets growing in my lung - I went for a lung resection and shortly thereafter started Inlyta.  After one week on the full dose of Inlyta I had a stroke and ended up in the hospital for a few days - no lasting effects so i went back on a reduced dose of Inlyta and stayed on it for about one year.  Things started to grow a little bit so I have now been on Votrient for 14 months and holding steady.  i firmly believe if I had not had the IL2 treatments I would not have the results I have had.  I am a happy, healthy, 63 year old with pure white hear and pretty white skin. 

Now just to remind you all that GOD has a sense of humor - In February i fell and broke my hip.  Went to Loyola where all the Docs were afraid it was the cancer that caused the weakness in my hip but low and behond it was just my clumsiness.  You know like cancer was not enough to deal with.  Oh well we gotta roll with the punches.

Sorry this is so long - I had five years of lurking to get out.  One more thing Fox you truly are an inspiration.

Welcome Sammie! Nice that you

Welcome Sammie! Nice that you finally came out to play!

You had a very good story to share! Very encouraging. And you are bang on about our Foxy!

Hope to hear more from you!

Hugs

Jojo

 

TLAlways

Peggyz said:

lung mets and HD IL2

I am a ten plus year survivor of metastatic RCC with 10cm, and that survival is due to HD IL2.  I was lucky to get into a program, as there were no other options at the time.  It was not easy, but quite doable, and the important thing is to be treated at an experienced location.  I have written about my experience on my blog at www.peggyrcc.com and that may help explain a few things.  Wishing you the best

 

IL-2 Round 2

Hi Peggy ... I've been reading your blog - thanks for sharing ... learning through others really helps a lot.

Kevin did pretty good during round 1 of IL-2 ... took 11 straight doses but had to stop due to high creatinine levels.

He just received his first dose of round 2 and got really sick, chills, diarreah, dizzy and blood pressure dramatically dropped

They have given him other drugs to counteract the above so let's hope they work and he can get back on track ... as horrible as this is I want him to be able to get as many doses as possible.

Thanks for listening.

Sherri

 

 

 

Footstomper

TLAlways said:

IL-2 Round 2

Hi Peggy ... I've been reading your blog - thanks for sharing ... learning through others really helps a lot.

Kevin did pretty good during round 1 of IL-2 ... took 11 straight doses but had to stop due to high creatinine levels.

He just received his first dose of round 2 and got really sick, chills, diarreah, dizzy and blood pressure dramatically dropped

They have given him other drugs to counteract the above so let's hope they work and he can get back on track ... as horrible as this is I want him to be able to get as many doses as possible.

Thanks for listening.

Sherri

 

 

 

IL2

A number of us have had unpleasant experiences with IL2. Its worth trying tho'. It caused a 50% reduction in my tumours