Kidney Cancer - stage IV and HD IL-2

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RE: Kidney Cancer - stage IV and HD IL-2

by BarryOz on Thu Nov 29, 2012 11:04 PM

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Thanks for your interest. Yes, clear cell tumor. Furhmann Grade 2. 10cm on lower left pole of left kidney which underwent radical nephrectomy Jan 10. Wish I had taken Sutent prior as this may have prevented mets to the lungs.

RE: Kidney Cancer - stage IV and HD IL-2

by BarryR on Fri Nov 30, 2012 02:58 AM

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Piper Pilot - it was clear cell with rhabdoid sarcomatoid features (less than 50% of the tumor).  When I had the VATS surgery only one of the five cancerous nodules was sarcomatoid.

BR

RE: Kidney Cancer - stage IV and HD IL-2

by MarcyS on Mon Dec 03, 2012 03:50 PM

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Barry-

Congratulations!  I agree HD-IL2 is the only way to go!  My husbands treatment was a mirror image of yours only Seattle Cancer Care Alliance had him do it twice.  The 1st time showed shrinkage but the tumors were still there.  He was Grade 4 Stage 4.  As bad as it gets. 

We are so grateful that we chose this as our treatment.

Good luck to you.

Marcy

RE: Kidney Cancer - stage IV and HD IL-2

by BarryR on Mon Dec 10, 2012 06:08 PM

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Marcy,

Thanks for the note, before i went in for the HD IL-2 i read your day by day account of your husband's treatment and that helped me have the faith that i could get through it all - I also had the benefit of a new friend who was undergoing HD IL-2 for melanoma at the same time (he was one course ahead of me) so I had two first hand accounts.

BTW, it amy not be clear in my account but I had four seperate hospital stays for treatment, my friend with melenoma had seven.

Barry

RE: Kidney Cancer - stage IV and HD IL-2

by PeteBarron1 on Tue Dec 11, 2012 05:47 PM

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On Nov 26, 2012 6:16 AM JPFPEF wrote:

My husband was diagnosed with Papillary RCC, Stage IV with Metastatis (lungs/torso) on 5/2/11. He had no symptoms except that he was very tired. In June, 2011, he too had a radical nephrectomy. His kidney had a 5" mass on it, and it was also attached to his pancreas & liver. His group of Oncologists at Beth Israel Deaconess Medical Center, Boston, MA were going to originally put him on Sutent (he didn't quality for IL-2 because he has Papillary, not Clear Renal Cell Carcinoma). Then, about 100 people qualified for a clinical trial study drug that he started in January, 2012. The drug he takes is called Tivozanib. We went this way because the oncologists felt that this was a better route than Sutent, as they told us that Sutent eventually stops working. Tivozanib is going to be FDA approved in 2013. This drug has been amazing. It has shrunk 2 areas in his lungs that are being monitored by Torso CT Scans (part of the clinical trial) by 24%. He also has cavities where there was Cancer - that's great. He also has other improvements as well. The only side effect he has had is that when he reaches the 3rd week on the drug (then he goes off for 1 week), his voice gets a bit raspy, and he might have to take Imodium AD once. He has not had to go on high blood pressure meds. as many of the people who take this drug have. So, at this time, his Cancer is stable, no new growth, and he works 40 hrs./wk.

I hope this has helped.

Hi.  3 years ago I was told that I had Kidney Cancer.  Clear Cell.  They took my left Kidney and tried to get me to do some test where half the people take a drug and half take a placebo.  I refused the test because I didn't want to be a gunea pig.  One year ago I went to the hospital coughing up blood.  They did a scan and gave me quite a scare.  Told me I had mets all over my lungs and my left adrenal gland.  They still today aren't sure about the lungs.  Some have gone away and they think they might have been blood clots.  I haven't coughed up blood in almost 6 months now so whatever was causing that has since passed I think.  The spots on my lungs still show up but they don't do anything. I was told that my Renal Cell Carcinoma had returned and that I am stage IV.  In December last year we started me on Tivozanib.  I am in my 13th cycle of it now and wanted to compare notes with you if you don't mind.  In reading your post it looks like we are comparable.  I didn't have it on pancreas and liver though as far as I know.  I do not have a blood pressure problem and I feel that is because I smoke a little bit of pot daily.  Doctor things it may be helping as well. I get the 15 to 16th day raspy voice as well.  I'm having it today.  My loose stool has all but gone away.  Hardly ever have that anymore.  No hypertension either.  My hands started to tingle a couple of months ago and they think it may be due to my thyroid so I've started medication for a lazy thyroid but other than that I feel pretty good.  I work a regular week although I do get tired by the end of the day.  What else do you guys have to share?  If I think of anything I will be happy to.  I'm in Las Vegas. 

RE: Kidney Cancer - stage IV and HD IL-2

by fine69rs on Sun May 05, 2013 04:53 PM

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On Dec 03, 2012 3:50 PM MarcyS wrote:

Barry-

Congratulations!  I agree HD-IL2 is the only way to go!  My husbands treatment was a mirror image of yours only Seattle Cancer Care Alliance had him do it twice.  The 1st time showed shrinkage but the tumors were still there.  He was Grade 4 Stage 4.  As bad as it gets. 

We are so grateful that we chose this as our treatment.

Good luck to you.

Marcy

Hello Marcy, I'm taking a look at your post regarding yor husbands experience at SCCA. I am a 54 year old male with mRCC. I had my left kidney taken out in June of 2011. In fen 2013 I had an occurrence with a 1.6 cm lung met an a disappointing 5 cm mass on my right kidney. also there is some involvement on the renal vein and IVC. I am currently a Vancouver BC resident but had a conversation with the patient administration folks about doing a consult as I really want to do IL-2. I am happy to hear they do it there. I think you likely went to the U of W Hospital for this. Please get back to me at my email at Michael.galbra ith@dccnet.com. Perhaps we cold have a conversation. Michael
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