Stage 4 RCC taking Votrient (pazopanib)

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RE: Stage 4 RCC taking Votrient (pazopanib)

by peggyznd on Fri Apr 07, 2017 12:22 AM

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RE the timing for the HD IL2 protocol.  The standard approach, which can be varied to some degree, is as follows.  In the hospital for 5 days, with doses of the med every 8 hours, or less if the response requires it. If you go in on a Sunday evening, and start the meds, you would typically go home the following Friday.  THen you would be home/work? at least 9 days before going back in.

Next is a rest period of 4-6 weeks.  Some places it is long.  Sometime near the end of that period, you would have a CT scan to see if the mets are shrinking.  If so, you would likely go back for a second course of treatment 5 days/9 days/5 days.

Though it is good that you want to work, I don't see this a stopping for one month.  Also, since you have had a major surgery and cancer, it is reasonable to use some time to try to stop it permanently, if you are a good candidate.  Otherwise, and if you are lucky, you will be taking Votrient or other drugs for many years--all the time.  

Who would you talk to about HD IL2 who is experienced in giving it?  Not every hospital can handle the treatment--just as most hospitals don't do all kinds of surgery or transplants--so it is often hard to find some hospital close by.  

PS My last HD IL2 was in Sept of 2004.  Been free of any kidney cancer and any meds and side effects since then.

PEggy

RE: Stage 4 RCC taking Votrient (pazopanib)

by Erman3157 on Sat Apr 29, 2017 08:28 AM

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Did your hair and fatigue go away once your Thyroid was improved?

RE: Stage 4 RCC taking Votrient (pazopanib)

by PersianCat on Sat Aug 05, 2017 01:58 AM

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To control my Votrient side affect diarrhea, I take anti-diarrhea pills (Ammodium-AD, etc)two hoursbefore I take my dose.  It really helps.

RE: Stage 4 RCC taking Votrient (pazopanib)

by Erman3157 on Sat Aug 05, 2017 12:20 PM

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On Apr 29, 2017 8:28 AM Erman3157 wrote:

Did your hair and fatigue go away once your Thyroid was improved?
Nope, my hair is still white and I'm pretty tired most of the time. But it's only been two months since my Thyroid stimulating hormone has stabilized.

RE: Stage 4 RCC taking Votrient (pazopanib)

by lbartnfl65 on Wed Sep 13, 2017 04:28 PM

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My husband started Votrient in May of this year.  Same scenario. He went in ICU with pneumonia in March. That led to stage 4 RCC diagnosis. Radical nephrectomy of the left kidney which has a very large tumor invading its boundaries. The right kidney is just as diseased. The Votrient has caused major weight loss due to lack of appetite, nausea, textures, etc  Also diarrhea, lowered blood pressure (which isnt common), fatigue and now an issue with pressure points in his feet due to loss of fat. Our first pet scan after the Votrient started was inconclusive aka a failure. He has a mass in his neck that appears to have shrunk. I am afraid the weight loss is going to cause his demise. Any suggestions from anyone are very welcome!  We are doing weight gaining shakes, Ensure Plus and any food he can manage to take a couple of bites of without feeling sick. 

RE: Stage 4 RCC taking Votrient (pazopanib)

by Minimartin on Thu Sep 14, 2017 02:52 PM

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I was diagnosed with Stage IV kidney cancer that spread to both lungs in July 2016. Ask your oncologist if samples of votrient are available to try first. It is an expensive drug. I was on half-dosage for a short period of time and could not tolerate it at even half doses. Side effects: brutal mouth sores, body hair turned white, skin became dry and thin, loss of appetite, depression and nail cuticles disappeared. I switched to Opdivo in October of 2016 and the largest tumor in my left lung disappeared. By February 2017 they myriad of tiny tumors in both lungs had disappeared. My scan was clean! Since then, I am suffering from side effects of the Opdivo that began in January 2017. I did not have any until then. If the votrient does not work well for him, ask about an immunology drug. God bless and I wish you well.

RE: Stage 4 RCC taking Votrient (pazopanib)

by Erman3157 on Thu Sep 14, 2017 03:48 PM

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What were your side effects from Opdivo?

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