VOTRIENT

twiceblessed said:

Good morning relda.  In

Good morning relda.  In October 2012 my husband was diagnosed with Stage 4 Papillary Renal Cell Carcinoma, unknown primary origin.  He has been on 800mg of Votrient since December 2012.  He seems to be tolerating it pretty well.  All his hair has changed from dark brown to pure white ( I have pics in Expressions), and he is having some skin issues on his face (flaking, redness/splotchiness).  He also goes through spells where something is either too salty or feels "weird" in his mouth.  When that happens I switch around his diet so that I either do a completely sodium free diet if he's in a salty phase, or I make sure there are lots of crunchy things if he's in a phase where things feel soft and mushy etc.  So far all his blood work has come back good so the Votrient is playing nice with his liver, kidneys etc.  Our main concern is that for some reason the past 6 months or so he has started gaining weight (mostly in his stomach) and we are unsure why, his diet is healthier than ever and he's honestly not eating a whole lot.  I keep a record of what he eats, how much etc to keep track and show his dr at every visit.   So his Oncologist sends him for scans every 3 months but so far there is no indication of why he is gaining weight.  He has also developed blood clots in both lungs, but they aren't sure why.  It could either be from the Votrient or it could be a secondary cancer starting.  Not many actual answers so I know it's confusing. 

I haven't posted in awhile but I had to change oncologists and he did abdominal and chest CAT scans there months part and they are still great with no evidence of mets.  He feels that the teo spots and an area of theickening are still cancer but the votrient is keeping them from growing since there was shrinkage from them when compared to original scans.  His plan is for me to stay on votrient indefinitelu unless liver enzymes or other side effects prevent it.  So far I have been lucky and liver enzymes have been stable or decreased by reducing my rheumatoid arthritis medication methotrexate,  I guess I will have my white hair longer and th occasional GI upset which is managed with phenergan.  I was just wondering if anyone Else has taken votrient indefinitely.  I have been on votrient 400mg since July 2011 with occassional breaks due to elevated liver enzymes.  He now has me doing every six month scans and having my labs followed up by oncologist and rheumatologist every here months.  I continue to feel very blessed with the results. Thanks again for the suppodt this board has been even though I don't post. Rey often.

ivfour said:

Continuing on Votrient

I haven't posted in awhile but I had to change oncologists and he did abdominal and chest CAT scans there months part and they are still great with no evidence of mets.  He feels that the teo spots and an area of theickening are still cancer but the votrient is keeping them from growing since there was shrinkage from them when compared to original scans.  His plan is for me to stay on votrient indefinitelu unless liver enzymes or other side effects prevent it.  So far I have been lucky and liver enzymes have been stable or decreased by reducing my rheumatoid arthritis medication methotrexate,  I guess I will have my white hair longer and th occasional GI upset which is managed with phenergan.  I was just wondering if anyone Else has taken votrient indefinitely.  I have been on votrient 400mg since July 2011 with occassional breaks due to elevated liver enzymes.  He now has me doing every six month scans and having my labs followed up by oncologist and rheumatologist every here months.  I continue to feel very blessed with the results. Thanks again for the suppodt this board has been even though I don't post. Rey often.

I have been in a trial with nivolumab/votrient since May 12,2012.  All of my liver functions are currently well within normal ranges. I'm guessing 45 years of thoroughly enjoing "adult beveridges" has made my liver think it's on vacation with this votrient. I've only missed 1 week  of 800 mg/day and that was due to a lung issue. Let's hope it keeps working for us for a long time.

My wife has clear cell RCC, had her right kidney removed & after 15 months of watching & waiting, now has mets in her lung & liver.  She started votrient 2 weeks ago & has side effects - fatigue & nausea.  She gets her next scans in about 3 weeks.  Do the side effects get better with time, or is she likely to have them until the drug dose is reduced?

ifmiller said:

votrient side effects

My wife has clear cell RCC, had her right kidney removed & after 15 months of watching & waiting, now has mets in her lung & liver.  She started votrient 2 weeks ago & has side effects - fatigue & nausea.  She gets her next scans in about 3 weeks.  Do the side effects get better with time, or is she likely to have them until the drug dose is reduced?

I have been on Votrient since June 2012.  At first I suffered all of the side-effects mentioned in the drug information, diarrhea, fatigue, whitenenin of skin and hair,etc.  I have been able to improve on the effects by changing my diet.  I am gluten, dairy and I in my case tomato free(acid was the problem). Making this change improved my quality of life tremendously.  Today the only major problems I have are fatigue and easily sun burning without protection and in the case of contamination from my diet restrictions severse gastro problems!  Currently I CT scans every 6 months.  My RCC has been generally stable! Nothing worse, nothing better since my original diagnosis of January 2012. 

Happy1956 said:

Votrient

Just started votrient last Thursday had to go off it for 3 days for i went into hypertensive engency. Now blood pressure under control due to being put on medication. Will probley be starting back on it hopefully this all works for me.  Kidney cancer that has gone to the lung.  Prayers for all of u.   Vickie 

Hope it gets better for you.  You are in our prayers.