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hubby with collecting duct carcinoma starting on VOTRIENT

Posts: 16
Joined: Aug 2012

hey everyone...

my husband is starting on Votrient as of today after being diagnozed with collecting duct carcinoma which mets to his lungs...the kidney and tumor were removed and now the mets are left to fight off...just wanted to ask anyone whos on votrient if they are haveing any side effects? how bad are they? and how are you dealing with it? and how votrient is working for you??? any other usefull info would be appriciated!!!

thank you so much in advance, good luck to you all

Posts: 5
Joined: Aug 2012

My wife was on Votrient for about three months, the most pressing issues of the three pages of side effects to her was liver enzymes kept shooting up and making he deathly ill. After several periods of having to get off the drug completely because of extremely high enzyme levels they reduced her dosage from four pills to two a day, but it still went to the 600 range, normal is 20-60 or so. She also battled nausea. We ended up having to get off Votrient all together and now she has been on Axitinib for about 4 weeks. The sad part is Votrient was working exceptionally well with her lung MEDS, we expect good news from Axitinib as well. I hope your husban does not have the same trouble with Votrient, it was our Doc number one choice of cancer drugs.

Posts: 7
Joined: Oct 2012

I've been on Votrient for two months now and have very little side effects. I battle fatigue but that might be the cancer not the drugs. My taste buds are messed up nd my hir hs turned white. I get. Scan in two weeks to see how it's working. So far I'm a believer in Votrient.

Posts: 49
Joined: Nov 2011

I have been on votrient for about 16 months. I have had to be off of it a couple,of times due to elevated liver enzymes but only for about two months total. I had to take half the dosage of 400mg (2 tablets) daily but have had great results for the lung mets. I have had two sets of scans to show no evidence of disease and will be having scans again in December. I have some issues with fatigue, nausea, and vomiting but it is tolerable and I use phenergan that helps. I also have white hair but actually is probably better than the grey that I would of had naturally.

Texas_wedge's picture
Posts: 2803
Joined: Nov 2011

I feel for you guys on the US eastern seaboard - as if you haven't had enough to contend with after Frankenstorm, now you have snow-bearing nor'easters about to batter you. You won't need a foreigner to tell you but I still have to say: don't take any unnecessary chances with the forces of Nature and good luck to all of you who are in the firing line.

So, here's a bit of light relief, for my fellow golfers in particular:
It's well said that "It's an ill wind that blows nobody any good."

At age 70 it's nice to be able to "complain" at having 3-putted on the 18th to make a 4 on a 419-yard hole!

The Carnoustie Championship Course is closed this week for maintenance so we played one of the 'minor' Carnoustie courses - the Buddon Links. We had a good, stiff Carnoustie "breeze" that led to some horrific scores on the front 9 but a different story on the way in.

With the wind behind, on the 16th I piled into my tee-shot with my new R 11 S driver and made 323 yards - not bad in November in Scotland, with the temperature not much above freezing and the ground soft and damp, with not much roll! It's the only par 5 on the course, 498 yards. I was slightly right with my second shot. killed in the semi on the upslope to the green; putted from about 10 yards short and hit the pin for what, if it had dropped :( would have been an eagle (you guys call it a "double birdie"?).

So, on the 18th, with the same following wind, I said to my pal Brian "This one's gonna go!" and I really went after it with my drive. He walked up to me with a big grin on his face as I pulled my putter out for my second shot and said "You just can't resist the chance to say 'I was putting for my second on the 18th', can you?" With an even bigger grin, I said "Of course not". I made the show of squatting down to check the line and hit the putt. The fairway is gently downhill all the way to the green and I vindicated my sobriquet (Texas Wedge) by finishing well up the green about 20 feet from the flag, having made a 117 yard putt. I took some time over the birdie putt and avoided the cardinal sin of being short by finishing three inches past the hole for a tap-in par.

That's my last round of golf before starting on Votrient in a few hours time but it was about as satisfying as I could have asked for. Now I'll at last join the ranks of the older golfers who talk even more about their health problems than they do about the latest football games!!

one putt
Posts: 72
Joined: Sep 2012

I started my day reading about your exploits at Carnoustie.When it comes to putting,Michael Phelps has nothing on you.No doubt the putt was short because you forgot to allow for windage:).The only way I could drive a golf ball 304 yards would be to put it in the trunk(boot) of my car and drive it down the fairway.By the way, we use the term eagle,but an albatross is usually called a double eagle.Thanks for the golf story.It's the closest I get to playing golf these days.
On a more serious note,good luck with Votrient.I hope it works as well for you as it has for me.May your side effects be minimal.

Texas_wedge's picture
Posts: 2803
Joined: Nov 2011

Thanks John. I hope so too and I hope you keep improving to the point where you're playing again soon.

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