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My Votrient arrives on Monday....

BLKJAK
Posts: 108
Joined: Apr 2013

So I guess I will start my new journey in the adventures of Kidney cancer! This is my first cancer drug and I am praying for my body to play nice and let Votrient do its thing for a long time with much success. I need to find the bedtime routine so I can sleep through the nausea if there is any.

I also found out why the oncologist recommended stool softener when taking oxycodone. Yikes! Perhaps the diarhea from the Voltrient will offset the binding qualities of the oxycodone. Tongue Out

 

Hope everyone is doing well and are winning the war. It's now time for me to go carpet shopping. Weeeee! 

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

...on the carpeting as well as the votrient. Meanwhile we will keep our fingers crossed for you having a good response to it :-)

/G

BLKJAK
Posts: 108
Joined: Apr 2013

Well, we ended up buying new carpet. Some real nice soft stuff from MoHawk. I'm very nervous about starting the Voltrient. It's kind of the last step in acknowledging that I have cancer. I am also worried about the side effects that I may have and to what extent. I really have no choice. It's either take them or meet my maker. I am looking forward to progress and hopefully having the pain go away. Ultimately I want this damn cancer to go away.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Please note, the drug is called Votrient.  Don't be scared about it - it doesn't suit everyone but most of us find the side-effects very manageable and people who've been on other drugs as well usually say Votrient is a breeze compared with the other drugs.

Why don't you go to the thread entitled Votrient Side Effects and read what people have said there?

BLKJAK
Posts: 108
Joined: Apr 2013

Good thing my subject has the spelling error in large text for everyone to see. Sheesh. I am going to blame the oxycodone and the computer for that. Voltrient sounds more impressive to me though. Sealed

BLKJAK
Posts: 108
Joined: Apr 2013

I just fixed the typos. Perhaps I have a desire for a Chevy Volt and it was carrying over to the drug name? Who knows.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I must say, 'Voltrient' is an electrifying name!  It could have a rival in Supedtent too?

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

VOLTRIENT! THE DEEP SPACE CONQUEROR! Sounds like some bad-ass monster from a DC or marvel comic :-) 

NanoSecond's picture
NanoSecond
Posts: 602
Joined: Oct 2012

I think you must have your movie plots mixed up. The monster is not from deep space.

It is obvious that Voltrient must have been created by a genetic mutation that, in turn, was due to too much nuclear radiation. :)

one putt
Posts: 72
Joined: Sep 2012

I too am on Votrient and pain meds. I take a 20mg oxycontin slow release 2x daily plus 800mg Votrient at bedtime. I still take a stool softener every day. It has been my experience that the two sort of balance each other out and I am fairly regular. Good luck.

BLKJAK
Posts: 108
Joined: Apr 2013

I was just prescribed 10mg Oxycontin 2x a day. Previously I only had 5mg of Oxycondone, 2x every 4-6 hours. I haven't used more than 4 pills per day, but that was just recently. I figured if I'm going to be aflicted with this, I should not have to tolerate pain. Now I have to see how the Oxycontin affect me during a working day. the 5mg oxycodone just took the edge off so I think I'll be fine.

KJones1969
Posts: 158
Joined: Mar 2012

Votrient was the kindest of the drugs my husband took when he was sick. If he could of stayed on it we could of kept going forever on it. I hope you have as few side effects as he did.

BLKJAK
Posts: 108
Joined: Apr 2013

I am thinking about posting my Votrient experiences on my blog here so people can see how it effects another person. Each person is different in how they react I guess. I took my first dose last night at 10:00pm. I haven't had any side effects yet. I'm sure I will, but so far, so good. 

angec's picture
angec
Posts: 658
Joined: Mar 2012

Hi blkjak, glad you started last night.  Why don't you go over to the link about "Votrient  side affects" that TW mentioned that is started as there are plenty of stories there and we can use your in put there so that we keep it altogether.  My mom is on it and she is 80 and is on the 200 mg dose. More info on that link, but she was on 400 mgs and had considerable shrinkage of her tumors.  So be positive, good things are happening.  Be sure too take it two hours after eating at night  then wait an hour after taking it if you want to eat again. All the best to you!

 

Karen!!!  So good to hear from you!  I thino of you often and pray for you.  Xxoo

encodir's picture
encodir
Posts: 1
Joined: Apr 2013

I started taking Votrient last night as well! Previously, I was taking Sutent and it worked well for me. I was able to take several breaks from it as my tumor shrank! The reason my oncologist changed meds was that the side effects were getting harder to deal with with each round. The posts about the side effects from Votrient are encouraging! I am taking 800 mg every evening and will have a blood test in two weeks to make sure my liver is doing ok.

 

Good luck!

saintmont
Posts: 45
Joined: Feb 2013

Hi, I take Votrient mid morning, when I was taking it at night I struggled to sleep. I'am taking 800mg at the momment I see my oncologist Thursday had ct scan tuesday so hoping that the little sucker are at bay. 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I'm a bit curious about your sleep problem - how was it troubled? Is it possible that there's some other cause?  I'm speculating that you're on other drugs too (most of us on TKIs need BP meds to combat the increase in BP that typically accompanies effective TKI therapy) and I wonder whether the sleep problem could be due to something else.

Anyway, we are all so different and need to work out (usually by trial and error) what timing suits us best.  Most seem to take Votrient just before bed, some early morning, well before breakfast, while some, like me, take it around 6 p.m. in order to have a meal an hour or two later - I think (but with only thin evidence) that the meal helps to settle my stomach, but I may be mistaken in that surmise.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

I also take the Votrient just before bed... no issues.. I sleep very well... but then we all are different...

Ron

BLKJAK
Posts: 108
Joined: Apr 2013

Two days on Votrient and no side effects to report yet. I take it at 10:00pm, right before getting into bed. No nausea to report. In fact, I woke up Tuesday and Wednesday morning feeling better and more alert than I had been for weeks. Weird.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

For me the first side effect I noticed was my raised blood pressure..  Suggest you test your BP at least twice a day at first...  I think the main side effects took about 5 days to show up...  Just hope it works for us all...

 

Ron

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I endorse Ron's comments.  [I find out tomorrow whether it's continuing to work for me after 6 months.]

foxhd's picture
foxhd
Posts: 2054
Joined: Oct 2011

Good luck everybody. I'm pulling for you all.

Txgrl
Posts: 24
Joined: Apr 2014

My dad started taking Votrient last night. No side effects so far. Praying it will work.

Blueraidermike
Posts: 16
Joined: May 2013

I took Votrient for 5 months to shrink tumors before surgery.   It worked for me.  I took it 2-3 hours after dinner.   The side effects were managable.    I lost sense of taste about 20 days in.   I experienced bowell issues; but managed them with imodium ID and wipes.   I adjusted some of the food I was eating; in fact, sense I couldn't taste food it made it easier to eat healthier.    My hair on my body (all over, except my head, I am bald?) lightened up.    Regarding BP changes, the key is to by a BP cuff and take it every day to watch it.   My BP before Votrient was 115/78 on average, on Votrient it did rise but still at a decent level.    I was able to work (travel extensively) and excercise (runner) throughout the treatment.  

The key is to manage the side effects, recognize them and make a change.   Your Doc will be watching your blood work for liver changes.     

angec's picture
angec
Posts: 658
Joined: Mar 2012

Hoping everyone's results turned out well.. TW?  Thinking of you!!

Blueraider...i am bit curious as to your situation. You took Votrient BEFORE surgery?  What size was the tumor before hand? Would you mind sharing your information?  I am glad things are working for you.  I always wondered why they didn't try to use the Votrient and other meds before surgery to see if the tumors would go away and spare the kidney, so your info is of interestert to me. I do know they like to remove the primary tumor anyway.

Hugs to all!

Blueraidermike
Posts: 16
Joined: May 2013

Angec,

Here is my experience.  I had my right kidney removed as a child due to a different cancer. I was dx in July of 2012 and they felt like it they could shrink the tumor the chances for a successful open partial would be increased.    So my tumor was about 6.5*7cm. , so since I only had one kidney our goals were to cut out the cancer but to preserve the kidney so I could qualigy for existing treatments and future clinical trials (I have lung mets and other suspicious spots).      After 5 months it wasn't down a lot, mayber 5.5*6cm but was full of necrosis - dying on the inside.    I was up for staying on the Votrient but the surgeon felt like he could successfully remove the tumor so we went ahead.   From a timing perspective, started in Sept and stopped late January. Then surgery on Feb 12.   So I am operating on 2/3's of one kidney today and awaiting my slotting for a phase 1 clincial trial of the NIB/Ipi combo.   

Bottomline, as we all know there is a lot of "art" applied to the science.   No hard and fast rules, but the risk worked out in my case. 

angec's picture
angec
Posts: 658
Joined: Mar 2012

Thank you blue for the info.  I think it was a great idea to take the meds before hand and it it seems to have worked nicely.   I am hoping you get in the trial real soon and it works very well!  Please keep us updated.  All the best to you and I really admire your positive fighting attitude!!  Keep it going!!

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