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Question on new med -Votrient

Sammie23
Posts: 11
Joined: Aug 2016

Hello, Im new to this so Im hoping to get some information on some new medicine Im taking.

I was diagnosed with Stage IV/Grade III kidney cancer in 2008. After 8 years it metastized to my lung which they watched over a 1-2 yr period and decided to have it removed. That was in April. Had a CT in late July and there is an area that has now appeared in my liver. It was an old area that appeared a year after I had my kidney removed.

I was on Afinitor all this time and now doctor has decided to change my med to Votrient.

Is there anyone that may be taking this and can provide some information as what to expect?

Im feeling extremely nervous at this point. Im not able to get in to consult with a surgeon until Aug. 23rd for having it removed.

Thanks,

 

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Although I'm no help regarding the meds, I wanted to welcome you and wish you well.

Donna~

Sammie23
Posts: 11
Joined: Aug 2016

Thank you, appreciate the welcome.

 

mrou50
Posts: 389
Joined: Mar 2013

Votrient gave me nine months of good news it worked quite well that is the upside.  The downside is diarhea real bad so keep lots of immodium and very soft tissue, I preffered wet wipes my self.  Flue like symptoms daily, at least for me.  Feeling of exhaustion and i also had chemo brain after a while.  The doctors give you drugs for the side effects and they help.  Good luck and stay positive.

 

Mark

Sammie23
Posts: 11
Joined: Aug 2016

Thank you for the informaton. I was on Afinitor for 8 years which was a blessing. Minimal to no side affects of course the chemo brain was pretty evident.

With new medication I have been stressing about side affects and if this will work. The fact that it worked for you for some time is positive. Your reply has been helpful.

 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I'm with Mark on this, wet wipes all the way. Make sure they are flushable tho' and you wont regret the advice. I even carried a packet to school before I retired.

Teashea's picture
Teashea
Posts: 89
Joined: Feb 2016

Watch your blood pressure real well. also the protein in your one kidney. For these reasons my Dr. took me off of it. 

Sammie23
Posts: 11
Joined: Aug 2016

What medicine did you oncologist put you on. I had to be taken off votrient after 4 day. I had a sever reaction to it and now I'm onopdivo.

It an infusion done every 2 weeks but I was told it works well.

 

Sammie23
Posts: 11
Joined: Aug 2016

I had a bad reaction to votrient....same as when I took sutent.

What were you put on?

Yeric
Posts: 65
Joined: May 2015

I liked it when it was working.  I seldom needed the tissue with votrient.  I am making up for that now.   I watch my blood pressure with everything.  I hope the best for you.

Bobby

Sammie23
Posts: 11
Joined: Aug 2016

I was only on Votrient for 4 days and had sever side effect. Side, Back and chest pain, shortness of breath, headache, light headed, sever fatigue, and of course intestinal issues, by the 4th day I really didnt want to eat a thing.

I had a CT scan to make sure there wasnt a blood clot due to the chest pain. All is clear. I stopped taking the med for the weekend and Im still feeling pretty crappy. Hope my oncologist has another plan because this is just not working.

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

Hi Sammie, I've been on Votrient for 2.5 years.  Started at 800mg.  I remember starting the drug with great trepidation.  I didn't feel good at first.  Blood pressure shot through the roof.  And then I adjusted to the "new normal"-- white hair, diarrhea and fatigue.  My doc was real proactive about adjusting/reducing my dose while I was NED to maintain a good quality of life.  I hope you can work with your doc to find a dosage or treatment that works for you.

LauraM3's picture
LauraM3
Posts: 27
Joined: Apr 2016

rhominator -- you give me hope.

I have been on Votrient for 6 months.  At first, I tolerated it well.  Now, diarrhea and immodium are my friends.  My blood pressure shot through the roof but is controlled now.  White hair everywhere.  Hair dresser keeps my head and eyebrows in good shape with color.  Fatigue in the evening.  Taste in foods have changed.  But, last scans showed massive decrease in tumors in lungs and NED everywhere else.  So...it working.

I was on 800 and then reduced to 600 because of infection.  Holding at 600.  Dr allows me to take an immodium right when I eat to control the diarrhea.  So far so good and i don't have stomach cramps like I do when I eat.  Something to think about.

 

Also - I don't know if you are reacting to the meds because for me it seems like the longer I take it the more side effects I get.   Hope you feel better.

 

 

 

njkate07's picture
njkate07
Posts: 19
Joined: Aug 2016

That is my husbands side effects as well. Diarrhea so bad sometimes he doesn't want to leave the house. White hair and massive fatigue. Taste in foods as well.

For the most part yesterday I watched him sleep in the recliner all day.

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

LauraM3, we're in sync: I forgot about the intestinal cramps and taste buds.  Just part of new normal.  I try to keep my mouth shut when I'm asked how something tastes:  'got a big laugh at bible study when I complimented the "cherry muffins" which were really "bananna nut muffins".

Sammie23
Posts: 11
Joined: Aug 2016

Thank you all for providing what you all have experienced. Im meeting with the oncologist today to see what steps to take next. Ill do my best to keep a positive attitude and to handle whatever meds come or if this is what I will need to take regardless. I cant say enough how comforting it is to speak to others that have had the same experience. It alleviates alot of anxiety and worry.

 

Rob57's picture
Rob57
Posts: 25
Joined: Aug 2016

I had my left kidney removed in May of 2012. Yearly scans after that. Found a mass in the lymph node in my chest in June 2014. Had not taken any medication to that point. Had a media stenoscopy to get a biopsy of the mass. Both samples were negative but the thoracic surgeorn said that it looked like cancer to him. Waited a few months, had another scan and the mass had grown. Doctors decided to radiate the area. That was done in October, 2014 around Halloween time. Waited till January to see what the results would be. First scan after the radiation showed reduction in the size of the mass. That was January 2015. My oncologist started me on Votirent a few weeks later. Subsequent scans showed continue reduction. Right now it is stable and shows no signs of regrowth. Doctor would like to have it removed but too close to vital areas like my aorta. The Votrient has not been that bad. First month my hair started turning white. It is all white now, all over my body, and it thinned a little but still looks good. Do have some fatigue, but not terrible. Have to rest a little more often when I do chores, but it really doesn't keep me from doing anything. The worst side effects are intestinal. I developed pancreatitis from the Votrient. Not many people do but it has been documented. At first my oncologist thought the cancer may have spread to my pancreas, but after extensive testing that was ruled out and the likely cause of my difficulty is the drug. The intestinal problems are the worst thing for me, but they are manageable. Eat a healthy diet and stay away from fats and it will be a lot better. I also take a liquid probiotic in the morning and evening and that helps. Also make sure to take a good multivitamin. So for me about 1 year and 7 months so far. You may go through up and down cycles (feeling good and bad), I do. Overall I would say that this drug is not a problem for me to take. Hope that it is the same for you. It seems to be helping me.

Rob57's picture
Rob57
Posts: 25
Joined: Aug 2016

Make sure that you take the drug at least 2 hours after eating. If you take it before you eat make sure to wait 1 hour before eating anything. Food will tend to magnify the effects of the drug.

faithlou's picture
faithlou
Posts: 41
Joined: Jan 2013

Votrient worked well for me for 18 months.  I took blood pressure meds to keep my blood pressure in check. Started at 800 mg dose, then 600,them 400. 400 mg dose worked for me.  Had to adjust to 400 dose because of my liver blood work was out of range. Diarrhea was a constant issue, managed with immodium. 

I'm currently on Opdivo.  It is working very well, without those nasty GI issues.  Wishing you the best.  

(Almost 4 years Stage 4 RCC) Cool

Sammie23
Posts: 11
Joined: Aug 2016

My oncologist has taken me off the Votrient. They now are wanting to put me on Opdivo every 2 weeks. It almost feels like a step back. When I had gotten off the IV chemo years ago I was put on pills which was a blessing in disguise. Since I work full time managing my meds was much easier. Now Im going to have to manage my life around the time I need to take off to do the Infusion treatment.

Now im worrying about the cost of everything, from office visits, meds and a new surgery ahead of me (2nd one in 5 months). It been pretty overwhelming and Im hoping this will pass to where things will work out. Especially praying that the medicine will work for me.

The phrase when it rains it pours... well I feel as if Im in a hurricane.

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

I'm sorry to hear that Votrient didn't work for you.  That 'cabo' med that foxhd and Teashea are on sure sounds interesting for a 2nd line treatment.  Its an oral med.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Are the same thing. Having tried sutent et al and measuring my day by the number of trousers I got through. Nivo was a revelation, virtually no se's (rash, dry mouth) it seemed like heaven - I even enjoy my fortnightly visit to the nurses at UMMC for the infusion. And it worked; for a while. Now we proceed with the Nivo + radiation with the power turned up to 11 and see what happens.

Ed Brabant
Posts: 61
Joined: Apr 2013

3 1/2 years on Votrient. hair went white. 800mg never any less. About every 3-4 months I take 3-4 days off. For me its like my body resets to the medication. Do have muscle soreness. Nothing that I can't deal with. Last scan showed a bit of bowel inflamation. Stopped for a week per doctors order now everything is fine. I take Lamodal (sp) for the diarrhea. For me taking it first thing in the morning worked best. Was taking it at night. Less issues in the morning. I go thru appatite swings from wanting to eat everything to not hungry at all. Thats about the 3-4 month time frame and stopping for the 3 days or so takes care of that. Taking 5mg Lysonipril for BP issues. Was taking that before. Thyroid was screwy taking thyrozine for that. I go to MGH in Boston. I have access to all my test results on line. This October 18th is 5 years. Nov 2nd 5 years ago had my right Kidney removed. Went through 2 rounds of IL2. Don't remember the first round at all. 2nd Round almost killed me. Remember everthing. NIGHTMARE!!. But rather than a home run is was a wall ball double. Looked at the results when I started taking Votrient and compared the size measurements from then to now. They stuff in my lungs has shrunk by more than 1/2. 5 years ago I never would have thought that I would had survived this long. I feel great. Still do everything that I did before this journey started.  Seeing the doctor next Thursday. 

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

What a great report, Ed.  Thanks!  Very encouraging for us Votrient users.  Hope your doctor visit is good.

Kangaroorex
Posts: 45
Joined: Jul 2016

Excellent news!  Hope your visit goes well. 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

That's AWESOME! What a great report. We'll keep pulling buddy. You keep responding.

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