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When do the Votrient side effects start?

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

I saw my Oncologist on Friday for my first visit since starting Votrient approximately 2.5 weeks ago.  I would like to ask others who are on Votrient when their side effects started?  My Oncologist was surprised that I have not experienced anything yet, however, I have read it can take up to 18 weeks before they start.

Also, does anyone know about the absorption of Votrient?  I have read it is soluble in a PH of up to 4.  Based on this, I assume absorption happens in the stomach rather than small intestine?  I was also surprised to read that up to 60-70% of the dose is not absorbed at all but excreted as waste?  That seems odd considering the price of the drug.

Debbie

MattInVa
Posts: 50
Joined: Sep 2015

 

Debbie,

It took about a month for much in the way to show up. For me it came on more gradually. My first white hairs was in my beard, I noticed after shaving my whiskers where blonde then white.

Then about a month ago I had a round of ichiness on my hands for no apparant reason, but that subsided. I also had a bit of bloody sinus that drained at night causing a bit of bloody phlem in the moring but that also has subsided.

What is your dose 800mg? that seems to be the standard staring out.

I started getting more tired and a bit of nausea around 6-8 weeks,loose stool on occasion. 

They should monitor your BP and bloodwork ever 2 or three weeks. Mine BP has been around 120/70 and norman enzyme levels.

I had my frst scan  weeks after and had a reduction in my 2 largest nodules and the remainder unchanged

There is a debate on morning or evening. I don't think it effects the effectiveness, just when the side effects come on. I take mine in the morning and usually fell lousy until 10 or 11 am, after that I am usually right as rain. I fear losing a good night sleep more than feeling bad for a few hours.

The dirstions say to take on an empty stomach 3 or 4 hours after eating and nothing for an hour after, I assume this is for best absorption.

 

Matt

 

BDS's picture
BDS
Posts: 172
Joined: Aug 2012







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I was on Votrient for almost 2 ½ years, for me the noticeable side effects started  after one month -  high blood pressure, diarrhea, hair turning Santa Clause white, change in taste and weight loss. I lost 25 pounds on Votrient, I went from 192 to 167 but mainly hovered around 170-173. I would have to "borrow" my college age sons clothes. I could eat as much and anything I wanted and I would not gain a pound. I still find it funny as hell, here I am I have stage 4 RCC and everybody including complete strangers would tell me how "good" I look. Go figure?  

Since January 2014 I have been enrolled in a clinical trial (ClinicialTrials.Gov – NCT02178722) with Keytruda (Pembrolizumab) along with INCB24360. It’s now been almost a year since I entered the trial; I have now gained back all the weight back that I lost on Votrient. - BDS        

mrou50
Posts: 389
Joined: Mar 2013

I was on Votrient for about three weeks at 800mgs before I started getting hit hard by the side effects diarea, white hair, taste changes in food, extreme high blook pressure (which I never had before), it put me in the hospital twice, itchy hands, shortness of breath, and feeling tired all the time.  Now I am at 400mgs and the experience has been better.

 

Mark

nyisles's picture
nyisles
Posts: 30
Joined: Mar 2013

Votirent affects people in all different ways. I started to get side effects about 2 weeks in. Started on 400mg for 2 weeks, then did 600mg for 4 weeks, then had to go back to 400mg because the 600mg hit me so hard I could not get out of bed. My doc told me the Votrient absorption varies from person to person. That is why they start low and build up to see how your body processes the meds. My limit was 600mg and went back to 400mg which still are bothersome but I can actually function a bit better. Have most of the side effects listed on the packet of info they give you: high blood pressure (which is fixed by blood pressure meds), change in taste, loss of appetitte, weight loss (I lost 50 lbs in 3 months), upset stomach, nausea, diarrhea, fatigue, white hair (I look like Billy Idol from the 80's), change in voice, and bloody nose. Good news is that my last scan showed that everything was shrinking even on the short time being on the meds. Next scan in 2 weeks so I hope for similar results.

Time2luv
Posts: 49
Joined: Dec 2009

I've been on Votrient since May 2015. Started out at 800 mg but after just a week BP was high and sick at stomach.  Changed to 400mg and been good since. Monitor BP often and I'm on BP meds. Take in morning. Don't feel well for a few hours with occasional vomiting but not often. Very tired all the time. Taste buds severely damaged so I have to make myself eat. Lost 25 lbs in 9 months but needed to loose some weight. Dr not worried as I loose only about 2.5 lbs a month. My hair is totally white now. My nails grow pretty fast. Have loose bowels about once a week but have not had full blown diarrhea. Lucky I guess. However when I am loose I can literally say I have a HOT butt as it burns! Guess that is due to the med. Had scan last week and get results in 2 days. Previous scan showed shrinkage in some nodules and no growth in others and no new ones. Dr said when Votrient stops working he will put me on Botiva. Thanks for everyone's honest and to the point info on here. It has helped me a lot.

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

I was so ill when I started votrient, I was almost comatose. Off 800mg after 4-6 weeks, to 400mg. I needed a wheelchair to visit my doctor. Still down a good 40#. Diarrhea had remained severe enough that I haven't left the house much this past year. That really sucked. Constant upset belly. Now at day 6 without votrient, I feel soooooo good. SE's seem gone. We are all so different. Nivo was like getting infusions with normal saline for me, yet others get significant SE's. I was prepared to remain on votrient as long as it worked regardless of the SE's. Now that I'm off it, I am as happy as a clam. Whatevver the hell that means.

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

I am now going into week 7 on 800 mg daily Votrient.  I have a bit of fatigue, usually starting around 3 in the afternoon, but it is manageable.  Loose bowels maybe once a week and muscle cramps in my legs, calves, and feet.  Unfortunately, I have gained about 10 pounds - quite the opposite of others' who have experienced food aversion and weight loss.  I told my husband that I am probably one of the very few cancer patients who eat more while on treatment.  I do have hypothyroidism and will be asking the Oncologist to do a thyroid test as I may need to change my thyroid medication dosage.  My every other week blood tests continue to be normal, however, the last test showed a slight elevation in the Lactase DH.  

Debbie

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