Votrient and Diarrhea: What Users Say

• Les...
• September 4, 2011

For Renal Cell Carcinoma "I have taken Votrient since 9/2010, starting at 800 mg per day, but reducing dosage to 400 mg then 200 mg due to high liver enzyme counts. I started taking Votrient after my kidney was removed due to RCC, in addition, I had three tumors in my legs, which is how I found out I had RCC. After taking Votrient and the kidney removal, two of the tumors disappeared. One year later and after taking the drug for one year, I had the third tumor removed by surgery, which was reduced in size by 50%. Today, my latest scans are showing no new cancer sites. Side effects have been minimal - diarrhea and change in taste with higher dosages, plus a stylish looking white hair! This medicine has allowed me to continue traveling and enjoy life without any limits."

• til...
• December 6, 2011

For Renal Cell Carcinoma "I have been on Votrient since Jan 2010. Started with a right kidney in 1999. In 2009 my family doctor suggested that I have a pulmonary doctor run some CTs to see what he thought. After 8 months of CTs, I had to go and get a biopsy and it proved 2 clear and 2 renal cell carcinoma had appeared between my lungs. I checked a couple of oncologists in town. Been on the medicine since January 2010 and have little significant change. A little diarrhea once in a while and headaches, some dizziness on occasion but no significant change. Feel real good about the treatment. Would recommend it to anyone."

• gen...
• Taken for 2 to 5 years
• March 31, 2015

For Renal Cell Carcinoma "I have been taking 800mg of Votrient daily since March 2012 to treat Renal Cell Carcinoma tumors, which developed when the cancer spread from a large tumor on my right kidney. Votrient has been effective in stopping the growth of the tumors and shrinking a few. Side effects experienced: treatable elevated blood pressure and diarrhea."

• Plp...
• Taken for 1 to 2 years
• March 21, 2017

For Renal Cell Carcinoma "I have been taking Votrient since Fall 2015. Bilateral Renal cell carcinoma. Left total nephrectomy and partial right. Small spot on liver at that time. Remaining tumors on the right. Due to surgery complications after right kidney surgery, sepsis, heart attack, and stroke. I am now 59 years old. Votrient 800 mg daily for about 5 weeks was rough...but I would do it again. Vomiting, diarrhea, high blood pressure, body tired all the time. My hair has turned white, most people like my highlights! My oncologist has been wonderful and I have responded well to lower doses of Votrient which has helped my side effects. September 2016 I received great news! I am cancer-free. Continue on maintenance dose right now of 200 mg 3x/wk."

• Dic...
• Taken for 1 to 6 months
• August 16, 2018

For Renal Cell Carcinoma "RCC detected May 2018. Left kidney removed 20 years ago, started Votrient 800 mg on June 1, 2018. First follow-up PET scan will be August 30th, to see how it is doing. Most side effects, diarrhea most days, hair turning white, bruising easily, now feet are very tender, even though I am following instructions on applying urea lotion on both feet and hands twice daily. Take the Votrient first thing out of bed in the AM, with hopes I flush out early enough to have an active life, although I am limited some days, but must always know where restrooms are. When I started the Votrient, I went directly to 800 mg, and have stayed on it daily since. I feel that I must tough it out, and stay with it, to give it the best chance to work. Praying for good scan results. God bless you folks that are in the same fight, stay on meds, stay as active as you can (I walk 20-30 minutes every day), and eat to keep weight up which will help with your strength. My prayers are with you."

• X_C...
• Taken for 1 to 6 months
• May 4, 2016

For Soft Tissue Sarcoma "After four failed chemo regimens, the doctors decided to try Votrient. The first week or two was the toughest. The worst side effect was the tumor pain, which was in my chest and back. Additionally, there was some fatigue, loss of appetite, and diarrhea. Three months later (now), I feel well, and there has been some slight shrinkage of my tumors. I'm also back in the gym. White hair kicked in within the first month. I'm a 22-year-old covered in white hair, lol."

• Ari...
• Taken for less than 1 month
• April 29, 2015

For Renal Cell Carcinoma "Diagnosed on Jan 2, 2015, with renal cell carcinoma. I'm 61 and have been a picture of health my whole life. The right kidney had a tumor that they were going to remove until they found 2 lesions on my liver. The first medication I did not respond to, and I have been on Votrient for 2 weeks. After 1 week, they felt I was responding. The side effects are bad, with vomiting and diarrhea that drain me. It's hard to eat, as food doesn't taste right, and now my tongue has a burnt taste, so nothing tastes good, and I have lost a lot of weight in a short period of time. I sleep 10-12 hours a night and take a 2-hour nap. They say this is all typical for everyone. How long has it taken everyone to finally get back to feeling normal? I use a walker around the house and a wheelchair for the doctor."

• jan...
• March 1, 2016

For Soft Tissue Sarcoma "I'm a 39-year-old guy from Sweden. I have soft tissue sarcoma in my stomach wall, and it spread to the bones (legs, both femoral head and sternum, and my skull that was removed). I have started Votrient 2015.08, 800 mg/day. The first 2 weeks, I had a fever and felt really sick, stomach problems, pain, and diarrhea. It took about 1-2 months before I felt normal with this medication. The pain from my bone mets disappeared pretty fast (1 month). I have had new scans after 3 months, and the results were pretty good, sternum and right leg had nothing left :) In the left leg, there is only about 30% left. I'm going to have new scans this month, so let's see, hoping for more good news.... The stomach tumor was the same."

• Gra...
• March 10, 2017

For Renal Cell Carcinoma "I am 70, female. 19 years ago, had the right kidney removed due to renal cell cancer. In the spring of 2016, my shoulder began to bother me, and it got worse until my upper arm broke just below the shoulder, due to renal cell cancer which had metastasized to my upper arm bone, my pancreas tail, and two spots on my liver. I first had two weeks of IL-2 which gave me awful side effects and no changes to the cancer tumors. Have been on Votrient since September 2015. November scan shows tumors shrinking. February 2017 shows tumors are still shrinking. Side effects are diarrhea every day, body and muscle pain, scaly sores on my bottom, fatigue, and just recently pain in my hands. I take 800 mg daily, late in the day. I take Tramadol for the body pain."

• Mea...
• Taken for 6 months to 1 year
• February 15, 2020

For Soft Tissue Sarcoma "I was on Votrient for 6 months at 600 mg a day. The diarrhea, fatigue, and cramping were so bad that I got off the treatment. While on it, my tumors and nodules were shrinking. I immediately felt better when I got off the treatment, so I golfed, rode my bike, and had a wonderful summer. After a summer being off Votrient, my doctor talked me into trying again at a lower dose. I started over at 200 mg for a month and felt good, so I increased to 400 mg a day. I started to feel fatigue and decided to stay at this dose. It's been 4 months now since I started over, and all tumors and nodules have shrunk considerably, and uptake on the PET scan is way lower. It seems to be working. Thinking now about going back to work if I could just get past the need for afternoon naps. I feel blessed. It could be so much worse. Glad I tried Votrient again at a lower dose."

• SSi...
• Taken for 1 to 2 years
• July 13, 2018

For Soft Tissue Sarcoma "This June I have completed 1 year with this tablet. I had started an 800 mg dose per day on 1st June 2017. The side effects I went through initially were diarrhea and mouth sores. I am still on these tablets. The sizes of the tumors are under control, and SUV uptakes have gone down. Fit and fine, no side effects now. It looks like the body has gotten adjusted to these tablets."

• Bik...
• Taken for 5 to 10 years
• August 23, 2020

For Renal Cell Carcinoma "I was diagnosed with stage IV RCC in October 2014. Had spread to adrenal gland, lungs, lymph nodes, and had attached itself to my bowel and vena cava. Had an attempted nephrectomy in December 2014 but failed. Kidney was embolized just after this. I started on 800 mg Pazopanib in January 2015 and have been on that dose ever since. My hair has gone white, I get fatigued easily, incredible diarrhea at times, and other minor side effects, but I have no discernible tumors now and am able to work, live life, and keep my fingers crossed that it keeps working. I know how incredibly fortunate I have been, and I am full of gratitude."

• Joh...
• Taken for 6 months to 1 year
• February 5, 2020

For Renal Cell Carcinoma "I was diagnosed with stage 4 RCC in December 2018. Began 800 mg Votrient in January 2019. In 6 weeks, my tumor had decreased in size by 40%, and lesions on my lungs had receded. At 11 weeks, my blood pressure went very high, and I ended up in the emergency room due to the high blood pressure. Dosage was decreased to 400 mg, and now at 12 months, I am stable. My hair is very white, and I have diarrhea many days, but I feel good and can work every day. I feel blessed to have been treated with Votrient. I hope you all can respond as well as I have to this immunotherapy. My prayers are with you all."

• Anonymous
• September 29, 2017

For Renal Cell Carcinoma "I have been on Votrient since April. Had to stop after 2 weeks because blood pressure put me in the hospital, being too high. Started taking it again at 1 a day. I am now up to 4 (800 mg) a day. Doing better the longer I take it. Have more good days where I feel like doing my housework. Food doesn't taste good. I can eat fruit: pineapple, grapes, cantaloupe, things like that. Even some Chinese food some days, like sweet and sour chicken. Chicken tastes best. No beef or pork tastes good. Took my second CT scan this week, waiting on results. The first one said it hadn't grown any, so that's a plus. I too have many side effects: diarrhea, the worst. Fatigue, taste issues, white hair everywhere, my hands are beginning to get very rough also. I have bruises come up too."

• meo...
• Taken for 1 to 6 months
• April 29, 2017

For Renal Cell Carcinoma "Left nephrectomy in July 2015 for a large renal cell tumor. First bad CT was in Nov 2016, which showed multiple lesions throughout the abdomen and pelvis. Biopsy in Dec 2016 confirmed recurrence of RCC. Started 800 mg Votrient in Jan 2017. Horrible side effects with fatigue and intense abdominal pain. Stopped after 3 weeks and took a week break before starting 600 mg. Side effects eased slightly, but blood work showed poor liver function after 3 weeks, so took a week break and started 400 mg. CT in March 2017 showed several lesions 10% smaller. Side effects have calmed down, with the worst being daily diarrhea and inconsistent appetite. ALL hair turned white. Good luck to everyone."

• Kat...
• Taken for 5 to 10 years
• December 15, 2020

For Soft Tissue Sarcoma "I'm taking Votrient for over 5 years, it stopped the spread of mets. Just before I started the trial, every scan like MR, CT, PET was showing new mets. I had clinical chemo like doxorubicin, ifosfamide, and it stopped only for a while. My oncologist was always suggesting Votrient, but it’s the 4th line treatment and expensive for the government (complicated to explain when health care is for “free” in my country). Anyway, for me, it was the last option. The regional CEO oncologist refused me the treatment. But my oncologist is a researcher and sent me to a capital hospital. So that since 18.9.2015, I’m on Votrient. First of all, I had no side effects, then, after half a year, I started having nausea, diarrhea, fatigue. And of course, my skin is as pale and cannot find the lightest foundation tone, and color my hair and henna brows and lashes..."

• Gra...
• Taken for 2 to 5 years
• June 10, 2019

For Renal Cell Carcinoma "Discovered renal cell carcinoma in right kidney and had it removed in 2013. In 2016, it metastasized to liver. Had radioactive isotopes placed in three tumors in liver. Started taking Votrient 800 mg, but couldn’t tolerate it, so was cut back to alternating 400 mg and 200 mg every other day. My tumors have shrunk and kept cancer at bay now for 3 years. I have terrible diarrhea, stomach pain, loss of taste and appetite, all white hair, dry heaves. However, I take it at night and am on the toilet half the night, but I wake up each day and thank the Lord for another day!"

• G-G...
• Taken for 6 months to 1 year
• July 1, 2017

For Renal Cell Carcinoma "Had a partial nephrectomy of the right kidney in 2005. The tumor was papillary renal cell. In Jan. 2016, the cancer reoccurred in several locations in the omentum. Surgery in June 2016 removed a portion of the frontal omentum including papillary renal cell tumors. Multiple nodules still remain in the omentum on both sides of my body. Have been taking 600 mg of Votrient since Nov. 2016, now 8 months. Shrinkage by as much as 50% has occurred in some tumors. None have increased in size during the period. Some initial side effects, hypertension, nausea, and weakness, have improved during the period; others, diarrhea, taste, and poor appetite, remain. At the age of 87, I am trying to stay active. Praying for improvements for all of us."

• Anonymous
• Taken for 1 to 6 months
• July 8, 2017

For Renal Cell Carcinoma "I'm a 66-year-old male. Had a radical nephrectomy of the left kidney in 2011. Scans showed a huge tumor. Six years later, had nonstop headaches for about 4 weeks. Scans showed a tumor on the cerebellum. Had surgery to remove that on May 10, 2016. That left me with palsy down my left side as the tumor and surgery damaged the 7th cranial nerve. Now I use a walker and wheelchair. Now a tumor has showed up in the stomach. Went on Votrient, effects were vomiting, diarrhea, all hair turned white, unable to get out of bed, loss of appetite, no taste. I started using cannabis oil, which helped alleviate nausea and loss of appetite. Last scans about two months ago, the tumor couldn't be seen. The oncologist didn't say it was gone, but it couldn't be seen, whereas the prior scan showed it clearly."

• Kid...
• Taken for 6 months to 1 year
• November 28, 2016

For Renal Cell Carcinoma "My husband was diagnosed with right renal cell cancer in May 2014. A brain tumor was found on an MRI that same month, along with small spots on the lungs. Gamma Knife procedure done in May 2014. Right nephrectomy in June 2014. Brain tumor removed in September 2014. He didn't start Votrient 800 mg until December 2015 due to a small spot they found on the left kidney during a routine CT scan. Since taking the medication, his hair has turned from red to white. Other side effects include high blood pressure, nausea, diarrhea, and being tired. He was on blood pressure medication prior to taking Votrient. Now he is on three blood pressure meds, and now the blood pressures are within a normal range. Spots may or may not be cancer. So far, tolerating the med well."

• Fai...
• Taken for 1 to 6 months
• April 4, 2019

For Renal Cell Carcinoma "Votrient nearly killed me by attacking my liver. I tried it twice. The first time was for 4 weeks. During that time, I had just about every side effect possible: change in taste, diarrhea, white hair, tiredness. I finally had brick red urine and turned yellow as it attacked my liver. I found out the side effects were so bad because a previous cancer drug, Opdivo, was still in my system. After 6 weeks of steroids, I tried Votrient again. This time, I got tired and had a fever within a week. A blood test showed it was attacking my liver once again. I was back on steroids. It did reduce the size of my tumors while on it, but was killing me by attacking my liver."

• Lee...
• Taken for 1 to 2 years
• June 11, 2020

For Renal Cell Carcinoma "January 2017, left kidney, adrenal, and 5 lymph nodes removed. 45 weeks into a trial, came back in T9 vertebrae cleaned out. January 2019, started 800 mg, bad side effects, went to 600. Now, 1 and 1/2 years, spot on left lung shrinking, right adrenal site reduced. Occasional diarrhea, white hair. Medical marijuana helps with appetite and nausea, sleeping, and anxiety. I will stay on until it stops working."

• meo...
• Taken for 6 months to 1 year
• August 4, 2017

For Renal Cell Carcinoma "Update: tolerating Votrient 400 mg. Last 2 scans, status quo. Diarrhea controlled with Imodium. Pattern of a couple good weeks followed by fatigue and general awful feeling. Medicinal marijuana has been a godsend for these bad times. Almost like setting a reset button, both mentally and physically. Only do it when I feel awful and won't be leaving the house."

• Cle...
• April 25, 2020

"I started on Votrient in mid-January for neuroendocrine tumor and have been on it for a little over 3 months at 600 mg a day. It was rough at first. Felt bad, upset stomach, diarrhea, mouth sore, food tasted bad, and all my hair turned white. Lost weight as well. My blood counts were not affected and only slightly raised my blood pressure. I have toyed with when I take the medicine to try to mitigate symptoms. A couple of times I've stopped for 4-5 days due to horrible diarrhea. It would clear up after 24-48 hours of stopping the medicine. My taste would return as well. After 3 months, I now take the medicine around 3 AM or when I wake up to use the restroom in the night, when my stomach is most empty. This made a huge improvement. I always take 2 Imodium before breakfast, 1 before lunch, and 1 before dinner. This leveled out the diarrhea. Other than my white hair, all other symptoms have mostly subsided and I am able to carry on as normal. CT scan coming up next month."

• Kiw...
• Taken for 5 to 10 years
• March 9, 2021

For Renal Cell Carcinoma "Using Votrient from Jan 2013 until July 2020. Had right kidney removed in Nov 2011 on diagnosis of my cancer. Metastasized in my submandibular and parotid glands in Sept 2012, starting Votrient in Jan 2013. Side effects appear to improve over the years, the main issue was blood pressure and diarrhea. I stopped Votrient to try SRT, which appears to be working."