Votrient Side Effects

KJones1969 said:

Votrient Side Effects Alice124
We are on day 12 of taking Votrient and the only side effect so far is he seems a little more tired. He says he isn't but I can tell by what time he is getting out of bed and going to bed at night. He has not had any of the other side effects we have heard about. We are being optimistic and praying nothing else happens even though the pharmacist told us 14 days before we know side effects.

Texas_wedge said:

Vitamix
Another good move you've made. I make myself smoothies on a daily basis and there's no doubt I ingest even more fruit than I did previously and also have a larger fluid intake, despite trying to substitute a glass of a smoothie for a mug of espresso several times each day! It's a great way of guaranteeing constantly getting plenty of anti-angiogenic fruits and vegetables.

Bennette said:

Votrient Side Effects
Incase you are still wondering, my mother has been taking Votrient for 3 weeks now and seems to be doing fine on it. We only had one morning of nausea before we started her on anti-nausea meds and she has been fine since - but that was on day 2 of the Votrient, so I am not sure if it caused it or not. Also, they had her on other things for appetite before she started Votrient, because she stopped eating after her kidney surgery. So those things might cover up any appetite side effects. So far we have not had to increase her high BP meds, which was the doctor's biggest concern with Votrient, she is still taking the same dose and we check her BP a couple times a day to make sure it isn't skyrocketing.
Hope this helps.

Bennette

alice124 said:

Votrient / Marinol
Thank you Bennette for the feedback, and I'm glad your mom is having none of the ill effects that we all worry about. Your mom's experience on Votrient so far pretty much is identical to John's experience. Let's keep our fingers crossed for them both.

One thing I've learned from dealing with Cancer is I have for most of my life undervalued a good laugh. Given that they come less frequently these days, I'm learning to enjoy them while I can. So--since you mention appetite stimulants for your mom, let me share with you a story I recently experienced relating to John (my husband). Maybe they have two drugs in common.

About a month ago with John's weight decreasing and my concern increasing over it, I encouraged John to call his oncologist and ask about an appetite stimulant, which he did. The Dr. called in a prescription to a local pharmacy and John went to pick up quickly thereafter. Once there, the trouble started. They couldn't find prescription; then they didn't have the prescription; then they were going to order prescription; only to come back and say "yes they have it. But is in the refrigeration compartment." Needless to say he was a little ticked off at the long, avoidable wait.

Later that day, he called me from one of our favorite restaurants where he was joining a few friends for lunch. I answered the phone to his voice saying, "Al, there's something wrong. I think I'm having some kind of side effect from the appetite stimulant." I immediately asked if he had gotten the prescription warning/side effect page with the prescription. He said he hadn't as they were anxious to get him out of there due to all the confusion with the prescription.

So I asked him what the name of the prescription was and I quickly googled, a bit frantic as he told me he had gone completely blank, lost total track of conversation, trouble with speech, etc.

As my google screen brought results, I felt a bit of relief. The prescription name was Marinol. I told John, "you're stoned." Marinol is synthetic Marijuana.

I can laugh about it now since he recovered and immediately stopped taking it. Personally, I thought he should continue taking it, but he very much disliked the LOST sense of control.

Bennette said:

Marinol
Alice,

Yes, my they put my mom on Marinol, but she is on the lowest dose 2.5mg and only started with it once a day at bedtime and then 5 days later they told me to give it to her 3 times a day, but did not increase the individual dose, she is still on the lowest per capsule. It is a pain that it has to be refrigerated, but ever since she started taking it 3 times a day she has been eating GREAT. She eats a whole meal for breakfast, lunch and dinner; plus snacks in between and her weight has been stable for two weeks. She hasn't complained of feeling "high" or anything, but she was/is on steriods too - I think they actually help balance each other out. I have heard that some people on steriods can barely sleep a full hour at a time, she doesn't have that problem and she can sit and read a book for quite a while before being compelled to move around. So for her it worked great. I was so distressed before because I couldn't get her to eat more than a bite or two for each meal after her surgery and she lost over 20 lbs in 2 1/2 weeks. So for her I consider it a miracle drug, she is eating like a normal human being now!

If he still needs an appetite stimulant, maybe you should check into the dosage they were starting him off on, maybe it was too much for him? I am pretty inexperienced with this stuff, but learning fast!

Bennette

alice124 said:

Marinol
This is one of many reasons this Board is so valuable. His reaction made me question Marinol's legitimacy, but your response absolutely confirms it does what it's supposed to do for most people. I'm going to go home now and check to see what dose he was on???

20 pounds in 2 1/2 weeks is a lot of weight to lose. You're doing such a great job with your mom; keep up the good work.
___________________________
P.S. Even though John's reaction to Marinol was NOT one he liked or continued, we've had a lot of laughs about his being stoned. You'd have to know him to appreciate his response. He is pretty straight laced (but incredibly funny), and to hear him talk about distorted visions and other oddities--AFTER THE FACT--is funny. My stepson called John during his reaction and then immediately called me to say his father was incoherent. That is so NOT John. But like I said, we have fun laughing about it now.

Bennette said:

Marinol
We had plenty of fun joking about it too. You have to find something in all these meds, treatments, etc to laugh about or it gets way to serious all the time. I didn't think about this before, but pain meds make my mom goofy and confused. Since she is taking them for her spine mets, we probably won't have noticed any additional confusion! We already know she is thinking straight all the time! But sometimes, with everything happening so fast, I think it is better for her to be a little out of it - we take care of all the thinking for her until we can get into a better state and off some of the meds.

alice124 said:

Marinol
Just wanted to let you know I did check John's dosage of the Marinol and it's .5. I read him your note about your mom's usage, and I think he may give it a second try at the lower dosage. It's good to compare notes.

KJones1969 said:

Day 24 of Votrient
Thank you for all of the feedback on the side effects or lack thereof of Votrient. My husband is at day 24 and his blood pressure is as close to normal or better than before he started it. Now they did up his bp medicine a few weeks earlier since Votrient usually makes it go up. The only side effect still so far has been tiredness. We were told it could turn his hair white, well it is getting grayer/whiter than before but not sure if it is the Votrient, age or me asking him all of the time if he is okay.

We go back to Duke Friday for a 4 week check up with blood work and to see Dr. Harrison. Last visit his protein was high so hopefully it has gone down some. If this appointment is good we will start going every 4 weeks with the first scans since Votrient at 3 months so praying for great results.

He has a great will power and will to live so praying this helps him.