Cramping with votrient

Sslee723

Everyday seems to being something different with votrient .  Being on it for a little over a month.   I've been experiencing cramping followed by diarrhea, sorry to be so forward with this. Is that a normal side effect?  It seems to happen every other day.  Also my gums feel very sore. My moods are very irrational, I feel like I am all alone at times because I have a big family who I know understand but sometimes I feel like they do not get how serious this is.  Maybe it's just me, maybe it's all in my head, I just don't know .  I see my oncologist in a few days.  I don't want to sound like an idiot.  I just feel like crap all the time, and I know that's all part of it but I feel like no one understands how I feel.  I'm sorry for the rant but this forum has been a very big help to me since I found it, I'm just looking for answers or ideas.  Thank you all for listening .

foxhd

Is it getting fun yet?

On good days maybe I had diarrhea only a couple times. Sometimes as many as 10 times. Cramps, nausea, mouth sores. You can't just settle for the diarrhea. Have all the fun or why bother? I suggest that you inform the doc. Keep your history complete. These complaints are so normal that if your dr. isn't familiar with them , he isn't very experienced. I had to accept never going anywhere. I had to stay near the throne. So I made doing yard work, painting, and such my focus. Finishing projects became my therapy. Both physical and emotional. BTW, I've never been able to explain to others about always feeling like crap. I try to accept it and as long as I stay engaged with activity and interests, I have learned that I do fine. I'm not the man I used to be, but it is a big world. There is a lot to occupy your thoughts and body. Give yourself time. Positive thinking and being a spin doctor has to become a way of life. Try to live by making the choice.

The other thing I will suggest is that if votrient is working, you have to stick to it as long as possible. Despite SE's. But, a big but, will be getting your doctor to be flexible about dose and freq. For me votrient worked for a year. A miserable year but it kept me alive. If I knew then what I have learned about dosing with cabo now, maybe I could have still gotten a year of benefit at much lower dosage and maybe tolerance would have been good. This seems to be a very touchy area with most doctors.

Steve.Adam

Family

Hi SsLee,

When my mother was sick with metastatic melanoma I didn't know how to act around her. I should probably have just asked her. What I did was to keep everything as normal as possible. It was not denial. It was more like avoiding being over dramatic, if you know what I mean.

You can always tell people here exactly how you are feeling. That is why we come here.

Steve.

Dutch1

I've been on Votrient for a

I've been on Votrient for a year.  I've had many of your side effects.  Fox talks about asking your doctor about the amount you're taking.  I've been successful at a lower dose.  While the side effects are still there, they aren't as strong as what they'd be at a full dose.  Cutting back might be a possibility.  Also, frequent bloodwork is something that I've gotten used to so as to monitor negative impact on other organs. 

Family doesn't always know how to react.  If you're looking sort of normal, they may think that this cancer thing is behind you.  They may not understand that cancer is always a factor in your life.  Some family and friends will really step up with their support and some will fall away and disappoint.  Relish those who are there to support.

Dutch

Sslee723

foxhd said:

Is it getting fun yet?

On good days maybe I had diarrhea only a couple times. Sometimes as many as 10 times. Cramps, nausea, mouth sores. You can't just settle for the diarrhea. Have all the fun or why bother? I suggest that you inform the doc. Keep your history complete. These complaints are so normal that if your dr. isn't familiar with them , he isn't very experienced. I had to accept never going anywhere. I had to stay near the throne. So I made doing yard work, painting, and such my focus. Finishing projects became my therapy. Both physical and emotional. BTW, I've never been able to explain to others about always feeling like crap. I try to accept it and as long as I stay engaged with activity and interests, I have learned that I do fine. I'm not the man I used to be, but it is a big world. There is a lot to occupy your thoughts and body. Give yourself time. Positive thinking and being a spin doctor has to become a way of life. Try to live by making the choice.

The other thing I will suggest is that if votrient is working, you have to stick to it as long as possible. Despite SE's. But, a big but, will be getting your doctor to be flexible about dose and freq. For me votrient worked for a year. A miserable year but it kept me alive. If I knew then what I have learned about dosing with cabo now, maybe I could have still gotten a year of benefit at much lower dosage and maybe tolerance would have been good. This seems to be a very touchy area with most doctors.

How long were you on votrient

How long were you on votrient?  When did the diarrhea get really bad, right away?  I'm thinking about going back to work but I'm afraid it's gonna get Bad. Just curious.  

foxhd

Sslee723 said:

How long were you on votrient

How long were you on votrient?  When did the diarrhea get really bad, right away?  I'm thinking about going back to work but I'm afraid it's gonna get Bad. Just curious.  

I was on votrient

for 1 year. Summer '15 to summer ' 16. I was sick when I started and sick when I finished it. Constipation from opiates to diarrhea from votrient. I'll say it again, if it is working You've got to deal with whatever happens until you get first follow up scans. Then try to reduce dosage until se's are managable.

Sslee723

foxhd said:

I was on votrient

for 1 year. Summer '15 to summer ' 16. I was sick when I started and sick when I finished it. Constipation from opiates to diarrhea from votrient. I'll say it again, if it is working You've got to deal with whatever happens until you get first follow up scans. Then try to reduce dosage until se's are managable.

I'm kind of nervous, when

I'm kind of nervous, when this all began I was having horrible pain in my right side, which led to removal of right kidney due to a large tumor that had traveled into my inferior vena cava and attached itself to my small bowel.  Anyway scans and scans and stage 4 later, I have now been having the same kind of pain on my left side the past 2 weeks, I thought it could've been cramping from votrient but I don't know, it's the same pain.  I'm kind of scared, I'm going to ask doctor to do a scan or X-ray tomorrow because it's my regular visit.  I'm hoping it's all in my mind but I literally just had a dejavu.  Just venting I hope what I'm thinking is just gas or votrient cramping.

Sslee723

foxhd said:

I was on votrient

for 1 year. Summer '15 to summer ' 16. I was sick when I started and sick when I finished it. Constipation from opiates to diarrhea from votrient. I'll say it again, if it is working You've got to deal with whatever happens until you get first follow up scans. Then try to reduce dosage until se's are managable.

Hey foxed I went to dr today

went to dr today and demanded a Ct scan because of the pain in my left abdominal area.  He did chest pelvis and abdomen and they didn't see anything new, thank goodness!!! He did tell me to stop votrient for one week and continue next Monday taking 600 mg.  He thinks the cramping was from the votrient.  He was extremely happy that I was doing as well as I was with it.  Does that sound ok, I feel like a lab rat.  

rhominator

Sslee723 said:

Hey foxed I went to dr today

went to dr today and demanded a Ct scan because of the pain in my left abdominal area.  He did chest pelvis and abdomen and they didn't see anything new, thank goodness!!! He did tell me to stop votrient for one week and continue next Monday taking 600 mg.  He thinks the cramping was from the votrient.  He was extremely happy that I was doing as well as I was with it.  Does that sound ok, I feel like a lab rat.  

Sounds about right

Good for you. It looks like you're off to a good relationship with your oncologist.  I hope the lower dose works for you.  It certainly made my side effects better when I went down from 800mg.

todd121

Side Effects - Family and Friends

I haven't had votrient, so can't speak to it. I was on a clinical trial my first year and had a bunch of side effects. This was the first year after my kidney was removed. After my second year I found out I had a tumor in my adrenal gland and so they unmasked me from the trial and I found out I was on a placebo the first year. To this day I don't know what caused my symptoms that first year. Probably will never know. It could have been the adrenal tumor, the body adjusting to missing a kidney, or it could have been anxiety. I know one thing, the mind is very powerful and worry and anxiety are really bad for you. It doesn't help to say try not to add to your problem with worry and anxiety, but it's still the truth. It's easier said than done.

If you can't let go of the worry and anxiety, at least take really good care of yourself. Get rest. Exercise. Relax with a warm bath or listen to music. Try to get into an activity that you can do that will keep your mind engaged and off the subject of cancer.

Managing your own expectations of family and friends is going to be key to not being disappointed. They aren't going to understand what you're going through. It's really not possible. Find people that can. We can. People can be very unpredictable in their response. I know it's hard to think about, but it can be hard on them too. Their reactions very well may not be what you want it to be. My youngest son reacted with anger and hasn't talked to me most of the last 4 years since I got sick and before that there was really no clue that he'd react that way. His reaction is so far from the way I wanted him to react that almost daily I'm shocked by it. I've had to let it go. I've even had to come to the realization that it's hard for him and maybe this is how he's protecting himself from the hurt of losing me. Or maybe it's something else. Like so many things, it's not up to me.

Maybe look for a cancer patient's or cancer survivor support group? I found some in my area. It helped. I also found a therapist near my house (covered on my insurance) and even asked for and got prescriptions to anti-anxiety/anti-depressants. I'm not fond of those drugs, but I tried them and I think they helped.

Make a list of your side effects and discuss solutions with your doctor and your doctor's nurse. You may have to take something or do something to minimize them. This is on your list of more stuff you have to do to take good care of yourself.

Hope something here helps.

Best wishes,

Todd

Ed Brabant

Votrient

I was on Votrient for 4 ½ years. 800 mg a day. Hair turned white. Had diarrhea took lamotil and the really helped a lot. I also had pains in my stomach. I was prescribed an antacid. That did the trick. And also anti-nausea medication. I also had a thyroid issue. Whichever one makes you tired. Over active I think. Was given medication for that too. After about 3-4 months the side effects would start to get the best of me. The doctor said to stop for a week. When I did that it was almost like my body would do a reset. My wife could hear it in my voice when I was due for a week off. I had great results with Votrient. Over 50% shrinkage. Hope you have similar results. But for me it stopped working. Now I am on a clinical trial. See how that goes. I would crfamp up as well. But for me taking calcium pills reall helped me alot. Sounds weird but taht did it.