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Votrient

Sslee723
Sslee723 Member Posts: 54

I have to start taking 800 mg of votrient this week when it gets delivered. I have been out of work on disability since January having had my kidney removed because I had stage 3 cancer.  Should I wait to see if I have any side effects before returning to work. I was a healthy 49 year old until this was found by accident in december.  Very confused , stressed out about everything , just looking for anyone else's experiences.  Thank you for listening.

Comments

  • Steve.Adam
    Steve.Adam Member Posts: 463
    edited March 2017 #2
    Hi sslee

    I don't have the knowledge to answer your question, but other people here will read and respond.

    I am very sorry to hear about your situation. I have had a nephrectomy but the cancer was stage 1 so I have no experience with Votrient etc.

    Steve.

  • Hd67xlch
    Hd67xlch Member Posts: 151
    Where else has the cancer spread to............

    Im guessing it must have metastasized somewhere else if they are wanting to start you on votrient, if so is more surgery possible to remove it? Just my opinion but id stay away from all cancer meds if you can have any remaining cancer removed via surgery. I cant answer your question about going back to work on Votrient Ive never been on any cancer meds, but there are lots of folks here who can answer your question. Good luck.

  • Dutch1
    Dutch1 Member Posts: 152
    Votrient

    I've been on Votrient for over a year.  You should be flexible as to how you play the situation.  Different people react differently to the drug.  Don't be surprised if your oncologist wants you in for frequent blood work so as to judge whether your body can take the amount of the drug that you'll be taking.  It wouldn't be unusual if you had to reduce the amount of the drug because of some adverse effects that it has on you.  Especially at the start, be in very close contact with the oncologist.  The drug is sure to have some side effects on you.  It'll turn your hair white, for one thing.  It may slow you down with body aches and joint pains.  It often messes up your digestive system such that frequent trips to the bathroom become necessary.  I am retired, so I don't have to think about returning to work.  But, if I was, I'd want to have some flexibility as to how I got back into a work routine.  Start out slowly.  Reduced hours for a while until you feel that you can step it up.  You may well find that you can't tackle your job like you used to.  Be patient and give yourself enough time to figure out what your body is capable of while undergoing the Votrient treatment.  Most importantly, be sure that you get frequent follow up from the oncologist.  For me, it was bi-weekly blood work and even weekly blood work when my results showed problems.  My experience is that Votrient (as most any cancer drug) will be a drag on your lifestyle, whether work or personal.  That's the price many of us pay while undergoing chemotherapy -- our life patterns have to change and that often means compromises.  I hope that the Votrient impact which you experience is mild.  Be watchful.

    Dutch

  • Sslee723
    Sslee723 Member Posts: 54
    edited March 2017 #5
    Dutch1 said:

    Votrient

    I've been on Votrient for over a year.  You should be flexible as to how you play the situation.  Different people react differently to the drug.  Don't be surprised if your oncologist wants you in for frequent blood work so as to judge whether your body can take the amount of the drug that you'll be taking.  It wouldn't be unusual if you had to reduce the amount of the drug because of some adverse effects that it has on you.  Especially at the start, be in very close contact with the oncologist.  The drug is sure to have some side effects on you.  It'll turn your hair white, for one thing.  It may slow you down with body aches and joint pains.  It often messes up your digestive system such that frequent trips to the bathroom become necessary.  I am retired, so I don't have to think about returning to work.  But, if I was, I'd want to have some flexibility as to how I got back into a work routine.  Start out slowly.  Reduced hours for a while until you feel that you can step it up.  You may well find that you can't tackle your job like you used to.  Be patient and give yourself enough time to figure out what your body is capable of while undergoing the Votrient treatment.  Most importantly, be sure that you get frequent follow up from the oncologist.  For me, it was bi-weekly blood work and even weekly blood work when my results showed problems.  My experience is that Votrient (as most any cancer drug) will be a drag on your lifestyle, whether work or personal.  That's the price many of us pay while undergoing chemotherapy -- our life patterns have to change and that often means compromises.  I hope that the Votrient impact which you experience is mild.  Be watchful.

    Dutch

    Thank you so much for your

    Thank you so much for your advice.  I ended up going to hospital today because of bad abdominal pain.  I had catscan with and without contrast.  It showed the nodules that I already knew about on my lungs, but now it was showing metastatic lesions and enlarged lymph nodes.  My mind is going in a million directions, going to see my oncologist and my surgeon tomorrow in manhattan.  Hoping I can get some answers.  This whole thing has been really crazy!!! Thank you for listening.

  • rhominator
    rhominator Member Posts: 233
    You mileage may vary

    I was on Votrient for ~3 years. I started at 800mg; reduced the dosage when scans were NED; increased the dosage when nodes showed up; and quit the drug when it stopped working (3 months ago).  My side effects were white hair, diarrhea, weakness, fatigue, cold, leg cramps and altered taste.  About a year into the treatment I loathed the drug but I eventually learned to accept it.  Except the weakness and fatigue: it just wasn't me. My oncologist called it "bio-chemical deconditioning".

    The side effects have subsided since I've been off the drug.

    Last weekend, against my doctor's wishes, I took my big adventure motorcycle off-roading.  I felt GREAT!!  Following a rutted creekbed, I dropped the bike (twice) when the front tire went one way and the bike went another.  I had no problem picking up the ~500 pound bike.  There's NO WAY I could pick that bike up three months ago.  I was so encouraged that I was feeling "normal" again.

    I tell you this to let you know that the drug doesn't really change who you are.  The effects are temporary.  It just burdens or hobbles you while you're on it. 

  • marosa
    marosa Member Posts: 333
    edited March 2017 #7
    Sale, Im very sorry you are going thru this

    I have no experience with the drug having had just the nephrectomy.  Just wanting to say I wish the Votrient works well on the disease and easy on you.  

  • tracylev
    tracylev Member Posts: 17
    edited March 2017 #8
    I'm so sorry you are going

    I'm so sorry you are going through this. I just stopped taking  Votrient about 2 months ago as it stopped working for me. Its terrific that Rhominator was able to use it for 3 years. It only worked about 7 months for me. I had some side effects. My hair turned white, all hair, eyelashes, body hair. I had some other side effects like mouth sores, blisters on my hands and feet. The mouth sores went away after awhile And the blisters eased after awhile too.  The very worst side effect was diarrhea. I was able to cope with these side effects and work with some restrictions. I did not have nausea and was able to eat fine. The most common side effect I've heard from others is diarrhea. 

    Im so sorry about your trip to the hospital. I hope so much the Votrient will work for you. I would recommend you take more time off of work.  I'm thinking of you. You are not alone with this. I know what you are going through.

    Tracy

  • Sslee723
    Sslee723 Member Posts: 54
    edited March 2017 #9
    tracylev said:

    I'm so sorry you are going

    I'm so sorry you are going through this. I just stopped taking  Votrient about 2 months ago as it stopped working for me. Its terrific that Rhominator was able to use it for 3 years. It only worked about 7 months for me. I had some side effects. My hair turned white, all hair, eyelashes, body hair. I had some other side effects like mouth sores, blisters on my hands and feet. The mouth sores went away after awhile And the blisters eased after awhile too.  The very worst side effect was diarrhea. I was able to cope with these side effects and work with some restrictions. I did not have nausea and was able to eat fine. The most common side effect I've heard from others is diarrhea. 

    Im so sorry about your trip to the hospital. I hope so much the Votrient will work for you. I would recommend you take more time off of work.  I'm thinking of you. You are not alone with this. I know what you are going through.

    Tracy

    Thank you so much for your

    Thank you so much for your reply.  I am so scared of everything that is going on right now.  Starting it probably tomorrow has me freaked out.  I just turned 50 like 2 weeks ago,  I feel like I've aged so much over the past coupl of months.  I was so looking forward to  getting back to work where I am a manager in a very face paced retail chain.  I did see my urologist yesterday and his Suggestion was to take more time off because I do not know what side effects I will get. Anyway thank you, take care 

  • foxhd
    foxhd Member Posts: 3,181
    edited March 2017 #10
    I took it

    for a year. It halted a rapid progression and saved my life. I was very sick the whole time. I hated every minute and cheered when it failed. however rule number 1 is stick with what works until failure.

  • Sslee723
    Sslee723 Member Posts: 54
    foxhd said:

    I took it

    for a year. It halted a rapid progression and saved my life. I was very sick the whole time. I hated every minute and cheered when it failed. however rule number 1 is stick with what works until failure.

    Side effects

    what side effects did you get while on votrient.  What is rapid progression?  I'm still learning about this so I'm sorry if it's a stupid question. Very stressed out and any info that I can get will help me. 

  • Abunai
    Abunai Member Posts: 173
    edited March 2017 #12

    I am lucky enough to have a job at a great place that allows me to telecommute.

    I, too, started on 800 mg per day of Votrient, but had to step down to 600 mg per day because of the side effects. For me, those side effects were joint pain and severe exhaustion. I had more medical issues, such as a spinal cord injury caused a met on my spine. I had surgery and radiation therapy to kill off that met but only regained about 50% mobility in my legs.

    My oncologist said that it's rare for patients to remain at 800 mg. Ultimately, your doctor is your best guide to answer all of your questions, but I'd wait for a month or so before deciding whether or not you can tolerate working while on votrient.

    Best of luck.

  • foxhd
    foxhd Member Posts: 3,181
    my se's

    constantly nauseas. I'd vomit with any exertion. Diarrhea 3-10x/day. Lost lots of weight. lost hearing in my left ear. All food lost all flavor. I tell of deciding to eat a big juicy, garlicy, spicey dill pickle to startle my taste buds. I bit into it and it was less exciting than if I bit into a raw potato. The only thing with flavor was taco hot sauce. I went from 800 t0 400 within a short time. Now I wonder if I should have taken even less.

  • tracylev
    tracylev Member Posts: 17
    edited March 2017 #14
    Sslee723 said:

    Thank you so much for your

    Thank you so much for your reply.  I am so scared of everything that is going on right now.  Starting it probably tomorrow has me freaked out.  I just turned 50 like 2 weeks ago,  I feel like I've aged so much over the past coupl of months.  I was so looking forward to  getting back to work where I am a manager in a very face paced retail chain.  I did see my urologist yesterday and his Suggestion was to take more time off because I do not know what side effects I will get. Anyway thank you, take care 

    How're you doing?

    Hi Sslee, how's it going? You'be been taking the Votrient for a few days. Maybe no side effects yet. I think the first side effect I felt was a pins and needles feeling, tingling in my hands and feet. Not painful just weird. Everyone experiences it differently. Some people have very little side effects or very manageable ones. You are young and strong, hopefully you will handle it well.  All in all, I handled it pretty well and I was able to go back to work with some restriction. Hopefully you'll be able to go back to work too.

    Thinking of you, 

    Tracy

  • Sslee723
    Sslee723 Member Posts: 54
    tracylev said:

    How're you doing?

    Hi Sslee, how's it going? You'be been taking the Votrient for a few days. Maybe no side effects yet. I think the first side effect I felt was a pins and needles feeling, tingling in my hands and feet. Not painful just weird. Everyone experiences it differently. Some people have very little side effects or very manageable ones. You are young and strong, hopefully you will handle it well.  All in all, I handled it pretty well and I was able to go back to work with some restriction. Hopefully you'll be able to go back to work too.

    Thinking of you, 

    Tracy

    Well it's day 3, still no

    Well it's day 3, still no side effects ,  doctor told me to hold off work for A while longer.  I'll keep you posted on the side effects , got my fingers crossed sure could use a little luck.   Thank you

  • Bellafelice
    Bellafelice Member Posts: 57
    edited March 2017 #16
    Votrient newbie

    Hi SSlee23-My hubby just started 800 mg last Sunday night as he had mets in his spinal column found recently (he had  a neprectomy about 8 years ago and no mets for a long time).

    I can tell you I was fearful and full of dread about the possible side effects. I know it is extremely early to know the full side effects that may kick in for Bob. However so far, all he has experienced is some diarrhea (controlled by taking Immodium about once daily) and his blood pressure is elevated (he had high BP to begin with and is taking more BP medication to control that).

    Good ideas I read that helped others alot  with side effects are : eating about 6 small meals throughout the day; no greasy or fried foods; take the Votrient after NOT eating for two hours and right BEFORE you go to be (that helps with  nausea being kept at bay because you are asleep; and taking a swig of Mylanta (gotten over the counter at any drug store) at the first sign of stomach upset. In terms of ideas for simple quick meals, I got a bunch of small sugar free apple sauce containers to take to work, some natural peanut butter; some crackers; some no sugar rice pudding and tapioca. Another person on the Smart Patient Board (a fantastic site by the way) in Renal cancer recommended that if the diarrhea is bad, just eat cottage cheese, and apple sauce for 2 days-she recommended it as helping her husband a great deal. She also recommended eating some plain Greek yogurt dally and getting a good probiotic to keep the stomach flora healthy.

    I have to credit Foxhd and Dutch 1  who have been so incredibly helpful and supportive of me in as I dont know what I would have done without their help-and the help of the other people on here and at Smart Patients.

    Please write back anytime if I can be of any futher help-I am more than glad to keep you updated on how Bob is doing with the Votrient.

    WIshing you all the best in days to come-and all the least in side effects.