Votrient drug

Hornahappy
Hornahappy Member Posts: 3

Votrient, a relatively new drug,  was prescribed for me following   surgery for sarcoma of the  thigh and subsequent surgery of the lungs to remove sarcoma that spread to the lungs. I had  adverse side effects from Votrient and am interested in communicating with anyone who  has taken Votirent. It is administered in tablet form.   Hornahappy 

Comments

  • waynep
    waynep Member Posts: 1
    Votrient

    I've been taking it for about 3 weeks now and haven't really noticed much in the way of side effects.

    I take 4 tablets first thing in the morning with warm water then go back to bed for an hour before having breakfast.  Once or twice I've felt a little bit of stomach discomfort right after taking the tablets, but climbing back into bed and having a good sized breakfast an hour later takes care of that.

    I do feel a bit more tired since starting votrient and have noticed my hair that is just starting to grow back after my previous chemo is white in colour.  My last blood test shows that my liver counts are being impacted but not drastically.  My blood pressure has been altered, but again not drastically and my pulse feels a bit different but that could also be caused by the different chemo's I've been on in the past which are hard on the heart.

    With chemo I'd typically feel bad shortly after having it but then have several weeks to recover and gradually get back to my old self again... just in time for the next round.  With Votrient the effects are much less but constant each day.

    Its too bad you've been having bad side effects from this drug, but its often the case that you either get none of the side effects or all of them.

    Best of luck.

     

  • Hornahappy
    Hornahappy Member Posts: 3
    waynep said:

    Votrient

    I've been taking it for about 3 weeks now and haven't really noticed much in the way of side effects.

    I take 4 tablets first thing in the morning with warm water then go back to bed for an hour before having breakfast.  Once or twice I've felt a little bit of stomach discomfort right after taking the tablets, but climbing back into bed and having a good sized breakfast an hour later takes care of that.

    I do feel a bit more tired since starting votrient and have noticed my hair that is just starting to grow back after my previous chemo is white in colour.  My last blood test shows that my liver counts are being impacted but not drastically.  My blood pressure has been altered, but again not drastically and my pulse feels a bit different but that could also be caused by the different chemo's I've been on in the past which are hard on the heart.

    With chemo I'd typically feel bad shortly after having it but then have several weeks to recover and gradually get back to my old self again... just in time for the next round.  With Votrient the effects are much less but constant each day.

    Its too bad you've been having bad side effects from this drug, but its often the case that you either get none of the side effects or all of them.

    Best of luck.

     

    Votrient

    My doctor is toying with the idea of putting me back on votrient. I started around Jan 1, 2013 (two tablets daily)  but experienced serious side effects in the form of high blood pressure, blood in urine and muscle soreness.  I stopped the votrient after three weeks and the   side effects disappeared. Then I restarted votrient (two tablets) , and the side effects  promptly re-appeared, so I had to stop taking the votrient, whereupon the side effects disappeared. All of that was in January and Feb. 2013.   My February scans were good. I am getting  my regular  follow up scans in a week---at which time I plan to revisit the  possibility of re-starting votrient--maybe starting with one tablet. I am extremely axious to be able to take votrient as it is the only available  target type treatment  for my type of  stage 4 sarcoma.  Hopefully your side effects are continuing to be manageable, and I would be interested in knowing if votrient is accomplishing its purpose and that your scans remain good. Thank you for your response.

  • ultracyclist
    ultracyclist Member Posts: 2

    Votrient

    My doctor is toying with the idea of putting me back on votrient. I started around Jan 1, 2013 (two tablets daily)  but experienced serious side effects in the form of high blood pressure, blood in urine and muscle soreness.  I stopped the votrient after three weeks and the   side effects disappeared. Then I restarted votrient (two tablets) , and the side effects  promptly re-appeared, so I had to stop taking the votrient, whereupon the side effects disappeared. All of that was in January and Feb. 2013.   My February scans were good. I am getting  my regular  follow up scans in a week---at which time I plan to revisit the  possibility of re-starting votrient--maybe starting with one tablet. I am extremely axious to be able to take votrient as it is the only available  target type treatment  for my type of  stage 4 sarcoma.  Hopefully your side effects are continuing to be manageable, and I would be interested in knowing if votrient is accomplishing its purpose and that your scans remain good. Thank you for your response.

    Votrient side-effects

    My wife has LMS/STS since 1998. She recently discovered that the cancer is atypical (growth rate of 3-5%)which is one of the main reasons she is still alive.  She started taking Votrient 4/1/13. She started on 2 pills a day and this week increased the doseage to 3 pills. She is having side-effects: Weakness, muscle soreness, tumor pain, diahrea, tiredness, heart-burn, and adominal pain.

  • yannischmad
    yannischmad Member Posts: 1
    Votrient Side Effects

    My husband was diagnosed with Synovial Sarcoma in the brachial plexus two years ago.  After chemo, radiation and amputation, his sarcoma metastisized in his lungs.  He was put on Votrient about six weeks ago.  His blood pressure immediately shot up, but with additional medication it is now absolutely fine.  He's not having diarrhea...probably because he's on pain narcotics.  He is having a very, very difficult time with fatigue.  He has no energy and wants to sleep all the time.  This is very discouraging to him.  I'm wondering if a reduction in dosage might reduce the fatigue, but I'm not sure they'll change the dosage until they know if it's effective.  His first scan will be in about six weeks, so we don't know if it's doing any good yet.  Has anyone else had debilitating fatigue from Votrient?

  • lmcraig
    lmcraig Member Posts: 7

    Votrient Side Effects

    My husband was diagnosed with Synovial Sarcoma in the brachial plexus two years ago.  After chemo, radiation and amputation, his sarcoma metastisized in his lungs.  He was put on Votrient about six weeks ago.  His blood pressure immediately shot up, but with additional medication it is now absolutely fine.  He's not having diarrhea...probably because he's on pain narcotics.  He is having a very, very difficult time with fatigue.  He has no energy and wants to sleep all the time.  This is very discouraging to him.  I'm wondering if a reduction in dosage might reduce the fatigue, but I'm not sure they'll change the dosage until they know if it's effective.  His first scan will be in about six weeks, so we don't know if it's doing any good yet.  Has anyone else had debilitating fatigue from Votrient?

    votreint side effects

    My mom also has sarcoma with lung mets (all available literature shows her stage and type - MFH- with extremely poor prognoses). Chemo put her in remission and she has been on votrient for maintenance since February. Her BP like your husbands went through the roof and over the last two weeks she has had late symptoms of fatigue and nausea. I am not sure though if she is just trying to physically do too much in summertime heat and humidity (she is a gardener) or if votrient side effects can show up much later. 

    Good news is her last scan at end of May shows a dramatic reduction of ALL lung mets.  They will follow one very small target lesion which is less than 1cm (the largest) to monitor progression.

    Hope this helps. Not sure what your onc will do about your husbands fatigue, but good luck with his scan.

  • kphelps12
    kphelps12 Member Posts: 3
    Votrient

    I have been on 800mg Votrient for almost a year. I started with STS in my abdomen then mets to lung and liver. I had surgery to remove mass in lung but inoperable in lung. Side effects have been minimal with my biggest complaint being stomach cramps and diarrhea.  This is usually controlled with Imodium. My scans have shown no change with no growth but no shrinkage either. 

  • mpd0353
    mpd0353 Member Posts: 8
    Votrient

    My husband has been fighting MPNST for almost 5 years now. He is maxed out on radiation and traditional chemotherapy. He has had surgery in the past to remove lung mets but they came back within 3 months. Has been on traditional chemotherapy for about a year now and he is no longer tolerating it and it doesn't seem to be working anymore anyway. We go back to Boston this month and the next step is Votrient. I have been reading a lot about Votrient and the possible side effects. What I would like to learn more about is if it has been working for people to keep their lung mets stable or even some shrinking. I would also like to hear from people about how long they have been on Votrient and when it stopped working, if it never started working, and even better how long it has actually continued to work. I can't find any statistics on if the drug works how long it will continue to work for most people. Also he takes 70 mg twice a day of blood thinner and I am wondering if there is anyone else taking Votrient who has had DVT is the past and is on blood thinners and how that works with taking Votrient. 

     

    Thank you to anyone who can give me more insight.

  • suzanne611
    suzanne611 Member Posts: 4
    mpd0353 said:

    Votrient

    My husband has been fighting MPNST for almost 5 years now. He is maxed out on radiation and traditional chemotherapy. He has had surgery in the past to remove lung mets but they came back within 3 months. Has been on traditional chemotherapy for about a year now and he is no longer tolerating it and it doesn't seem to be working anymore anyway. We go back to Boston this month and the next step is Votrient. I have been reading a lot about Votrient and the possible side effects. What I would like to learn more about is if it has been working for people to keep their lung mets stable or even some shrinking. I would also like to hear from people about how long they have been on Votrient and when it stopped working, if it never started working, and even better how long it has actually continued to work. I can't find any statistics on if the drug works how long it will continue to work for most people. Also he takes 70 mg twice a day of blood thinner and I am wondering if there is anyone else taking Votrient who has had DVT is the past and is on blood thinners and how that works with taking Votrient. 

     

    Thank you to anyone who can give me more insight.

    votrient

    I had a thrombus which i am on coumadin therapy.  I have recently (around 4 weeks) been placed on Votrient and did notice that my INR has been fluctuating along with elevated LFTs.  The main side effect I have encountered is the diarrhea but it is intermittant. 

     

  • mpd0353
    mpd0353 Member Posts: 8

    votrient

    I had a thrombus which i am on coumadin therapy.  I have recently (around 4 weeks) been placed on Votrient and did notice that my INR has been fluctuating along with elevated LFTs.  The main side effect I have encountered is the diarrhea but it is intermittant. 

     

    Votrient

    Hi Suzanne611. Thank you for your response. My husband had DVT and has been on blood thinners for a couple years now. It wasn't the cancer that almost took him but the amount of blood clots he had all within his body. The only thing that saved him was the IVF filter the surgeon put in him after his prior surgery. He no longer has the IVF filter because they said sarcoma and long term placement of the filters can cause the clots. It is well controlled at this point. I hope the Votrient doesn't mess with what is already controlled. My husband took his first 4 pills tonight (Votrient) and I am really anxious. I have always been a little anxious with each new treatment but this time more so. I think because he is fragile. More fragile then when he has ever started a chemo treatment. Very thin. Cannot afford to lose 1 single pound of his frame. Still he has an amazing fighting spirit. Our biggest concern is the HBP issue everyone keeps talking about. I decided to run to CVS tomorrow and buy a monitor and check his BP twice a day. The unknown is always scary. I pray though that this is what we have been looking for. Clearly not the cure but if we can get him stabalized and keep his side effects managable and get some enjoyment out of every day... Who could ask for more?? 

     

    I hope you are continueing to do well. Can you please post an update as to your progress on Votrient and once you get your scans update on the results? Best of luck to you!!