VOTRIENT

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  • Southern Gent
    Southern Gent Member Posts: 2

    How long did you take Votrient/ and crying.

    How long were you on Votrient?  I was on 800 mg/day and it tore me up.  Now the Dr. put me on 400 mg/day.  Did your hair come out?  Also, did anybody cry every time they had to have an MRI or CT with contrast?  I am an RN and I cry like a baby.  I don't know your rules, just trying to manage.

     

    Thanks,

    Bettie

    Votrient

    I have been on Votrient since July 2010. It does work. Tests have been good since then. Side effects are as discussed. My Onc starte me om iron pills recently and stopped the diarehia in its tracks. Wish I did that a longtime ago. A whole different quality of life without worring about the bathroom.

  • ivfour
    ivfour Member Posts: 49

    Good morning relda.  In

    Good morning relda.  In October 2012 my husband was diagnosed with Stage 4 Papillary Renal Cell Carcinoma, unknown primary origin.  He has been on 800mg of Votrient since December 2012.  He seems to be tolerating it pretty well.  All his hair has changed from dark brown to pure white ( I have pics in Expressions), and he is having some skin issues on his face (flaking, redness/splotchiness).  He also goes through spells where something is either too salty or feels "weird" in his mouth.  When that happens I switch around his diet so that I either do a completely sodium free diet if he's in a salty phase, or I make sure there are lots of crunchy things if he's in a phase where things feel soft and mushy etc.  So far all his blood work has come back good so the Votrient is playing nice with his liver, kidneys etc.  Our main concern is that for some reason the past 6 months or so he has started gaining weight (mostly in his stomach) and we are unsure why, his diet is healthier than ever and he's honestly not eating a whole lot.  I keep a record of what he eats, how much etc to keep track and show his dr at every visit.   So his Oncologist sends him for scans every 3 months but so far there is no indication of why he is gaining weight.  He has also developed blood clots in both lungs, but they aren't sure why.  It could either be from the Votrient or it could be a secondary cancer starting.  Not many actual answers so I know it's confusing. 

    Continuing on Votrient

    I haven't posted in awhile but I had to change oncologists and he did abdominal and chest CAT scans there months part and they are still great with no evidence of mets.  He feels that the teo spots and an area of theickening are still cancer but the votrient is keeping them from growing since there was shrinkage from them when compared to original scans.  His plan is for me to stay on votrient indefinitelu unless liver enzymes or other side effects prevent it.  So far I have been lucky and liver enzymes have been stable or decreased by reducing my rheumatoid arthritis medication methotrexate,  I guess I will have my white hair longer and th occasional GI upset which is managed with phenergan.  I was just wondering if anyone Else has taken votrient indefinitely.  I have been on votrient 400mg since July 2011 with occassional breaks due to elevated liver enzymes.  He now has me doing every six month scans and having my labs followed up by oncologist and rheumatologist every here months.  I continue to feel very blessed with the results. Thanks again for the suppodt this board has been even though I don't post. Rey often.

  • BDS
    BDS Member Posts: 172
    ivfour said:

    Continuing on Votrient

    I haven't posted in awhile but I had to change oncologists and he did abdominal and chest CAT scans there months part and they are still great with no evidence of mets.  He feels that the teo spots and an area of theickening are still cancer but the votrient is keeping them from growing since there was shrinkage from them when compared to original scans.  His plan is for me to stay on votrient indefinitelu unless liver enzymes or other side effects prevent it.  So far I have been lucky and liver enzymes have been stable or decreased by reducing my rheumatoid arthritis medication methotrexate,  I guess I will have my white hair longer and th occasional GI upset which is managed with phenergan.  I was just wondering if anyone Else has taken votrient indefinitely.  I have been on votrient 400mg since July 2011 with occassional breaks due to elevated liver enzymes.  He now has me doing every six month scans and having my labs followed up by oncologist and rheumatologist every here months.  I continue to feel very blessed with the results. Thanks again for the suppodt this board has been even though I don't post. Rey often.

    Votrient since July 28, 2012

     

    IVfour, long time no hear. How the hell you doing these days? I have been on Votrient since July 28, 2012. So far Votrient has either shrunk my metastasis or has kept them stable. My next scan is on Feb 14th for which I am hoping for continued good results.  So far so good - Votrient has kept the RCC monster at bay. As my oncologist says “You are on this drug forever or until it stops working”.  - BDS

     

  • one putt
    one putt Member Posts: 72
    ivfour said:

    Continuing on Votrient

    I haven't posted in awhile but I had to change oncologists and he did abdominal and chest CAT scans there months part and they are still great with no evidence of mets.  He feels that the teo spots and an area of theickening are still cancer but the votrient is keeping them from growing since there was shrinkage from them when compared to original scans.  His plan is for me to stay on votrient indefinitelu unless liver enzymes or other side effects prevent it.  So far I have been lucky and liver enzymes have been stable or decreased by reducing my rheumatoid arthritis medication methotrexate,  I guess I will have my white hair longer and th occasional GI upset which is managed with phenergan.  I was just wondering if anyone Else has taken votrient indefinitely.  I have been on votrient 400mg since July 2011 with occassional breaks due to elevated liver enzymes.  He now has me doing every six month scans and having my labs followed up by oncologist and rheumatologist every here months.  I continue to feel very blessed with the results. Thanks again for the suppodt this board has been even though I don't post. Rey often.

    more votrient

    I have been in a trial with nivolumab/votrient since May 12,2012.  All of my liver functions are currently well within normal ranges. I'm guessing 45 years of thoroughly enjoing "adult beveridges" has made my liver think it's on vacation with this votrient. I've only missed 1 week  of 800 mg/day and that was due to a lung issue. Let's hope it keeps working for us for a long time.

  • ivfour
    ivfour Member Posts: 49
    Votrient and remission

    Sorry I have t posted much but doing great!  I retired from the state and now work part time as needed for a hospice.  I live getting to be a nurse and helping families carry out their loved one's last wishes.  It is an honor to be part of their lives during this difficult time. Glad you and others are having success with  votrient.  My husband also retired so we plan on riding our Harleys more than ever.  Feeling very blessed.

  • ifmiller
    ifmiller Member Posts: 1
    edited September 2017 #27
    votrient side effects

    My wife has clear cell RCC, had her right kidney removed & after 15 months of watching & waiting, now has mets in her lung & liver.  She started votrient 2 weeks ago & has side effects - fatigue & nausea.  She gets her next scans in about 3 weeks.  Do the side effects get better with time, or is she likely to have them until the drug dose is reduced?

  • larry54
    larry54 Member Posts: 14
    edited September 2017 #28
    ifmiller said:

    votrient side effects

    My wife has clear cell RCC, had her right kidney removed & after 15 months of watching & waiting, now has mets in her lung & liver.  She started votrient 2 weeks ago & has side effects - fatigue & nausea.  She gets her next scans in about 3 weeks.  Do the side effects get better with time, or is she likely to have them until the drug dose is reduced?

    Did anyone reply?

     

    Hi Mr Miller

     

    I see you posed this earlier this month.  I spotted it while looking for some people who have had some experience with long term use.

     

    I have been on Votirent now for about four or five months.  I am one of the lucky ones.  Thus far my side effects are not that serious.  I am on the full 800 mg per day.  My side effects are diarrhea (which the opiates help mitigate), high blood pressure and fatigue.  I take meds for the blood pressure.  The fatigue can sometimes be overwhelming causing me to be in bed for a full day.  I am usually OK by the next day, but if not stop taking it for two days as instructed by my doctor.  Recently during hurricane Irma I cut my dosage in half for four days because I could not afford to be extremely exhausted while preparing for and riding out such a bad storm.

     

  • Tezman
    Tezman Member Posts: 1
    ifmiller said:

    votrient side effects

    My wife has clear cell RCC, had her right kidney removed & after 15 months of watching & waiting, now has mets in her lung & liver.  She started votrient 2 weeks ago & has side effects - fatigue & nausea.  She gets her next scans in about 3 weeks.  Do the side effects get better with time, or is she likely to have them until the drug dose is reduced?

    Votrient

    I have been on Votrient since June 2012.  At first I suffered all of the side-effects mentioned in the drug information, diarrhea, fatigue, whitenenin of skin and hair,etc.  I have been able to improve on the effects by changing my diet.  I am gluten, dairy and I in my case tomato free(acid was the problem). Making this change improved my quality of life tremendously.  Today the only major problems I have are fatigue and easily sun burning without protection and in the case of contamination from my diet restrictions severse gastro problems!  Currently I CT scans every 6 months.  My RCC has been generally stable! Nothing worse, nothing better since my original diagnosis of January 2012. 

     

  • Happy1956
    Happy1956 Member Posts: 1
    Votrient

    Just started votrient last Thursday had to go off it for 3 days for i went into hypertensive engency. Now blood pressure under control due to being put on medication. Will probley be starting back on it hopefully this all works for me.  Kidney cancer that has gone to the lung.  Prayers for all of u.   Vickie 

  • love_of_my_life
    love_of_my_life Member Posts: 77
    Happy1956 said:

    Votrient

    Just started votrient last Thursday had to go off it for 3 days for i went into hypertensive engency. Now blood pressure under control due to being put on medication. Will probley be starting back on it hopefully this all works for me.  Kidney cancer that has gone to the lung.  Prayers for all of u.   Vickie 

    Hope it gets better for you. 

    Hope it gets better for you.  You are in our prayers.

  • HLee
    HLee Member Posts: 13
    Votrient

    I have been on votrient since December 12, 2017.  Thus far my ct scans are clean.  Fatigue is a big issue.  Nausea, appetite, and diarrhea are a bit of an issue.  I have lost 50 pounds during this time.  Concerned that my oncologist is saying i will remain on treatments about 4 more years.