Starting Votrient this week

Suekub
Suekub Member Posts: 137
in Kidney Cancer #1

After so many investigations and procedures I finally get to start drug treatment. MRI done this past Saturday shows L1  lesion a little reduced in size with no spinal cord encroachment and oncologist is happy for me to go ahead with drug treatment just wants to chat with both spinal surgeon and radiation oncologist to confirm results. Further CT scan and nuclear bone scan for comparison also needed but this will not delay commencement.

I know we are all different and not likely to have the same reaction to medication but wanted any advice from Votrient users about what I may expect and how long after taking the drug before any side effects and suggestions in dealing with them gladly accepted. The list of side effects in the printed document is quite scary!

Wishme luck and here's hoping for  minimal side effects.

 

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Comments

  • MDCinSC
    MDCinSC Member Posts: 574
    #2
    Bon Chance!

    I wish you only the best and most positive results!

    Take no prisoners!

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #3
    Votrient - expectations

    Sue, I hope that 2013 will prove to be as good a year as 2011 was a terrible one for you.  Good luck with the Votrient - a very good choice and this is looking like a vintage year for it, according to so many terrific reports of success from patients who've been on it for a few months or more.

    You've obviously not done a search on this forum, or you wouldn't need to ask for info about it!  Just a little way down the threads list, you'll see one of our two giant threads - Votrient Side Effects.  There's certainly enough there to give you a very fast start!!!

    Over on Smart Patients, I have a major project on, in which I'm collating feedback from many members there who are on Votrient, with particular reference to the effects of different dose levels, breaks in treatment and side-effects. Once you've got your teeth into the topic, you might want to join in over there as well, for a lot more info.   I'll be happy to answer questions you may have once you've done a little orientation on the forums with all the accumulated wisdom they can give you.  

    Votrient acts fairly quickly so you'll be monitored frequently initially - probably weekly - to check on your liver enzymes levels and your blood pressure so that your docs can tweak the administration as necessary.   Good luck.

  • GSRon
    GSRon Member Posts: 1,303 Member
    #4
    Hi Sue..!  OK, that list you

    Hi Sue..!  OK, that list you read is scarey.. but as you said we are all different.. some people have few if any side effects some have more of them.  Yes, read some of the more in depth info from the Votrient Posings. So what can you expect..?  Blood pressure issues, white hair (yes everywhere), fatigue, sensitive skin, and sometimes Liver issues.  OK, so I need to mention nausea, but for me it was minor and happened near the end of the first week and never returned..  Fatigue can be a biggie if you are a working person, for me, I work all week and sleep most of the weekends.

    So, I suggest a Cardio Doc for the blood pressure, make sure that Doc KNOWS about Votrient.  Get a home BP tester a good one, not just a cheap one (mine records the data for play back later).  Skin issues, use sunblock if you go out in the sun..   Get some good skin cream for sensitive areas if needed. The hair, forget about it... 

    Liver issues.. that is a biggie as you will not likely know until the blood test results are in.  This also depends on the dosage, 800 MG being max, and 200 being min. 

    Overall (for me) the Votrient is pretty easy, and the good news is that it did what it is supposed to do..  but due to Liver issues I am on a hiatus.. hope to re-start soon.

    Good Luck.!

    Ron

  • BLKJAK
    BLKJAK Member Posts: 108
    #5
    Welcome to the Votrient club!

    First, I really want to wish you well on Votrient. It has had some really great results with some of the folks here. I had my first 3 month CT scan last week and all of my tumors have shrunk a bit. I'm happy as any tumor shrinkage is a good thing.

    I'd like to add to GSRon's post and mention diarrhea. Oh the damn diarrhea. I didn't have any issues with it until the first week of July. It's pretty bad, but can be managed with Immodium or as GSRon suggested and I confirmed, the generic varient. Be extremely careful if you experience flatulence if you catch my drift. The bottle says you can take no more than 4 per day, but my oncologist said I could take 8 safely. You may want to see what your doc says. I hope you aren't affected by this.

    Lately the fatigue has been pretty bad for me. I have to force myself to get out of bed or I'll sleep at day. It's Votrient added to all the other drugs I take which cause fatigue (Oxycontin, Oxycodone, BP meds and antidepressant and antianxiety meds). It's probably the worst side effect I have. If I could, I would sleep all week, day and night.

    I hope this bit of information helps you out. Like Texas_Wedge said, there's a huge topic which covers this in greater depth. This are just the cliffs notes.

    BLKJAK

     

  • GSRon
    GSRon Member Posts: 1,303 Member
    #6
    BLKJAK said:

    Welcome to the Votrient club!

    First, I really want to wish you well on Votrient. It has had some really great results with some of the folks here. I had my first 3 month CT scan last week and all of my tumors have shrunk a bit. I'm happy as any tumor shrinkage is a good thing.

    I'd like to add to GSRon's post and mention diarrhea. Oh the damn diarrhea. I didn't have any issues with it until the first week of July. It's pretty bad, but can be managed with Immodium or as GSRon suggested and I confirmed, the generic varient. Be extremely careful if you experience flatulence if you catch my drift. The bottle says you can take no more than 4 per day, but my oncologist said I could take 8 safely. You may want to see what your doc says. I hope you aren't affected by this.

    Lately the fatigue has been pretty bad for me. I have to force myself to get out of bed or I'll sleep at day. It's Votrient added to all the other drugs I take which cause fatigue (Oxycontin, Oxycodone, BP meds and antidepressant and antianxiety meds). It's probably the worst side effect I have. If I could, I would sleep all week, day and night.

    I hope this bit of information helps you out. Like Texas_Wedge said, there's a huge topic which covers this in greater depth. This are just the cliffs notes.

    BLKJAK

     

    Oh Dear

    Thanks BLKJAK... how could I forget the diarhea..?  That tells you what 2 weeks off of the drugs can do..!!   And yes no getting around it.. passing gas will NOT likely be the same... you will likely pass a lot more than just gas..!!   I am so glad that no one else has to do my laundry....

    Hope if works for you too..!

    Ron

  • Suekub
    Suekub Member Posts: 137
    #7
    GSRon said:

    Oh Dear

    Thanks BLKJAK... how could I forget the diarhea..?  That tells you what 2 weeks off of the drugs can do..!!   And yes no getting around it.. passing gas will NOT likely be the same... you will likely pass a lot more than just gas..!!   I am so glad that no one else has to do my laundry....

    Hope if works for you too..!

    Ron

    Thanks

    Thanks guys for your replies.

    I have started to read the many threads re side effects. Happily my blood results have always been relatively normal apart for slightly raised GGT levels which the doctor does not seem to be concerned about. Further blood taken yesterday. My creatinine levels have continued to be very good since nephrectomy 2 years ago.

    I had a period of 12 months where I was taking sorafenib  whilst involved in the SORCE trial and experienced loss of hair (which has grown back curly after a lifetime of dead straight hair and looks like I can look forward to having curly white hair - reminds me of my grandmother!) diarrhoea, foot pain, slight fatigue, raised BP and loss of appetite. Appears many similar side effects as Votrient.

    I will keep touching base here after I start the drug.

    Best wishes to everyone.

     

  • saintmont
    saintmont Member Posts: 63
    #8
    Votrient side effect

    Hi, I started votrient 5 months ago, started on 800 down to 600 due diarrea havent not had any problems since. I take gastro stop if i occassionly have diarrea and that stops it. Sometime the diarrea will come if i eat certain foods. I work full-time have not had issue with tireness but I make sure I do get my 8 hours rest. I had scans last week and saw my oncolgist today everything is stable.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #9
    saintmont said:

    Votrient side effect

    Hi, I started votrient 5 months ago, started on 800 down to 600 due diarrea havent not had any problems since. I take gastro stop if i occassionly have diarrea and that stops it. Sometime the diarrea will come if i eat certain foods. I work full-time have not had issue with tireness but I make sure I do get my 8 hours rest. I had scans last week and saw my oncolgist today everything is stable.

    Liver enzymes

    Have you encountered any problems with hepatotoxicity, like, for instance, Ron and myself?  We have both been forced into breaks from Votrient treatment by our liver enzymes going wild.  If you have any record of your labs results and could give info on tests like ALT, ALP, bilirubins etc I'd love to see those figures.

  • Suekub
    Suekub Member Posts: 137
    #10
    Texas_wedge said:

    Liver enzymes

    Have you encountered any problems with hepatotoxicity, like, for instance, Ron and myself?  We have both been forced into breaks from Votrient treatment by our liver enzymes going wild.  If you have any record of your labs results and could give info on tests like ALT, ALP, bilirubins etc I'd love to see those figures.

    3 doses in

    After 3 days my BP has spiked and my medication has not made a difference. Luckily a phone call to the hospital today (Sunday here in Aus) found my oncologist doing rounds who advised to miss tonight's dose and she will discuss with other renal specialists tomorrow to review BP medication. Otherwise I feel OK.

    let's hope they can get the hypertension sorted so Votrient can do it's job.

    hope everyone is keeping well and having a relaxing weekend.

     

  • saintmont
    saintmont Member Posts: 63
    #11
    Texas_wedge said:

    Liver enzymes

    Have you encountered any problems with hepatotoxicity, like, for instance, Ron and myself?  We have both been forced into breaks from Votrient treatment by our liver enzymes going wild.  If you have any record of your labs results and could give info on tests like ALT, ALP, bilirubins etc I'd love to see those figures.

    Votrient side effect

    Hi, my bloods were good, My creatinine was slighly up and urea was slighly up. the other results were fine. My BP is starting to get under control. I will have a look at my blood test time. 

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #12
    saintmont said:

    Votrient side effect

    Hi, my bloods were good, My creatinine was slighly up and urea was slighly up. the other results were fine. My BP is starting to get under control. I will have a look at my blood test time. 

    Votrient sides

    saintmont, glad to hear you're doing well. Do you have any actual figures you can quote, for ALT, bilirubins etc,  for purposes of rough comparison?  We're all so different but some ball-park guidance is often helpful in knowing what to look out for.

  • Suekub
    Suekub Member Posts: 137
    #13
    Suekub said:

    3 doses in

    After 3 days my BP has spiked and my medication has not made a difference. Luckily a phone call to the hospital today (Sunday here in Aus) found my oncologist doing rounds who advised to miss tonight's dose and she will discuss with other renal specialists tomorrow to review BP medication. Otherwise I feel OK.

    let's hope they can get the hypertension sorted so Votrient can do it's job.

    hope everyone is keeping well and having a relaxing weekend.

     

    A week in......

    Oncologist has added a further BP drug after discussing with cardiologist which seems to have done the trick.. No other SE's yet but have noticed I seem to be incredibly tired - having a shower this morning was hard work! First lot of blood tests tomorrow.

  • MDCinSC
    MDCinSC Member Posts: 574
    #14
    Suekub said:

    A week in......

    Oncologist has added a further BP drug after discussing with cardiologist which seems to have done the trick.. No other SE's yet but have noticed I seem to be incredibly tired - having a shower this morning was hard work! First lot of blood tests tomorrow.

    Good to hear you are back on

    Good to hear you are back on track.  I hope your imminent spring brings all sorts of good things into your life!

    Thanks for the updates!  Keep kicking it in the rear!

    Michael

  • Suekub
    Suekub Member Posts: 137
    #15
    Texas_wedge said:

    Votrient sides

    saintmont, glad to hear you're doing well. Do you have any actual figures you can quote, for ALT, bilirubins etc,  for purposes of rough comparison?  We're all so different but some ball-park guidance is often helpful in knowing what to look out for.

    Blood results

    I have had to stop Votrient due raised liver enzymes, creatinine was also raised which is a first. Anyway more bloods done today with a view to re-starting Votrient at a reduced dose (I started on full 800mg). Stay tuned!

    Sue

     

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #16
    Suekub said:

    Blood results

    I have had to stop Votrient due raised liver enzymes, creatinine was also raised which is a first. Anyway more bloods done today with a view to re-starting Votrient at a reduced dose (I started on full 800mg). Stay tuned!

    Sue

     

    Votrient break

    As you'd guess, Sue, I'll be following your fortunes closely.  What were the numbers that caused them to take you off for now? 

    I've reduced my dose from 600 to 400 and will inform my Onc at an extra appointment she's asked me to go to on Friday.  I'll have my weekly tests tomorrow and will have the latest analysis before I see her on Friday.  I must say I'm more than usually apprehensive about  what we're going to learn at that appoimtment!!

  • GSRon
    GSRon Member Posts: 1,303 Member
    #17
    Texas_wedge said:

    Votrient break

    As you'd guess, Sue, I'll be following your fortunes closely.  What were the numbers that caused them to take you off for now? 

    I've reduced my dose from 600 to 400 and will inform my Onc at an extra appointment she's asked me to go to on Friday.  I'll have my weekly tests tomorrow and will have the latest analysis before I see her on Friday.  I must say I'm more than usually apprehensive about  what we're going to learn at that appoimtment!!

    Hi Sue..!  I am beginning to

    Hi Sue..!  I am beginning to think that perhaps Onc's should start people out at 600 MG and not the 800..  but then I am no doctor.  My liver enzymes were good at 600.  And the great news is that the Votriet did have good succes in a short period of time.. well about 5 months.  Hang in there and kick Cancer butt... (Yes in the end, my Liver Bilirubin got me of Votrient, but..).

    Ron

  • Suekub
    Suekub Member Posts: 137
    #18
    Texas_wedge said:

    Votrient break

    As you'd guess, Sue, I'll be following your fortunes closely.  What were the numbers that caused them to take you off for now? 

    I've reduced my dose from 600 to 400 and will inform my Onc at an extra appointment she's asked me to go to on Friday.  I'll have my weekly tests tomorrow and will have the latest analysis before I see her on Friday.  I must say I'm more than usually apprehensive about  what we're going to learn at that appoimtment!!

    I was given a copy of the pathology today - ALP 140 U/L. GGT 78 U/L interestingly my GGT levels are always above normal but I am not a drinker! Creatinine 98 umol\L don't yet have results of test done yesterday.

  • Suekub
    Suekub Member Posts: 137
    #19
    GSRon said:

    Hi Sue..!  I am beginning to

    Hi Sue..!  I am beginning to think that perhaps Onc's should start people out at 600 MG and not the 800..  but then I am no doctor.  My liver enzymes were good at 600.  And the great news is that the Votriet did have good succes in a short period of time.. well about 5 months.  Hang in there and kick Cancer butt... (Yes in the end, my Liver Bilirubin got me of Votrient, but..).

    Ron

    Hi Ron, thanks

    For your reply. Let's hope just a hiccup and can get started again soon. can I ask if you had any problem with your tongue? Mine feels like it has been burnt - taste buds are not doing their job and quite painful. 

  • GSRon
    GSRon Member Posts: 1,303 Member
    #20
    Suekub said:

    Hi Ron, thanks

    For your reply. Let's hope just a hiccup and can get started again soon. can I ask if you had any problem with your tongue? Mine feels like it has been burnt - taste buds are not doing their job and quite painful. 

    Hi Sue... no tongue issues..

    Hi Sue... no tongue issues.. mostly fatigue, diarrhea, and slight blood pressure issues..  Hope the big V works for you..!

    Ron

  • Eskimo lily
    Eskimo lily Member Posts: 43
    #21
    Suekub said:

    I was given a copy of the pathology today - ALP 140 U/L. GGT 78 U/L interestingly my GGT levels are always above normal but I am not a drinker! Creatinine 98 umol\L don't yet have results of test done yesterday.

    Newbie

    Hi everybody, my name is Gin and I'm new to this network entirely.

     

    My mom, who is 50, was just diagnosed mid July of this year, 2013 with clear cell rcc with mets to her lungs and liver. She had her left radical open nephrectomy on aug 1st, 2013 at Sloan Kettering in NYC. Her patholgy report showed the mass was 8.0x6.2x4.5cm. She is back home and recovering...just taking it easy day by day. The good news is she is off her pain medications and she is tolerating just Tylenol fine. She is already up and walking a mile a day.

    We have received her Votrient in the mail, and we are supposed to start the first week of September. A few days prior to staring, she will have another CT scan and her first MRI of her brain to check for mets there. 

    I don't really know the purpose of this first post...but I just wanted to be able to share her story as well. It's a very good feeling to find other people who are in similar circumstances and understand what we are going through.

    Any advice on what to ask our oncologist before we start the Votrient? Or any advice in general about what types of things are good to ask our oncologist?

     

    I wonder if her mets to her liver will effect her AST/ALT levels once she starts her Votrient.

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