Votrient Side Effects

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  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    moe1131 said:

    BLKAK

    Hello BLKJAK, I plan to continue to work I work at a hospital so I also have very understanding supervisors and team members who are great.

    Sorry to hear about the blood in your urine, but it very well could be UTI I had a few of those and there awful.

     What I have gathered from this site and the Sarcoma Allinnce site sounds like many have had to have their dosage reduced while on this drug, cannot sustain the 800mg. I have to question whether I should start out at 800 mg ? My Oncologist does not have any other patient on this drug. Please keep us posted on how your doing stay strong it's another bump in in the road. I won't start thr drug for another three weeks.

     

     

    BLKAK

    Moe, I'm interested to know what led you to this forum - was it because Votrient is being used for both disorders? 

    Leiomyosarcoma is even rarer than the cancer variety that most of us here have and it doesn't have any connection with kidney cancer as such, does it? I'm aware that the difficult differential diagnosis between GIST and leiomyosarcoma was only firmed up very recently, when it was discovered that the treatment for the two entities is very different (much like the various types of RCC, where who should get what is still, as yet, just guesswork).  As I feel sure you discovered, there are a couple of CSN threads that at first glance look more appropriate but one has become irrelevant since the distinction between Leiomyosarcoma and GIST became established and the other, on leiomyosarcoma, has been inactive for the past three years. 

    So, it makes sense for you to join us Votrient takers on this forum.  Has Votrient been used much so far for your malady? Of course, generalisations have limited value for individuals - we're all so different - but I've noticed that Votrient seems to be much less dose-dependent than, e.g. Sutent and lots of patients seem to do fine on much lower doses of Votrient - right down to 100 mg/day in some cases.  One important factor is your existing liver function and there has been a recent trial on this matter, looking at the tolerability of pazopanib (Votrient) for folks with different levels of liver health.  [Phase 1 Study of Pazopanib in Patients with Advanced Solid Tumors and Hepatic Dysfunction: A National Cancer Institute Organ Dysfunction Working Group Study] ['Hepatic' meaning liver.]

    The trial seems to have established parameters for dose level, at least as far as liver health is concerned:

    Conclusions:
    In patients with mild liver dysfunction, pazopanib is well tolerated at the FDA-approved dose of 800 mg per day. Patients with moderate and severe liver dysfunction tolerated 200 mg per day.

    This may have relevance to your question to BLKJAK, although I don't know what the ramifications are about the efficacy or to different variations among individual patients.  However, it does seem to suggest that the drug is still useful even for patients for whom a lower dose is advisable.

  • moe1131
    moe1131 Member Posts: 8

    BLKAK

    Moe, I'm interested to know what led you to this forum - was it because Votrient is being used for both disorders? 

    Leiomyosarcoma is even rarer than the cancer variety that most of us here have and it doesn't have any connection with kidney cancer as such, does it? I'm aware that the difficult differential diagnosis between GIST and leiomyosarcoma was only firmed up very recently, when it was discovered that the treatment for the two entities is very different (much like the various types of RCC, where who should get what is still, as yet, just guesswork).  As I feel sure you discovered, there are a couple of CSN threads that at first glance look more appropriate but one has become irrelevant since the distinction between Leiomyosarcoma and GIST became established and the other, on leiomyosarcoma, has been inactive for the past three years. 

    So, it makes sense for you to join us Votrient takers on this forum.  Has Votrient been used much so far for your malady? Of course, generalisations have limited value for individuals - we're all so different - but I've noticed that Votrient seems to be much less dose-dependent than, e.g. Sutent and lots of patients seem to do fine on much lower doses of Votrient - right down to 100 mg/day in some cases.  One important factor is your existing liver function and there has been a recent trial on this matter, looking at the tolerability of pazopanib (Votrient) for folks with different levels of liver health.  [Phase 1 Study of Pazopanib in Patients with Advanced Solid Tumors and Hepatic Dysfunction: A National Cancer Institute Organ Dysfunction Working Group Study] ['Hepatic' meaning liver.]

    The trial seems to have established parameters for dose level, at least as far as liver health is concerned:

    Conclusions:
    In patients with mild liver dysfunction, pazopanib is well tolerated at the FDA-approved dose of 800 mg per day. Patients with moderate and severe liver dysfunction tolerated 200 mg per day.

    This may have relevance to your question to BLKJAK, although I don't know what the ramifications are about the efficacy or to different variations among individual patients.  However, it does seem to suggest that the drug is still useful even for patients for whom a lower dose is advisable.

    Texas _ Wedge

    Texas _ Wedge, I came to the site because I was trying to find out more information on the

    side effects of Votrient that individuals were actually having and how they tolerated the drug.I read all the side effects

    listed by the drug company glaxo smith klein which some seem to be very frighting I know they always have to list the very worse.

    I'm not exactly sure how they figured out Votrient works on other Sarcomas Leiomysarcoma and Synovial sarcoma,but I'm glad there

      is another option. I have been on the Sarcoma Alliance site also which my partner found after I mentioned this site.

    I have been in contact with a person who has Synovial cancer and has been battling this cancer for twenty years who is now on

    Votrient a  very strong women who has been a inspiration to me since it's only been two years for me. I see you are very active on

    this site with very good advice and knowledge thank you and thanks to all the site is very informative. I will keep in touch.

  • BLKJAK
    BLKJAK Member Posts: 108
    Three and a half weeks on Votrient....

    and I have my first side effect. I have had my sense of taste change a bit. Foods aren't as flavorful as they once were. I have read that this comes and goes, so if that is true it's no big deal. No other side effects have been noted. I just got a call from the insurance companie's pharmacy for my next month's shipment. So far, so good!

    Hope everyone is doing well kicking cancer's arse!

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

    Three and a half weeks on Votrient....

    and I have my first side effect. I have had my sense of taste change a bit. Foods aren't as flavorful as they once were. I have read that this comes and goes, so if that is true it's no big deal. No other side effects have been noted. I just got a call from the insurance companie's pharmacy for my next month's shipment. So far, so good!

    Hope everyone is doing well kicking cancer's arse!

    S.E.'s and...

    Hi All..!!

    OK, a short recap.. Dx Feb 2012, Radical Neph on March 15 (yes the Ides of March..).  Clear scans until Feb 2013, started Votrient March 1, 2013.  5 weeks later had high Liver Enzymes (almost 1,000.!!), took a 17 day hiatus, liver recovered.  Been back on the Votrient for 5 weeks now..  NO scans yet.. 7 more weeks until I get scanned...

    So, typical side effects, fluctuating blood pressure, diarrhea, major fatigue, hair color (what little I got) changed, weight loss..  This time I also have some skin peeling.. overall not bad...

     

    Also, on the Liver Enzymes, one way to tell if your Enzymes may be elevated is to look at the color of your pee.!  If it is more orange in color, then I would suggest you get checked out...  My Dr today confirmed that is a reasonable "do it yourself" Dx.

    Be Well All...

    Ron

  • BLKJAK
    BLKJAK Member Posts: 108
    BLKJAK said:

    Three and a half weeks on Votrient....

    and I have my first side effect. I have had my sense of taste change a bit. Foods aren't as flavorful as they once were. I have read that this comes and goes, so if that is true it's no big deal. No other side effects have been noted. I just got a call from the insurance companie's pharmacy for my next month's shipment. So far, so good!

    Hope everyone is doing well kicking cancer's arse!

    And on the fourth week...

    I have white hair. I normally have my hair cut short, I use a clipper with no guard every 4-5 days for reference. Well, it was 5 days and I didn't "see" the typical stubble. That is because it is WHITE! I was so hoping to miss this side effect. Maybe I can grow out my hair and beard and be one of the youngest Santa's in the mall this coming winter? Man that side effect came on quick. No indication it was coming. Just BAM - white hair. (Sigh).

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    BLKJAK said:

    And on the fourth week...

    I have white hair. I normally have my hair cut short, I use a clipper with no guard every 4-5 days for reference. Well, it was 5 days and I didn't "see" the typical stubble. That is because it is WHITE! I was so hoping to miss this side effect. Maybe I can grow out my hair and beard and be one of the youngest Santa's in the mall this coming winter? Man that side effect came on quick. No indication it was coming. Just BAM - white hair. (Sigh).

    Fourth week

    Wow - that's fast - let's hope that it indicates that the drug is also having a marked therapeutic effect already, as well as setting you up for Christmas.

  • BLKJAK
    BLKJAK Member Posts: 108

    Fourth week

    Wow - that's fast - let's hope that it indicates that the drug is also having a marked therapeutic effect already, as well as setting you up for Christmas.

    Fourth Week

    I cannot believe it myself. Oh well. Like you said, hopefully this means that Votrient is kicking Cancer's arse and kicking it hard!

  • angec
    angec Member Posts: 924 Member

    Fourth week

    Wow - that's fast - let's hope that it indicates that the drug is also having a marked therapeutic effect already, as well as setting you up for Christmas.

    Tongue feeling sore?

    I can't remember if anyone complained about their tongue being sore without having any physical sores that can be seen.  Anyway, my mom who is on 200 mgs of Votrient seems to be losing weight fast.  Besides the food having no taste, she said her tongue burns when she eats. Although she says she does have an appetite, she won't eat because she can't/doesn't like the taste.  Does anyone have any suggestions? She is using plastic silverware too.  Is there any meds for tongue sores? The doc looked in her mouth but saw nothing.  Scans in July.

     

    Love to all and keep up the fight!

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    angec said:

    Tongue feeling sore?

    I can't remember if anyone complained about their tongue being sore without having any physical sores that can be seen.  Anyway, my mom who is on 200 mgs of Votrient seems to be losing weight fast.  Besides the food having no taste, she said her tongue burns when she eats. Although she says she does have an appetite, she won't eat because she can't/doesn't like the taste.  Does anyone have any suggestions? She is using plastic silverware too.  Is there any meds for tongue sores? The doc looked in her mouth but saw nothing.  Scans in July.

     

    Love to all and keep up the fight!

    Difflam oral rinse

    Ange, snap.   I've been given the above which helps with the mouth sores and the burning tongue. The active ingredient is, I think, Benzydamine hydrochloride - it's for gargling not swallowing and gives pain relief.

    As of last night I've started getting a sense of taste back again, but that's probably due to being off Votrient since Thursday past (as is no nose drying, crusting and bleeding, less bloating, making it easier to eat more and less tumour pain and diarrhoea - but that's in part thanks to switching codeine for paracetamol, the former also being a treatment for diarrhoea).   I hope Mom can manage to eat a bit more and stay active.  My weight loss has stopped since coming off Votrient and if I can get back on it I'll doubtless nedd to try a lower dose.

  • angec
    angec Member Posts: 924 Member

    Difflam oral rinse

    Ange, snap.   I've been given the above which helps with the mouth sores and the burning tongue. The active ingredient is, I think, Benzydamine hydrochloride - it's for gargling not swallowing and gives pain relief.

    As of last night I've started getting a sense of taste back again, but that's probably due to being off Votrient since Thursday past (as is no nose drying, crusting and bleeding, less bloating, making it easier to eat more and less tumour pain and diarrhoea - but that's in part thanks to switching codeine for paracetamol, the former also being a treatment for diarrhoea).   I hope Mom can manage to eat a bit more and stay active.  My weight loss has stopped since coming off Votrient and if I can get back on it I'll doubtless nedd to try a lower dose.

    Thank you TW!  Where would i

    Thank you TW!  Where would i get this item? Is it over the counter by the way?  If not i will call the doc and ask him to prescribe it although if he listens it would be a miracle. He gets angry with me and says I play doctor and do too much reading on the net. Oh well!  LOL  I don't play doctor, i read and ask questions, that might be a bit much for those "God" like doctors!  Good thing he laughs and jokes when he says it, cuz i can see the anger flare up!  

    How long will they keep you off of it?  Yes, you need a holiday from it to give your body a chance to heal a bit so to speak. Mom was off for three weeks and was so hungry she gained back 7 pounds at that time, but lost it again.  Maybe if her mouth stops burning it will help, so thank you much for the info.  How much weight did you lose TW?  I also think a lower dose will be warranted.  Any chance of you getting into any trials my friend?  Praying for  you!  '

    On the positive side, mom has been getting back to being active a bit. She has been cleaning and cooking (great Italian meals i hear!) and moving about.  The 200 dose sure does work better for her, i hope and pray she does well with her scans next month. She was having increasing pains in her stomach and i was a bit worried but found out she once again has a uti. She seems to continue getting them go no avail.  New round of antibiotics for her.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    angec said:

    Thank you TW!  Where would i

    Thank you TW!  Where would i get this item? Is it over the counter by the way?  If not i will call the doc and ask him to prescribe it although if he listens it would be a miracle. He gets angry with me and says I play doctor and do too much reading on the net. Oh well!  LOL  I don't play doctor, i read and ask questions, that might be a bit much for those "God" like doctors!  Good thing he laughs and jokes when he says it, cuz i can see the anger flare up!  

    How long will they keep you off of it?  Yes, you need a holiday from it to give your body a chance to heal a bit so to speak. Mom was off for three weeks and was so hungry she gained back 7 pounds at that time, but lost it again.  Maybe if her mouth stops burning it will help, so thank you much for the info.  How much weight did you lose TW?  I also think a lower dose will be warranted.  Any chance of you getting into any trials my friend?  Praying for  you!  '

    On the positive side, mom has been getting back to being active a bit. She has been cleaning and cooking (great Italian meals i hear!) and moving about.  The 200 dose sure does work better for her, i hope and pray she does well with her scans next month. She was having increasing pains in her stomach and i was a bit worried but found out she once again has a uti. She seems to continue getting them go no avail.  New round of antibiotics for her.

    Difflam oral rinse

    Ange, after a  bit of searching online, I see why you haven't come across it.  It's used in medically leading nations around the planet but doesn't seem to be readily available in the US.  Perhaps you can find someone knowledgeable to help - maybe a good local pharmacist could tell you more?  It's a good enough med to be worth pursuing. 

    Glad Mom is picking up a bit and getting more active - that sounds like very good news.  If the UTI problem can be knocked on the head maybe she'll continue to do well on 200 mg/day of Votrient.  I hope you are a bit better youself and looking after yourself as well as everyone else!

    I'm hoping to get back onto V. sooner rather than later, maybe on 600.  As things stand at present, there isn't a trial of any kind that I could qualify for - hence the hope to get back on V - asap!  Chances are improving (will update my Blog later today on last couple of days' events).

    As you know, I'm a native-speaker of the Fox Language! I'll illustrate:  I have final stage cancer; I have sporadic stomatitis and bouts of gastric problems etc; on Sunday I suddenly contracted what turned out to be a potentially fatal infection and couldn't walk for a day or so; my CRP yesterday was 27  (normal range 0 - 10); today I'm somewhat dehydrated and I'm radioactive from a full-body bone-scan this afternoon and have been having pain from a shoulder muscle (pulled at golf).  Someone asked me how I am and I promptly replied, in Fox, with 

    "I'm fine!  How are you keeping, I gather you've been suffering from a heavy cold - I hope you're feeling better." 

    Have to think of our friend Fox whenever such an incident occurs!

  • alice124
    alice124 Member Posts: 896 Member
    angec said:

    Thank you TW!  Where would i

    Thank you TW!  Where would i get this item? Is it over the counter by the way?  If not i will call the doc and ask him to prescribe it although if he listens it would be a miracle. He gets angry with me and says I play doctor and do too much reading on the net. Oh well!  LOL  I don't play doctor, i read and ask questions, that might be a bit much for those "God" like doctors!  Good thing he laughs and jokes when he says it, cuz i can see the anger flare up!  

    How long will they keep you off of it?  Yes, you need a holiday from it to give your body a chance to heal a bit so to speak. Mom was off for three weeks and was so hungry she gained back 7 pounds at that time, but lost it again.  Maybe if her mouth stops burning it will help, so thank you much for the info.  How much weight did you lose TW?  I also think a lower dose will be warranted.  Any chance of you getting into any trials my friend?  Praying for  you!  '

    On the positive side, mom has been getting back to being active a bit. She has been cleaning and cooking (great Italian meals i hear!) and moving about.  The 200 dose sure does work better for her, i hope and pray she does well with her scans next month. She was having increasing pains in her stomach and i was a bit worried but found out she once again has a uti. She seems to continue getting them go no avail.  New round of antibiotics for her.

    Ange - Glad to hear mom is

    Ange - Glad to hear mom is improving on the lower dose of Votrient. 

    When John developed mouth sores recently, Votrient was discontinued for a week and he was prescribed Chlorhexidine Gluconate (0.12%)  oral rinse. It is the same rinse prescribed to me when I had a root canal a couple of years earlier. It is obtained through prescription and is basically an anti-bacterial rinse,  but-- if you can't get your doc to write--you might try your dentist. Both John and I found it to be rather soothing and refreshing. 

    Will keep fingers crossed for scans next month.

     

     

     

     

  • BDS
    BDS Member Posts: 172
    One Year on Votrient. (Well Almost)

    On July 28 2012, I took my first 800 mg dose of Votrient after having my left kidney removed on June 11, 2012. Yesterday, I had my appointment with my oncologist at Fox Chase Cancer Center to review my latest scans taken on June 12th. After almost a year all my metastatic tumors have decreased from their original size and no new tumors have shown up. (Yeah!Laughing) A couple of the tumors are now starting to appear less dense – supposedly that is a good thing. My oncologist was very pleased with my progress so much so that see does not want to see me for four months (Oh I feel SO rejected!).  If all goes well next year I will still be on Votrient and have additional good news to report. During the past year the most difficult side effects have been diarrhea (Not FUN!) and a bit of fatigue. Otherwise, my life is pretty much back to normal, I am still working full time and still exercise at the gym three/four times a week - treadmill, weights, swimming and yoga.

    So here is to slow and steady progress – Life is Good! - BDS

    Tortise

     

  • alice124
    alice124 Member Posts: 896 Member
    BDS said:

    One Year on Votrient. (Well Almost)

    On July 28 2012, I took my first 800 mg dose of Votrient after having my left kidney removed on June 11, 2012. Yesterday, I had my appointment with my oncologist at Fox Chase Cancer Center to review my latest scans taken on June 12th. After almost a year all my metastatic tumors have decreased from their original size and no new tumors have shown up. (Yeah!Laughing) A couple of the tumors are now starting to appear less dense – supposedly that is a good thing. My oncologist was very pleased with my progress so much so that see does not want to see me for four months (Oh I feel SO rejected!).  If all goes well next year I will still be on Votrient and have additional good news to report. During the past year the most difficult side effects have been diarrhea (Not FUN!) and a bit of fatigue. Otherwise, my life is pretty much back to normal, I am still working full time and still exercise at the gym three/four times a week - treadmill, weights, swimming and yoga.

    So here is to slow and steady progress – Life is Good! - BDS

    Tortise

     

    Yippeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!!!!!!!!!!!!!!!!!!!!!!!

    What a great way to start a weekend! Congratulations BDS -- job well done (in many ways). Here's to more TUMOR shrinkage or--even better--disappearance!

     

    Now we just need to get Tex back on track! You reading this Tex!?!?

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    alice124 said:

    Yippeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!!!!!!!!!!!!!!!!!!!!!!!

    What a great way to start a weekend! Congratulations BDS -- job well done (in many ways). Here's to more TUMOR shrinkage or--even better--disappearance!

     

    Now we just need to get Tex back on track! You reading this Tex!?!?

    Yippeeeeeeeeeeeeeeee

    You betcha Alice!  (Have just responded to Robin with some detail re me and updated my blog. Latest bulletin - nearly 1 a.m. about to retire with hefty pain meds and antibiotics - should sleep tonight, at last.  Going to Edinburgh tomorrow with much to do so need some sleep.)

    Wonderful to read BDS, and couldn't happen to a worthier guy (and it's good to see that you come out of your shell occasionally!).

  • GSRon
    GSRon Member Posts: 1,303

    Yippeeeeeeeeeeeeeeee

    You betcha Alice!  (Have just responded to Robin with some detail re me and updated my blog. Latest bulletin - nearly 1 a.m. about to retire with hefty pain meds and antibiotics - should sleep tonight, at last.  Going to Edinburgh tomorrow with much to do so need some sleep.)

    Wonderful to read BDS, and couldn't happen to a worthier guy (and it's good to see that you come out of your shell occasionally!).

    High BP

    Hi All..  OK, so yesterday was interesting..  I take my blood pressure twice a day.   Typically it is slightly high in the morning which is when I take the BP med Metoprolol, and about an hour later my BP starts to decline.  But yesterday it was different.. my BP kept climbing.. sheesh.  Three hours later it was still over 165 / 95.  So, I got out the super pill Norvasc and another two hours still high.  Finally around 4 PM my BP started to drop and by dinner time I was in the OK zone.  FYI, when my BP is just medium high I get a headache.   Today it all was back to the usual routine.  Oh yes and a couple of times over the last few months, my BP would go ultra low..  This just means it is good to monitor your BP at least twice a day while on Votrient.

    Be Well All..!

    Ron :)

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    GSRon said:

    High BP

    Hi All..  OK, so yesterday was interesting..  I take my blood pressure twice a day.   Typically it is slightly high in the morning which is when I take the BP med Metoprolol, and about an hour later my BP starts to decline.  But yesterday it was different.. my BP kept climbing.. sheesh.  Three hours later it was still over 165 / 95.  So, I got out the super pill Norvasc and another two hours still high.  Finally around 4 PM my BP started to drop and by dinner time I was in the OK zone.  FYI, when my BP is just medium high I get a headache.   Today it all was back to the usual routine.  Oh yes and a couple of times over the last few months, my BP would go ultra low..  This just means it is good to monitor your BP at least twice a day while on Votrient.

    Be Well All..!

    Ron :)

    High BP

    Ron, the point of monitoring closely like this is to have important info available to your care team AND to act on it when necessary. 

    It sounds to me as if it's worth considering a change of BP meds to look for more dependable control.   I was taking Amlodipine - never again (and it nearly killed me with a burgeoning delayed allergic reaction) and it wasn't doing much of a job on my BP.  I was switched to the lowest dose of each of two other meds with different mechanisms of action and they give far more effective control with neglible side-effects, so far.

  • BLKJAK
    BLKJAK Member Posts: 108
    BDS said:

    One Year on Votrient. (Well Almost)

    On July 28 2012, I took my first 800 mg dose of Votrient after having my left kidney removed on June 11, 2012. Yesterday, I had my appointment with my oncologist at Fox Chase Cancer Center to review my latest scans taken on June 12th. After almost a year all my metastatic tumors have decreased from their original size and no new tumors have shown up. (Yeah!Laughing) A couple of the tumors are now starting to appear less dense – supposedly that is a good thing. My oncologist was very pleased with my progress so much so that see does not want to see me for four months (Oh I feel SO rejected!).  If all goes well next year I will still be on Votrient and have additional good news to report. During the past year the most difficult side effects have been diarrhea (Not FUN!) and a bit of fatigue. Otherwise, my life is pretty much back to normal, I am still working full time and still exercise at the gym three/four times a week - treadmill, weights, swimming and yoga.

    So here is to slow and steady progress – Life is Good! - BDS

    Tortise

     

    That's fantastic news!

    I am so happy for your good report!! It really gives me (and other newbies to Votrient) a great sense of hope. News like this really lifts my spirits and brightens my day. Thank-you for posting, and here's hoping for continues success on Votrient.

  • saintmont
    saintmont Member Posts: 63
    that news is great

    That is wonderful news, keep going with good work.

  • GSRon
    GSRon Member Posts: 1,303

    High BP

    Ron, the point of monitoring closely like this is to have important info available to your care team AND to act on it when necessary. 

    It sounds to me as if it's worth considering a change of BP meds to look for more dependable control.   I was taking Amlodipine - never again (and it nearly killed me with a burgeoning delayed allergic reaction) and it wasn't doing much of a job on my BP.  I was switched to the lowest dose of each of two other meds with different mechanisms of action and they give far more effective control with neglible side-effects, so far.

    It happens..

    Hi Wedgie..   Since like February, this has happened twice.  The BP meds are working.. just a blip in the road...  :)   This morning I am at 125 / 72, and that is before I took my BP meds.  If what others have said, this just is a good sign that the Votrient is working.. hope so.. I get my first scans on July 5th...

    Ron '-'