Axitinib / Inlyta

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Comments

  • liznjon
    liznjon Member Posts: 1
    Be  careful with inytla had 2

    Be  careful with inytla had 2 seizures in hospital for 8 days know on meds for seizures and switch to votrient which i am tolreting  hope it works for you

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

    Be  careful with inytla had 2

    Be  careful with inytla had 2 seizures in hospital for 8 days know on meds for seizures and switch to votrient which i am tolreting  hope it works for you

    No big deal... especially

    No big deal... especially compared to that HD-IL2 stuff..!  Overall I feel darn lucky to still be here... and my comments are purely for others to know what may be experienced while in Inlyta...   Oh yes, and hopefully there is some intertainment value as well..   I did forget to mention that I have a face full of zits.!  Yes, I now feel a bit like a teenager again... right... NOT..!!  However you can tell in the scheme of things this too is minor.. so minor I forgot to mention it earlier...

    And I should state that telling you about the two heart attacks, is to remember that others have health issues too..  Just a bit of life's perspective. 

    Be Well All..!!

    Ron

  • angec
    angec Member Posts: 924 Member
    GSRon said:

    No big deal... especially

    No big deal... especially compared to that HD-IL2 stuff..!  Overall I feel darn lucky to still be here... and my comments are purely for others to know what may be experienced while in Inlyta...   Oh yes, and hopefully there is some intertainment value as well..   I did forget to mention that I have a face full of zits.!  Yes, I now feel a bit like a teenager again... right... NOT..!!  However you can tell in the scheme of things this too is minor.. so minor I forgot to mention it earlier...

    And I should state that telling you about the two heart attacks, is to remember that others have health issues too..  Just a bit of life's perspective. 

    Be Well All..!!

    Ron

    Well Ron, on the brighter

    Well Ron, on the brighter side of things.... always a brighter side right?  This drug has brought you back to puberty!  Hail Inlayta!  Be careful on the drive.

  • foxhd
    foxhd Member Posts: 3,181 Member
    angec said:

    Well Ron, on the brighter

    Well Ron, on the brighter side of things.... always a brighter side right?  This drug has brought you back to puberty!  Hail Inlayta!  Be careful on the drive.

    poster

    Ron, I've sent you are Mily Cyrus poster. I know that in our day it was Farah Fawcette. But, I thought it would go with the zits.

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

    poster

    Ron, I've sent you are Mily Cyrus poster. I know that in our day it was Farah Fawcette. But, I thought it would go with the zits.

    Oh my...  OK, so I learned a

    Oh my...  OK, so I learned a lot today... not much good... per se.   Well, you see that up until today, none of my family knew about my Cancer, last year's operation etc.   But as I am attending my Aunt's funeral this week... I knew it would come out.   So I told my one cousin this morning, and needless to say the word spread faster than my Mets...   So, I just talked to my other cousin.. had not talked to her is about 40 years... well her son has polycystic kidney disease, she has thyroid issues (Cancer..?), and another cousin has Ovarian Cancer... Needless to say there is a lot of Cancer within my family..!  I did send the CSN link to my one Cuz, and I suggested she pass it on to those that need it...   I can only wonder if somehow we all got bad genes...??

    Be Well All..!!!

    Ron 

  • angec
    angec Member Posts: 924 Member
    GSRon said:

    Oh my...  OK, so I learned a

    Oh my...  OK, so I learned a lot today... not much good... per se.   Well, you see that up until today, none of my family knew about my Cancer, last year's operation etc.   But as I am attending my Aunt's funeral this week... I knew it would come out.   So I told my one cousin this morning, and needless to say the word spread faster than my Mets...   So, I just talked to my other cousin.. had not talked to her is about 40 years... well her son has polycystic kidney disease, she has thyroid issues (Cancer..?), and another cousin has Ovarian Cancer... Needless to say there is a lot of Cancer within my family..!  I did send the CSN link to my one Cuz, and I suggested she pass it on to those that need it...   I can only wonder if somehow we all got bad genes...??

    Be Well All..!!!

    Ron 

    What an eye opener for you

    What an eye opener for you today!   I see alot of cancer going on today and I am not too sure it all depends on genes.  MY SIL who is 47 and has stage 4 uterine cancer had great scans two months ago, where some spots were gone and others were smaller. This week she goes for another scan and they are growing again! :(  I have heard of three of my friends who have cancer just last week, my mom has RCC, my other SIL's aunt has breast cancer and she just lost her sister to breast cancer.  The list goes on and on. And yet, no cure yet?  Besides a cure, the food industry is trying to kill us with GMO's, food imported from other parts of the world where dog food isn't even safe, no label information, etc.  We all have to stay vigiliant with our diet, eat organic, locally grown fruits and veges if we can, grass fed meat with no hormones or antibiotics. I am incorporating raw veges into my diet more and more and trying to juice daily. 

    But Ron, I hope the new scans show some positive results for you on the new drug. I wanted to ask, what is the normal dosage for that drug?  I know there are several different dosages.  Do you take one am and one pm?  How are the side affects treating you at the moment?  Are you on Milk Thistle?  I hope you were able to find out just what is happening with your liver.  Did they do all kinds of tests and even offer you the hepatitis vaccine? They offered that to my brother because he had high numbers but thankfully we got his numbers down.

    Keep your chin up!!  By the way, the bike is really nice! ;)

     

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

    What an eye opener for you

    What an eye opener for you today!   I see alot of cancer going on today and I am not too sure it all depends on genes.  MY SIL who is 47 and has stage 4 uterine cancer had great scans two months ago, where some spots were gone and others were smaller. This week she goes for another scan and they are growing again! :(  I have heard of three of my friends who have cancer just last week, my mom has RCC, my other SIL's aunt has breast cancer and she just lost her sister to breast cancer.  The list goes on and on. And yet, no cure yet?  Besides a cure, the food industry is trying to kill us with GMO's, food imported from other parts of the world where dog food isn't even safe, no label information, etc.  We all have to stay vigiliant with our diet, eat organic, locally grown fruits and veges if we can, grass fed meat with no hormones or antibiotics. I am incorporating raw veges into my diet more and more and trying to juice daily. 

    But Ron, I hope the new scans show some positive results for you on the new drug. I wanted to ask, what is the normal dosage for that drug?  I know there are several different dosages.  Do you take one am and one pm?  How are the side affects treating you at the moment?  Are you on Milk Thistle?  I hope you were able to find out just what is happening with your liver.  Did they do all kinds of tests and even offer you the hepatitis vaccine? They offered that to my brother because he had high numbers but thankfully we got his numbers down.

    Keep your chin up!!  By the way, the bike is really nice! ;)

     

    Where do I start..??  OK, I

    Where do I start..??  OK, I am taking 5 MG Inlyta twice a day... which is about mid dosage as far as I can tell.   I think max dose is about double what I am on.. and some people do like a 5 MG and a 2 MG.   No major side effects as of today...  Hypertension is listed as occuring about 48% of patients... so that is the main worry..  Hand and foot (I have that, worst part is the skin issues mid body.. nuff said)..  I have teen like acne, and some fatigue..  Not bad... really not bad... the skin issues I am using lotion on and that reduces the itchy feeling which helps.

     

    OK, maybe this is not the best place to post this part.. but I will start here... anyone feel free to add it somewhere else if there is such a need... dunno...

     

    Bilirubin - Aha..  my Onc said I had a disease called Joe Bears...   I tried to find it, but could not...   So today I saw my Cardio Dr (she is great.. also good looking.. Ooops..!!).  Anywas my Cardio doc spends more quality time with me, and seems to like it when I question things..  When I brought up my Bilirubin issue she aske about my Liver Enzymes, and I said they are normal now... she blurted out.. you have classic Gilbert's disease... Gilbert was a French guy so you pronounce it Joe Bears... geeesh...    OK, so Gilbert's is no big deal.. yes my Biliruben will be above normal... but nothing to worry about.   My Cardio Doc says like 10% of the population have Gilbert's and do not even know it.. duh...!!  Ding ding ding...   So I will post two links below that give good info...

    So we had a chat about Norvasc (Amplodomine) and she kind of chuckled... and put things in perspective...  IF a person is at Max dose then yes Liver issues can happen.  But I am on a very small dose AND I only take it when I need it, which is less than once a week.. No issue...   And she told me more.. basically there are two kinds of B.P. meds, ones that metabolize in the liver and ones that use the Kidney... take your pick..??   Aha.. now I understant... but she also stated that Statins would not be good for me...(I knew that already).   So the nurse took my BP and it was normal... like 125 over 72.   I was surprized, so the Doc took my BP twice more.. same results... cool..!!   My Cardio Doc is all for how I am managing my BP.  I take the Metroprolo daily (50 MG)  Up that dose to double if need be, and use the Norvasc should my BP go crazy...  And if it goes crazy take a Norvasac or even two of them.. and if my BP is not behaving call her ASAP...!   Like I said she is awesome..!!  

    So here are two Liver links... remember, there must be 50 ways to love your Liver....""

     

    Ron  :)

     

    http://www.howtodothings.com/health-and-fitness/a4674-how-to-understand-gilberts-syndrome.html

     

    http://www.liverdoctor.com/liver-problems/gilbert-syndrome/

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

    Where do I start..??  OK, I

    Where do I start..??  OK, I am taking 5 MG Inlyta twice a day... which is about mid dosage as far as I can tell.   I think max dose is about double what I am on.. and some people do like a 5 MG and a 2 MG.   No major side effects as of today...  Hypertension is listed as occuring about 48% of patients... so that is the main worry..  Hand and foot (I have that, worst part is the skin issues mid body.. nuff said)..  I have teen like acne, and some fatigue..  Not bad... really not bad... the skin issues I am using lotion on and that reduces the itchy feeling which helps.

     

    OK, maybe this is not the best place to post this part.. but I will start here... anyone feel free to add it somewhere else if there is such a need... dunno...

     

    Bilirubin - Aha..  my Onc said I had a disease called Joe Bears...   I tried to find it, but could not...   So today I saw my Cardio Dr (she is great.. also good looking.. Ooops..!!).  Anywas my Cardio doc spends more quality time with me, and seems to like it when I question things..  When I brought up my Bilirubin issue she aske about my Liver Enzymes, and I said they are normal now... she blurted out.. you have classic Gilbert's disease... Gilbert was a French guy so you pronounce it Joe Bears... geeesh...    OK, so Gilbert's is no big deal.. yes my Biliruben will be above normal... but nothing to worry about.   My Cardio Doc says like 10% of the population have Gilbert's and do not even know it.. duh...!!  Ding ding ding...   So I will post two links below that give good info...

    So we had a chat about Norvasc (Amplodomine) and she kind of chuckled... and put things in perspective...  IF a person is at Max dose then yes Liver issues can happen.  But I am on a very small dose AND I only take it when I need it, which is less than once a week.. No issue...   And she told me more.. basically there are two kinds of B.P. meds, ones that metabolize in the liver and ones that use the Kidney... take your pick..??   Aha.. now I understant... but she also stated that Statins would not be good for me...(I knew that already).   So the nurse took my BP and it was normal... like 125 over 72.   I was surprized, so the Doc took my BP twice more.. same results... cool..!!   My Cardio Doc is all for how I am managing my BP.  I take the Metroprolo daily (50 MG)  Up that dose to double if need be, and use the Norvasc should my BP go crazy...  And if it goes crazy take a Norvasac or even two of them.. and if my BP is not behaving call her ASAP...!   Like I said she is awesome..!!  

    So here are two Liver links... remember, there must be 50 ways to love your Liver....""

     

    Ron  :)

     

    http://www.howtodothings.com/health-and-fitness/a4674-how-to-understand-gilberts-syndrome.html

     

    http://www.liverdoctor.com/liver-problems/gilbert-syndrome/

    Numbers

    Ron, what are your liver enzyme numbers now and did your bilirubin go over the 400 mark, like mine? 

    I'm glad to hear you're coping well with the s-e's.  I guess you'll be following the big Conversations on that topic on SP? Incidentally, you'll see I've made another side-swipe at Norvasc while warning folks there about new  European findings about metoclopramide - too dangerous for anyone in their right mind to take for more than 5 days and best avoided completely!

  • angec
    angec Member Posts: 924 Member
    GSRon said:

    Where do I start..??  OK, I

    Where do I start..??  OK, I am taking 5 MG Inlyta twice a day... which is about mid dosage as far as I can tell.   I think max dose is about double what I am on.. and some people do like a 5 MG and a 2 MG.   No major side effects as of today...  Hypertension is listed as occuring about 48% of patients... so that is the main worry..  Hand and foot (I have that, worst part is the skin issues mid body.. nuff said)..  I have teen like acne, and some fatigue..  Not bad... really not bad... the skin issues I am using lotion on and that reduces the itchy feeling which helps.

     

    OK, maybe this is not the best place to post this part.. but I will start here... anyone feel free to add it somewhere else if there is such a need... dunno...

     

    Bilirubin - Aha..  my Onc said I had a disease called Joe Bears...   I tried to find it, but could not...   So today I saw my Cardio Dr (she is great.. also good looking.. Ooops..!!).  Anywas my Cardio doc spends more quality time with me, and seems to like it when I question things..  When I brought up my Bilirubin issue she aske about my Liver Enzymes, and I said they are normal now... she blurted out.. you have classic Gilbert's disease... Gilbert was a French guy so you pronounce it Joe Bears... geeesh...    OK, so Gilbert's is no big deal.. yes my Biliruben will be above normal... but nothing to worry about.   My Cardio Doc says like 10% of the population have Gilbert's and do not even know it.. duh...!!  Ding ding ding...   So I will post two links below that give good info...

    So we had a chat about Norvasc (Amplodomine) and she kind of chuckled... and put things in perspective...  IF a person is at Max dose then yes Liver issues can happen.  But I am on a very small dose AND I only take it when I need it, which is less than once a week.. No issue...   And she told me more.. basically there are two kinds of B.P. meds, ones that metabolize in the liver and ones that use the Kidney... take your pick..??   Aha.. now I understant... but she also stated that Statins would not be good for me...(I knew that already).   So the nurse took my BP and it was normal... like 125 over 72.   I was surprized, so the Doc took my BP twice more.. same results... cool..!!   My Cardio Doc is all for how I am managing my BP.  I take the Metroprolo daily (50 MG)  Up that dose to double if need be, and use the Norvasc should my BP go crazy...  And if it goes crazy take a Norvasac or even two of them.. and if my BP is not behaving call her ASAP...!   Like I said she is awesome..!!  

    So here are two Liver links... remember, there must be 50 ways to love your Liver....""

     

    Ron  :)

     

    http://www.howtodothings.com/health-and-fitness/a4674-how-to-understand-gilberts-syndrome.html

     

    http://www.liverdoctor.com/liver-problems/gilbert-syndrome/

    Thanks Ron, for the personal

    Thanks Ron, for the personal information and info about Gilbert's. I would have looked it up the same way, Joe Bear's!  Glad things are working out with the bp meds and you seem to be fine!   I think acne is adorable on a man in his 60's!  ;)  Along with the colorful hair! 

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

    Thanks Ron, for the personal

    Thanks Ron, for the personal information and info about Gilbert's. I would have looked it up the same way, Joe Bear's!  Glad things are working out with the bp meds and you seem to be fine!   I think acne is adorable on a man in his 60's!  ;)  Along with the colorful hair! 

    FYI, the hair color is gone..

    FYI, the hair color is gone.. back to the salt and pepper..  Yes the all white look is gone with the Votrient...  OK so aside from the Bilirubin my Liver numbers are great..  Kidney not great, but nothing major bad either.

    Here are a bunch of numbers... more than just Liver.. FYI

    eGFR 41 (too low, I know...)

    Bilirubin 2.2 (high)

    Glucose 90 (nice..!!)

    Alk 55

    AST 20

    Alt 28

    Creatinine 1.8

    All the other blood tests are in normal range... even my WBC is up.   Note this test was taken on 9-3-13 after being off of Votrient almost 2 months.

     

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

    FYI, the hair color is gone..

    FYI, the hair color is gone.. back to the salt and pepper..  Yes the all white look is gone with the Votrient...  OK so aside from the Bilirubin my Liver numbers are great..  Kidney not great, but nothing major bad either.

    Here are a bunch of numbers... more than just Liver.. FYI

    eGFR 41 (too low, I know...)

    Bilirubin 2.2 (high)

    Glucose 90 (nice..!!)

    Alk 55

    AST 20

    Alt 28

    Creatinine 1.8

    All the other blood tests are in normal range... even my WBC is up.   Note this test was taken on 9-3-13 after being off of Votrient almost 2 months.

     

    What a difference a few days

    What a difference a few days make...  I guess I spoke too soon.  My BP spiked  big time yesterday, and still is way high.  It went up to 195 / 110..!  I took lots of pills to bring it down.. finally a full day plus later it is now just a little high.. 138 / 85.  For me, high BP gives me a nasty headache.. and it finally is a low grade headache..  Oh I also had some slight nausea, but a single piece of hard candy does the trick...  One more week until my one month blood tests... woo hoo..!!!

    Be Well All..!!

    Ron

  • cran1
    cran1 Member Posts: 139
    GSRon said:

    What a difference a few days

    What a difference a few days make...  I guess I spoke too soon.  My BP spiked  big time yesterday, and still is way high.  It went up to 195 / 110..!  I took lots of pills to bring it down.. finally a full day plus later it is now just a little high.. 138 / 85.  For me, high BP gives me a nasty headache.. and it finally is a low grade headache..  Oh I also had some slight nausea, but a single piece of hard candy does the trick...  One more week until my one month blood tests... woo hoo..!!!

    Be Well All..!!

    Ron

    Be well Ron.
     

    Be well Ron.

     

  • Alexandra
    Alexandra Member Posts: 1,308
    GSRon said:

    What a difference a few days

    What a difference a few days make...  I guess I spoke too soon.  My BP spiked  big time yesterday, and still is way high.  It went up to 195 / 110..!  I took lots of pills to bring it down.. finally a full day plus later it is now just a little high.. 138 / 85.  For me, high BP gives me a nasty headache.. and it finally is a low grade headache..  Oh I also had some slight nausea, but a single piece of hard candy does the trick...  One more week until my one month blood tests... woo hoo..!!!

    Be Well All..!!

    Ron

    Hang in there buddy

    Don't be a daredevil on your bike with the pink helmet, keep you BP down. Good luck with those blood tests next week.

    Speaking of zits, do you know the difference between a priest and acne?

    Hugs,

    Alexandra

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

    Hang in there buddy

    Don't be a daredevil on your bike with the pink helmet, keep you BP down. Good luck with those blood tests next week.

    Speaking of zits, do you know the difference between a priest and acne?

    Hugs,

    Alexandra

    Whew..!!  Here it is, late

    Whew..!!  Here it is, late Sunday night.. BP is again normal... headache gone.. life is good..!  Thanks for the good wishes Cran and Alexandra..  I forgot to mention that I also have a lapel pin like the decal on my racer... yes a pink helmet with a ribbon on it...!!  Time to get some made with the right Kidney color... wear them both...

     

    Ok, you can pop a Zit but not a priest..??  :)

    Ron

  • Alexandra
    Alexandra Member Posts: 1,308
    GSRon said:

    Whew..!!  Here it is, late

    Whew..!!  Here it is, late Sunday night.. BP is again normal... headache gone.. life is good..!  Thanks for the good wishes Cran and Alexandra..  I forgot to mention that I also have a lapel pin like the decal on my racer... yes a pink helmet with a ribbon on it...!!  Time to get some made with the right Kidney color... wear them both...

     

    Ok, you can pop a Zit but not a priest..??  :)

    Ron

    I didn't want to write it, but you forced me Ron

    Acne usually comes on a boy's face AFTER he turns 13

  • garym
    garym Member Posts: 1,647
    Alexandra said:

    I didn't want to write it, but you forced me Ron

    Acne usually comes on a boy's face AFTER he turns 13

    You are soooo baaaad...

    I LOVE IT!!!  LMAOROTF

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

    You are soooo baaaad...

    I LOVE IT!!!  LMAOROTF

    But perhaps you like to be

    But perhaps you like to be forced... oh my... that was sooooo bad...!!  :)

    Ron

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

    But perhaps you like to be

    But perhaps you like to be forced... oh my... that was sooooo bad...!!  :)

    Ron

     
     
    ok.. Just got told that

     

     

    ok.. Just got told that my red blood cell count is too high. Time for the leaches. They are going to take a couple of pints..

  • angec
    angec Member Posts: 924 Member
    GSRon said:

     
     
    ok.. Just got told that

     

     

    ok.. Just got told that my red blood cell count is too high. Time for the leaches. They are going to take a couple of pints..

    Ron, what exactly does that

    Ron, what exactly does that mean? Will taking blood lower it or do they just want to run more tests? My thinking cap is off right now! How is everything else? How is the liver?  Hope all is good!

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

    Ron, what exactly does that

    Ron, what exactly does that mean? Will taking blood lower it or do they just want to run more tests? My thinking cap is off right now! How is everything else? How is the liver?  Hope all is good!

    hi Angie.. The vampire just

    hi Angie.. The vampire just drained half a liter out of me. My blood is very thick like syrup. Dr was concerned about a stroke. But I also had six pretty nurses to hold my hand.