Axitinib / Inlyta

178101213

Comments

  • NanoSecond
    NanoSecond Member Posts: 653
    angec said:

    Neil, one other question.

    Neil, one other question.  Were you able to find out if you can do the IL-2 or did you try that already?  Is there any chance of trying the Cabo before the afinitor?  I guess they won't treat you with any drug, until the radiation and surgery is done?  I hope it takes place sooner than later.  Have you changed anything in your diet perhaps?  Praying for you to make the best decision. I wish there was a trial you could get in.  Anything i can do to help?  XX

    John (One Putt).  Many

    John (One Putt).  Many thanks.  One of the things I have been trying to do is get a second opinion from Dr. Hammers.  But he is so popular and busy that the earliest I can get in to see him is March 27th.

    Angec.  Many thanks for your offer.  I did not consider HD IL-2 because it seemed to have such a low response rate for non-clear cell patients.  I was actually hoping to avoid what has just happened to me (wasting my time with a futile therapy). Yes, Cabo is a distinct possibility but so far I have only failed one TKI and I suspect that I will first need to fail an mTOR as well before my insurance company will be persuaded to cover it off label.

    As to my diet I have not changed it but I have eliminated a few anti-oxidant supplements (no more Resveratrol, Vitamin C or Milk Thistle).  I am still completely convinced that controlling my blood glucose is extremely important.  Please keep in mind that I am now taking Metformin as well.  It may be complete fantasy but I actually think that now that I have stopped Inlyta I may be psosibly slowing down the progression of those liver mets.  I only say this because the brand new bone lesion on my right hip is not progressing rapidly whereas under Inlyta I definitely had rapid progression of my left femur lesion (I can feel these guys).

    Right now I am holding out for a suitable anti-PD1 or anti-PDL1 trial.  But I will have to make a decision by the end of the week.

    Many thanks again for all your kind thoughts and prayers.

     

  • angec
    angec Member Posts: 924 Member
    Neil, how long have you been

    Neil, how long have you been taking the metforim?  I know you think this is crazy, but it is a hormone yes? Do you need it or are you taking it just for the cancer?  I was told by a doctor that any hormone would increase cancer burdens, especially if not necessary.  I am not meaning to scare you. Why did you stop taking resveratrol and the others? You were doing just fine with those. Maybe you need to look at the calendar with your notes.

     

    1. When did metform start / when did Sutent fail.  Was the dosage correction at fault at all? 

    2. When did you stop taking the vitamins?

    Just a thought.  You failed two drugs at the moment, Sutent and Inlyta, wouldn't that qualify you for cabo? Do all doctors really pay attention to the type of inhibitor? Most of them just got by name, half of them don't know what they do, tki, mtor etc.  Just saying, that maybe you should ask and try for what your gut tells you. Maybe you can get it.  I also would try for the il-2. You have nothing to lose. 

    Just trying to brainstorm, but I am sure you are on top of it.  Always here if you need anything! ;)  Please don't mind the suggestions. You know what is right for you!  Praying for good decisions.  XX

  • NanoSecond
    NanoSecond Member Posts: 653
    angec said:

    Neil, how long have you been

    Neil, how long have you been taking the metforim?  I know you think this is crazy, but it is a hormone yes? Do you need it or are you taking it just for the cancer?  I was told by a doctor that any hormone would increase cancer burdens, especially if not necessary.  I am not meaning to scare you. Why did you stop taking resveratrol and the others? You were doing just fine with those. Maybe you need to look at the calendar with your notes.

     

    1. When did metform start / when did Sutent fail.  Was the dosage correction at fault at all? 

    2. When did you stop taking the vitamins?

    Just a thought.  You failed two drugs at the moment, Sutent and Inlyta, wouldn't that qualify you for cabo? Do all doctors really pay attention to the type of inhibitor? Most of them just got by name, half of them don't know what they do, tki, mtor etc.  Just saying, that maybe you should ask and try for what your gut tells you. Maybe you can get it.  I also would try for the il-2. You have nothing to lose. 

    Just trying to brainstorm, but I am sure you are on top of it.  Always here if you need anything! ;)  Please don't mind the suggestions. You know what is right for you!  Praying for good decisions.  XX

    Metformin

    Hi Ange,

    Thanks for your concerns.  First, Metformin is not a hormone.  It's also know as Glucophage and it is derived from a certain fungus.  If you are interested I can send and point you to numerous studies that show that those patients taking Metformin (Type II Diabetic patients) seem to do much, much better cancer-wise than those who don't.  That is why it is currently the center of at least 60 different medical research programs right now.

    I started taking Metformin only after Sutent had failed me.  I started on it in early January.

    Yes, it is possible that my lowering my Sutent dosage to 37.5mg (continuously, with no breaks) might have contributed to allowing mets to take hold in my liver.  There is really no way to know for sure.  All I do know is that Sutent had not failed to control my bone mets even at that lower dosage.

    Finally I have never been a big fan of vitamins taken as a supplement.  I prefer to get them in my diet.  The only vitamins I take at this point are Vitamin D3 and K2.

    I cut out Vitamin C because it is primarily an anti-oxidant and there have been recent studies that hint at the possiblity that too many anti-oxidants - when only taken as a supplement (but not from foods) - may actually promote the growth of certain cancers.  In particular the studies have centered on Vitamin E; Beta-Carotene; and (this one being new) N-Acetyl Cysteine (NAC).  I failed to list NAC as one other supplement that I have also stopped taking.

    Since I have only failed TKI's (Sutent and Inlyta) it could be argued that I have not explored all of the standard therapy options.  That is why my insurance company could say they will not cover Cabo until I try an mTOR.

    To be honest (and I know this will get me in trouble in many quarters) I am not anxious to subject myself to HD IL2.  Maybe in the future but right now I still prefer the more subtle approaches to stimulating my immune system.

    I do appreciate your brain-storming these various ideas.  I have spent a lot of time researching this disease and what might be the optimum approach to handle it.  But that does not mean I am right.  I am always questioning every decision I make.  In the end I may be wrong to try to strictly follow only the latest science but hopefully whatever I pursue will be useful for someone else if even to illuminate what not to do.

  • angec
    angec Member Posts: 924 Member
    Hi Neil.. thanks for the

    Hi Neil.. thanks for the explanation.  I think you are right on all points.

     

    This is the info i remember reading about Metforim for those not diabetic.  I am sure you have seen it all!

    http://www.lef.org/magazine/mag2012/nov2012_metformin-makes-headline-news_01.htm

     

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

    Hi Neil.. thanks for the

    Hi Neil.. thanks for the explanation.  I think you are right on all points.

     

    This is the info i remember reading about Metforim for those not diabetic.  I am sure you have seen it all!

    http://www.lef.org/magazine/mag2012/nov2012_metformin-makes-headline-news_01.htm

     

    HI All..!!  Well, it is my

    HI All..!!  Well, it is my turn to study for the next tests...  My Onc wants to try and use Contrast this time.. the first in almost two years..!  Wow, yes it is now 12 years since my surgery..!  I will up my water intake until I feel like a fish.. except I won't be ahem getting my excretions in it..  Surprised   I am pretty sure I know why.. and I agree.  "IF" the Inlyta has continued to shrink the Mets and "IF" some of the Mets are super tiny.. then my Onc wants to be able to properly see for sure.  My take is this will help decide on my doseage as well.  As long as there is some shrinkage or at least stability, then life is very good indeed..!!  I will take stability, and hope for shrinkage..  I have about a month before the testing..

    Be Well All..!!!

    Ron - Fired my racer up yesterday... terrorized the neighborhood... great fun..! Smile

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

    HI All..!!  Well, it is my

    HI All..!!  Well, it is my turn to study for the next tests...  My Onc wants to try and use Contrast this time.. the first in almost two years..!  Wow, yes it is now 12 years since my surgery..!  I will up my water intake until I feel like a fish.. except I won't be ahem getting my excretions in it..  Surprised   I am pretty sure I know why.. and I agree.  "IF" the Inlyta has continued to shrink the Mets and "IF" some of the Mets are super tiny.. then my Onc wants to be able to properly see for sure.  My take is this will help decide on my doseage as well.  As long as there is some shrinkage or at least stability, then life is very good indeed..!!  I will take stability, and hope for shrinkage..  I have about a month before the testing..

    Be Well All..!!!

    Ron - Fired my racer up yesterday... terrorized the neighborhood... great fun..! Smile

    Now...

    what's so terrifying about a sight challenged cancer patient buzzing around on a racing bike, SHEEEEEES, must be a bunch of couch spuds living by youWink Good luck on the scans, plenty of water before and after, you know the drill.

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

    Now...

    what's so terrifying about a sight challenged cancer patient buzzing around on a racing bike, SHEEEEEES, must be a bunch of couch spuds living by youWink Good luck on the scans, plenty of water before and after, you know the drill.

    Gary, thanks for the laugh..!

    Gary, thanks for the laugh..!  Yes there are a bunch of olde farts in my neighborhood... but then I did chose a time when many were at church.. Only a few close by here know of my Cancer.

    I got Kudos last summer that I was not "hollering" Cancer all over the race paddock area.  They all know I got it.. and many ask how I am doing.. but it was mentioned that they liked the fact that I was not on a Crusade of sorts.  

    On the race bike. well.. it is LOUD.. very loud.. and last time I did this little ride, there was an authoritative type person looking for me..... I spotted his official vehicle parked on the next road where he could see in to my garage..  Fun stuff..!!

    So, yes just finished two glasses of water.. more to follow...

    Take Care..!

    Ron

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

    Gary, thanks for the laugh..!

    Gary, thanks for the laugh..!  Yes there are a bunch of olde farts in my neighborhood... but then I did chose a time when many were at church.. Only a few close by here know of my Cancer.

    I got Kudos last summer that I was not "hollering" Cancer all over the race paddock area.  They all know I got it.. and many ask how I am doing.. but it was mentioned that they liked the fact that I was not on a Crusade of sorts.  

    On the race bike. well.. it is LOUD.. very loud.. and last time I did this little ride, there was an authoritative type person looking for me..... I spotted his official vehicle parked on the next road where he could see in to my garage..  Fun stuff..!!

    So, yes just finished two glasses of water.. more to follow...

    Take Care..!

    Ron

    OK, mid April is scan time

    OK, mid April is scan time here... I do expect good results..!  Most likely I am going to get contrast this time.. and just for good measure a Phlebotomy as well...  Time to get my review from the "Warden"..  Hoping for another 90 day pass...!!

    Be Well All..!!

    Ron

  • angec
    angec Member Posts: 924 Member
    GSRon said:

    OK, mid April is scan time

    OK, mid April is scan time here... I do expect good results..!  Most likely I am going to get contrast this time.. and just for good measure a Phlebotomy as well...  Time to get my review from the "Warden"..  Hoping for another 90 day pass...!!

    Be Well All..!!

    Ron

    Ron, i got good vibes... only

    Ron, i got good vibes... only great results for you!  <3

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

    Ron, i got good vibes... only

    Ron, i got good vibes... only great results for you!  <3

    Just dropped in...

    OK, for the "mature" folks around here... remember Kenny Rogers and the First Edition..??   Well, I never did drugs in college.. but many of us are making up for it now...  Here is an oldie song for sure...

    http://www.youtube.com/watch?v=Gfa6umSlR8A

    Ron

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

    Just dropped in...

    OK, for the "mature" folks around here... remember Kenny Rogers and the First Edition..??   Well, I never did drugs in college.. but many of us are making up for it now...  Here is an oldie song for sure...

    http://www.youtube.com/watch?v=Gfa6umSlR8A

    Ron

    Big Mouth Here

    Just a quick update... Friday evening I notice I had a sore spot in my mouth.. by Sunday, I had a few sore spots.. and very painful to the touch... Yes, mouth sores..  So, I e-mailed my Doctor, then later decided to make that phone call.  I got an "On Call" doctor and he quickly did the questioning... and sent off the perscription for the "Magic Mouthwash."  And of course instant relief..!    In hindsight I should not of waited so long... even 2 days makes a difference some times....  I am surprized that it took 2 months on Inlyta for this to show up... guess I am very lucky..!!

    Hope you all are doing well...

    Ron Smile

  • DMike
    DMike Member Posts: 259
    GSRon said:

    Big Mouth Here

    Just a quick update... Friday evening I notice I had a sore spot in my mouth.. by Sunday, I had a few sore spots.. and very painful to the touch... Yes, mouth sores..  So, I e-mailed my Doctor, then later decided to make that phone call.  I got an "On Call" doctor and he quickly did the questioning... and sent off the perscription for the "Magic Mouthwash."  And of course instant relief..!    In hindsight I should not of waited so long... even 2 days makes a difference some times....  I am surprized that it took 2 months on Inlyta for this to show up... guess I am very lucky..!!

    Hope you all are doing well...

    Ron Smile

    Checking In

    Hi Ron,

    Just checking in to see what condition your condition was in. Sorry to hear about the mouth sores. Sounds like "Magic Mouthwash" did its job. But I believe you've been on Inlyta longer than 2 months. You started before me and I've been on Inlyta for 3 months.

    I go for labs and a clinic visit on Thursday. This will be the first bloodwork for me since moving up to 10 mg 2X day. I hope my bilirubin will be okay. I'm doing okay at that dose, no bad side effects yet, except fatigue, knock on wood!

    David

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

    Checking In

    Hi Ron,

    Just checking in to see what condition your condition was in. Sorry to hear about the mouth sores. Sounds like "Magic Mouthwash" did its job. But I believe you've been on Inlyta longer than 2 months. You started before me and I've been on Inlyta for 3 months.

    I go for labs and a clinic visit on Thursday. This will be the first bloodwork for me since moving up to 10 mg 2X day. I hope my bilirubin will be okay. I'm doing okay at that dose, no bad side effects yet, except fatigue, knock on wood!

    David

    Hi David... nice catch... try

    Hi David... nice catch... try 6 months... sorry about that...  it is time for my 2nd scans...   So far the mouthwash helps... time for another rinse..  the stuff tastes just fine...!

    Ron

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

    Hi David... nice catch... try

    Hi David... nice catch... try 6 months... sorry about that...  it is time for my 2nd scans...   So far the mouthwash helps... time for another rinse..  the stuff tastes just fine...!

    Ron

    Saturday... even with a

    Saturday... even with a couple of mouth sores, Saturday was a blast.. check these pictures out...  http://photos.mercurynews.com/2014/03/29/photos-2104-clubmans-all-british-weekend-motorcycle-show-in-san-jose/#6

     

    Yes, the #6 picture is my bike...  Cool

     

    Ron

  • danbren2
    danbren2 Member Posts: 311
    GSRon said:

    Saturday... even with a

    Saturday... even with a couple of mouth sores, Saturday was a blast.. check these pictures out...  http://photos.mercurynews.com/2014/03/29/photos-2104-clubmans-all-british-weekend-motorcycle-show-in-san-jose/#6

     

    Yes, the #6 picture is my bike...  Cool

     

    Ron

    Great Scans!

    GSRon,

         Here's hoping and praying that your scans are great this month!

                                                                       Prayers for good health!

                                                                        Brenda

  • DMike
    DMike Member Posts: 259
    GSRon said:

    Saturday... even with a

    Saturday... even with a couple of mouth sores, Saturday was a blast.. check these pictures out...  http://photos.mercurynews.com/2014/03/29/photos-2104-clubmans-all-british-weekend-motorcycle-show-in-san-jose/#6

     

    Yes, the #6 picture is my bike...  Cool

     

    Ron

    Good luck!

    Ron,

    Good luck on your scans.

    I'm a big motorsports fan, so I loved the moto photos! Your bike is badass and a great photo from the IOM.

    Keep fighting, David

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    Scans

    My husbands scans are due in a couple weeks.  He has been taking Inlyta for 1 year!  Big time fatigue.  Decreased appetite and nausea successfully treated with meds.  Good luck to all of you on your followup appointments.

     

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

    Scans

    My husbands scans are due in a couple weeks.  He has been taking Inlyta for 1 year!  Big time fatigue.  Decreased appetite and nausea successfully treated with meds.  Good luck to all of you on your followup appointments.

     

    The best thing we can all do

    The best thing we can all do is keep on living..!  Thanks all for the kind words.. the Magic Mouthwash is working...  San Diego next week, scans the week after...

    Every day is a cause to celebrate... we wake up and see the sun... time to hoot and holler..!!

    Be Well All..!!

    Ron

  • Eskimo lily
    Eskimo lily Member Posts: 43
    GSRon said:

    The best thing we can all do

    The best thing we can all do is keep on living..!  Thanks all for the kind words.. the Magic Mouthwash is working...  San Diego next week, scans the week after...

    Every day is a cause to celebrate... we wake up and see the sun... time to hoot and holler..!!

    Be Well All..!!

    Ron

    Ron, that bike looks pretty

    Ron, that bike looks pretty cool! Thanks for sharing :)

    my mom had pretty nasty mouth sores when she was on afinitor and they prescribed an oral steroid rinse that really helped get rid of them quickly! It was a dexamethasone mouth rinse...I forget the dosages but I'm sure your onc will know about it! Magic mouth wash helped with the pain but he dexamethasone helped get rid of them. Hope this helps!

    mom just started on inlyta 3mgx2 2 weeks ago and so far (knock on wood) no side effects yet except for a little rise in blood pressure (140/80). 

    David, how did the blood work go on Thursday? Any improvement in your bilirubin??

  • NanoSecond
    NanoSecond Member Posts: 653

    Ron, that bike looks pretty

    Ron, that bike looks pretty cool! Thanks for sharing :)

    my mom had pretty nasty mouth sores when she was on afinitor and they prescribed an oral steroid rinse that really helped get rid of them quickly! It was a dexamethasone mouth rinse...I forget the dosages but I'm sure your onc will know about it! Magic mouth wash helped with the pain but he dexamethasone helped get rid of them. Hope this helps!

    mom just started on inlyta 3mgx2 2 weeks ago and so far (knock on wood) no side effects yet except for a little rise in blood pressure (140/80). 

    David, how did the blood work go on Thursday? Any improvement in your bilirubin??

    Heads up

    Always keep in mind that steroids will weaken the immune system.