Axitinib / Inlyta

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  • GSRon
    GSRon Member Posts: 1,303 Member

    Joining The Inlyta Club now

    Hey Kids,

    I guess I am the newest member of the Inlyta Club.  Here's hoping it doesn't suck.

    Background- Stage 4 Papillary RCC, 2009; Rad neph, IVC thrombectomy, lymph resection 2009.  Remove single lung met 2011. New lungs mets popping up here and there.   IL2 2012- failure (Boooo!), Votrient 2012-2013(Boooo! Hisssss!)  LY2875358 5 infusions (Booooo!)

    So the next deal is Inlyta, just got off the phone with the specialty pharmacy.  1 mg tabs, 3 tabs, 2x daily-- so 6 mg daily.  Will be trying some facets of Nanosecond's diet and supplements along with it.  I'm not into side effects-- I have golfing and skiing and rollerskating and dancing and stuff to do.Cool

    P.R. Inlyta is not too bad..

    P.R. Inlyta is not too bad.. in some ways easier than Votrient for me... only big negative is the Foot and Hand stuff...  but if you read above.. the only bad part is in between... major skin peel..

    But if this stuff works.. it is worth it..!!!!

    Good Luck..!!

    Ron Cool

  • garym
    garym Member Posts: 1,647

    Joining The Inlyta Club now

    Hey Kids,

    I guess I am the newest member of the Inlyta Club.  Here's hoping it doesn't suck.

    Background- Stage 4 Papillary RCC, 2009; Rad neph, IVC thrombectomy, lymph resection 2009.  Remove single lung met 2011. New lungs mets popping up here and there.   IL2 2012- failure (Boooo!), Votrient 2012-2013(Boooo! Hisssss!)  LY2875358 5 infusions (Booooo!)

    So the next deal is Inlyta, just got off the phone with the specialty pharmacy.  1 mg tabs, 3 tabs, 2x daily-- so 6 mg daily.  Will be trying some facets of Nanosecond's diet and supplements along with it.  I'm not into side effects-- I have golfing and skiing and rollerskating and dancing and stuff to do.Cool

    Go for it...

    Phoenix,

    Now that's the attitude we love around here, but don't forget pizza and beer ala fox!  ROCK ON!!!

  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    GSRon said:

    P.R. Inlyta is not too bad..

    P.R. Inlyta is not too bad.. in some ways easier than Votrient for me... only big negative is the Foot and Hand stuff...  but if you read above.. the only bad part is in between... major skin peel..

    But if this stuff works.. it is worth it..!!!!

    Good Luck..!!

    Ron Cool

    Skin peel- people pay good money for that

    GSRon, I thought the skin peel was part of the polyaloe vera problem.  Gee-willikers..... not looking forward to that.  Maybe I won't get it?  Many people complained of major skin peel with IL-2, but I don't recall that side effect.  Even so, I'm prepared to manage this monkey on my back.

  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    garym said:

    Go for it...

    Phoenix,

    Now that's the attitude we love around here, but don't forget pizza and beer ala fox!  ROCK ON!!!

    Mm- hmmm

    Pizza- check!

    Beer- check!

     

    Thanks!

  • GSRon
    GSRon Member Posts: 1,303 Member

    Mm- hmmm

    Pizza- check!

    Beer- check!

     

    Thanks!

    Ok, just had another

    Ok, just had another phlebotomy. Last one for a while. My blood numbers are now in range. Time to go home and start my weekend. Be well all. Ron

  • a.oakley
    a.oakley Member Posts: 32
    GSRon said:

    Ok, just had another

    Ok, just had another phlebotomy. Last one for a while. My blood numbers are now in range. Time to go home and start my weekend. Be well all. Ron

    input re inlyta

    FYI.  My husband started on 5 mg of Inlyta twice a day in April.  The scans in June showed no new sites and no growth.  We are dealing with bone mets.  His dose was increased to 7mg twice a day.  The goal is to get to 10 mg.  The scan in late September showed no evidence of metabolic activity!!!!  We asked "is it gone?".  They said "it shows no evidence of metabolic activity".  We said "did the cancer die?", and they said "it shows no evidence of metabolic activity".  No matter how we phrased it, we got the same answer.  There were no areas that "lit up" on the CT/PET scan.  We sat there in shock with this good news.  Kind of like PTSD.  We were numb.  So much bad news and finally something good.  He remains on 7mg.  We chose to not increase to 10 mg.  The side effects that he experienced were extreme exhaustion which was remedied with starting Ritalin.  He takes one pill each day and it truly helps him be awake and enjoy life and take care of the things he wants to do.  He also had diarrhea for about a week, which was treated with OTC Imodium.  Our next scans are in December.

  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    Still skipping through the daisies

    I am still at 3 mg of Inlyta 2xday, and the oncologist is not ready to move me to a higher dose yet.  So far, no side effects at this low dose except occasional runs to the restroom.  I haven't taken anything to curb it yet because it comes and goes.  I have even begun to feel better ==> I have a pain in my chest that of course, I swear is cancer pain, like ALL pain, and it is starting to subside. I had been doing some hacking at a few golf balls, so the doctor was not concerned about my pain and told me to take some Tylenol.  To me, the pain is not debilitating enough for drugs, so I haven't taken anything for it.

  • GSRon
    GSRon Member Posts: 1,303 Member

    Still skipping through the daisies

    I am still at 3 mg of Inlyta 2xday, and the oncologist is not ready to move me to a higher dose yet.  So far, no side effects at this low dose except occasional runs to the restroom.  I haven't taken anything to curb it yet because it comes and goes.  I have even begun to feel better ==> I have a pain in my chest that of course, I swear is cancer pain, like ALL pain, and it is starting to subside. I had been doing some hacking at a few golf balls, so the doctor was not concerned about my pain and told me to take some Tylenol.  To me, the pain is not debilitating enough for drugs, so I haven't taken anything for it.

    Phoenix.. thanks for your

    Phoenix.. thanks for your report.. I too have some slight intermittent diarrhea...  also some slight constipation.. so it kind of evens out..  I too take nothing to change the bathroom routine..

    Ron

  • toolman1
    toolman1 Member Posts: 44
    GSRon said:

    Phoenix.. thanks for your

    Phoenix.. thanks for your report.. I too have some slight intermittent diarrhea...  also some slight constipation.. so it kind of evens out..  I too take nothing to change the bathroom routine..

    Ron

    Hi Ron;

    I too have been on Inlya most of this year. I had issues @ 10mg. daily, so my Onc. cut the dosage to 5mg. daily and I still have issues. 

    BP, was thru the roof @ 10mg. but @ 5mg. I am taking 20-12.5 mg. of Benicar HCT. Like yourself, I also get headaches when the BP gets elevated, and dizzy, when it gets too low. Also, you haven't mentioned any issues with your Thyroid, which I am taking 50mcg. of Levothyroxin for daily, to help with dizziness. I too had extreme muscle soreness everywhere, and was very short of breath, so much so, the GP doc. thought I was having a heart attack. An ER visit, and Ultrasound proved otherwise. Unlike you, I have had no issues with skin peel, hair color change, or anything else. Just the diarrea, which comes and goes. I've had 15-25% reduction in met sizes while on the Inlyta, but this week, was told by the Onc. that if the health issues persist, he will entertain the idea of changing to something else. So it's gonna be a wait and see thing i guess. Best of luck to you on this stuff, and I will be watching you're progress. Gary

  • GSRon
    GSRon Member Posts: 1,303 Member
    toolman1 said:

    Hi Ron;

    I too have been on Inlya most of this year. I had issues @ 10mg. daily, so my Onc. cut the dosage to 5mg. daily and I still have issues. 

    BP, was thru the roof @ 10mg. but @ 5mg. I am taking 20-12.5 mg. of Benicar HCT. Like yourself, I also get headaches when the BP gets elevated, and dizzy, when it gets too low. Also, you haven't mentioned any issues with your Thyroid, which I am taking 50mcg. of Levothyroxin for daily, to help with dizziness. I too had extreme muscle soreness everywhere, and was very short of breath, so much so, the GP doc. thought I was having a heart attack. An ER visit, and Ultrasound proved otherwise. Unlike you, I have had no issues with skin peel, hair color change, or anything else. Just the diarrea, which comes and goes. I've had 15-25% reduction in met sizes while on the Inlyta, but this week, was told by the Onc. that if the health issues persist, he will entertain the idea of changing to something else. So it's gonna be a wait and see thing i guess. Best of luck to you on this stuff, and I will be watching you're progress. Gary

    No thyroid issues.. I have

    No thyroid issues.. I have plenty of issues as it is..!  So, for now my Polycythemia is in control.. 10 Phlebotomies whew.!  Hope I now go in to a maintenance mode.. that would be welcome.

    I have about 3 weeks until my next set of scans, then I will know how the Inlyta is doing.. I expect great scans..!

    Be Well All..!!

    Ron

  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    Another side effect just noted

    Body aches (muscle and joint aches and stiffness) are starting to kick in. At first, I thought it might be the years of running, dance class, and skiing combined with the cold weather settling in, but I missed a dose and the aching subsided that day.  When I got back to the dosing schedule, the aches came back the next day. I'm not taking anything for the pain.  It is debilitating when I get up in the morning, but a hot shower loosens things up and I am okay throughout the day.  

     

    I have a dry cough that sometimes gets so bad it causes me to be short of breath, but I found that humidity cures it quickly.  I now sleep with a humidifier in the room, and I am getting one for the office. Yesterday I tried a homeopathic remedy for the cough and it worked. 

     

    I have been going to a health spa weekly to use the rock salt and activated charcoal saunas, steam room, and jetted pools for 6-8 hours, and I feel like a million bucks when I leave.  My goal is to get weekly body massages when I go. 

     

    My BP is 107/70.  I am vegetarian (except salmon), I juice daily, eat no processed foods, no sugar, no refined oils, take flax oil mixed with cottage cheese daily, as well as Ubiquinol, Resveratrol, whey protein, Cal-Mag-Citrate, Psyllium husk, and Vitamin D; and Melatonin at night. I have taken various supplements off and on over the years, but I can actually stick to these because I feel the difference.  I sleep like a baby and I am very refreshed in the morning, despite the body aches.

  • GSRon
    GSRon Member Posts: 1,303 Member

    Another side effect just noted

    Body aches (muscle and joint aches and stiffness) are starting to kick in. At first, I thought it might be the years of running, dance class, and skiing combined with the cold weather settling in, but I missed a dose and the aching subsided that day.  When I got back to the dosing schedule, the aches came back the next day. I'm not taking anything for the pain.  It is debilitating when I get up in the morning, but a hot shower loosens things up and I am okay throughout the day.  

     

    I have a dry cough that sometimes gets so bad it causes me to be short of breath, but I found that humidity cures it quickly.  I now sleep with a humidifier in the room, and I am getting one for the office. Yesterday I tried a homeopathic remedy for the cough and it worked. 

     

    I have been going to a health spa weekly to use the rock salt and activated charcoal saunas, steam room, and jetted pools for 6-8 hours, and I feel like a million bucks when I leave.  My goal is to get weekly body massages when I go. 

     

    My BP is 107/70.  I am vegetarian (except salmon), I juice daily, eat no processed foods, no sugar, no refined oils, take flax oil mixed with cottage cheese daily, as well as Ubiquinol, Resveratrol, whey protein, Cal-Mag-Citrate, Psyllium husk, and Vitamin D; and Melatonin at night. I have taken various supplements off and on over the years, but I can actually stick to these because I feel the difference.  I sleep like a baby and I am very refreshed in the morning, despite the body aches.

    Hi All..!! I hope everyone is

    Hi All..!! I hope everyone is doing well..  Not much new to report here.. but next week at this time I wiill have had my Onc visit and know the results of the scans...  I will let you all know then...

    Ron

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

    Hi All..!! I hope everyone is

    Hi All..!! I hope everyone is doing well..  Not much new to report here.. but next week at this time I wiill have had my Onc visit and know the results of the scans...  I will let you all know then...

    Ron

    Fun Afternoon... Yes the fun

    Fun Afternoon... Yes the fun has begun.  Did my follow up with my Cardio Dr..  She gave me such a look when I told her about my PV. Plycymethia Vera...  Then she said no way...  then I told her my test results... she said "****"..! I kind of laughed.. then told her about the 10 Phlebotomies.. she shook her head..  OK.. so no other note worthy news..  Tomorrow is scan day... closer to knowing what is happening inside me...  No stress here...yet anyway...  

    OK you all can say I am a sikko.. finding it funny making a Dr lose it like that...  Cool..!!

    Be Well All..!!

    Ron

  • Srashedb
    Srashedb Member Posts: 482 Member
    GSRon said:

    Fun Afternoon... Yes the fun

    Fun Afternoon... Yes the fun has begun.  Did my follow up with my Cardio Dr..  She gave me such a look when I told her about my PV. Plycymethia Vera...  Then she said no way...  then I told her my test results... she said "****"..! I kind of laughed.. then told her about the 10 Phlebotomies.. she shook her head..  OK.. so no other note worthy news..  Tomorrow is scan day... closer to knowing what is happening inside me...  No stress here...yet anyway...  

    OK you all can say I am a sikko.. finding it funny making a Dr lose it like that...  Cool..!!

    Be Well All..!!

    Ron

    sending you good wishes on

    sending you good wishes on your scans.

    sarah

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

    sending you good wishes on

    sending you good wishes on your scans.

    sarah

    Hoo Yea.!

    Well time to celebrate a bit. Shrinkage is the word for today. But my P.V. Is a concern

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    GSRon said:

    Hoo Yea.!

    Well time to celebrate a bit. Shrinkage is the word for today. But my P.V. Is a concern

    I am good with shrinkage

    ...in this case of course! Wink So we can celebrate! (I am always good with that!)
    Now...I am really not good at the technical end of health....that is where I lean on the savvy members here. So can you explain a bit about the PV concern? Is there a plan of action? Does this mean no more cute nurses drawing your blood?

     

    Hugs,

    Jojo

  • GSRon
    GSRon Member Posts: 1,303 Member
    Jojo61 said:

    I am good with shrinkage

    ...in this case of course! Wink So we can celebrate! (I am always good with that!)
    Now...I am really not good at the technical end of health....that is where I lean on the savvy members here. So can you explain a bit about the PV concern? Is there a plan of action? Does this mean no more cute nurses drawing your blood?

     

    Hugs,

    Jojo

    Sorry for the short message,

    Sorry for the short message, I hate trying to type on my cell phone.  And more fun, my home computer has a virus, and it won't let me change my password..  So now I am using my work puter to give you all a proper update.

    Major shrinkage.. from 2 MM up to just over 1 CM..!  And there used to be a Met in my left Kidney "bed", the Votrient made it disappear. And it is still MIA..!  Plus my Liver is very happy on the Inlyta, so all that is great news..!!

    But the P.V. (Polycythemia Vera) is my Doctor's and my big concern.  I may have some heart - artery damage due to trying to pump that thick blood through my body.  The outward signs are tingly left fingers, the huge skin peel, and the red and blue fingers on both sides, oh yes and small headaches.  Inside my heart is enlarged along with the one artery, which is the big concern. I will ask to move up myheart echo gram to an ASAP.  The RCC won't matter if I pop a cork...

    My Hemotologist did a lot of tests on the extra blood I gave.. and we ruled out any connection to the Chemo drugs or the RCC.  This is totally a separate issue.  And so far no reason why I have such a bad case, compared to how the P.V. is usually found to be.  So yes I had another Plebotomy after my Onc appointment today.  Sadly no pretty nurse, I got the "guy" nurse.  I tried to get a swap, but no success.  You ladies here would of liked to have Terry poke you, I mean needle you, I mean hold your arm.. heh..   Actually Terry did pretty good.. go the deed done..  Looks like more Phlebotomies in my future.   I should also say, even though they use a pretty large needle, I am getting used to it.. not so bad...  I now have 3 doctors telling me I need to take the Amlodopine daily...  Time for me to listen.

    JoJo, thanks for the hugs.. I really enjoy them..!!  :)

     

    Ron

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    GSRon said:

    Sorry for the short message,

    Sorry for the short message, I hate trying to type on my cell phone.  And more fun, my home computer has a virus, and it won't let me change my password..  So now I am using my work puter to give you all a proper update.

    Major shrinkage.. from 2 MM up to just over 1 CM..!  And there used to be a Met in my left Kidney "bed", the Votrient made it disappear. And it is still MIA..!  Plus my Liver is very happy on the Inlyta, so all that is great news..!!

    But the P.V. (Polycythemia Vera) is my Doctor's and my big concern.  I may have some heart - artery damage due to trying to pump that thick blood through my body.  The outward signs are tingly left fingers, the huge skin peel, and the red and blue fingers on both sides, oh yes and small headaches.  Inside my heart is enlarged along with the one artery, which is the big concern. I will ask to move up myheart echo gram to an ASAP.  The RCC won't matter if I pop a cork...

    My Hemotologist did a lot of tests on the extra blood I gave.. and we ruled out any connection to the Chemo drugs or the RCC.  This is totally a separate issue.  And so far no reason why I have such a bad case, compared to how the P.V. is usually found to be.  So yes I had another Plebotomy after my Onc appointment today.  Sadly no pretty nurse, I got the "guy" nurse.  I tried to get a swap, but no success.  You ladies here would of liked to have Terry poke you, I mean needle you, I mean hold your arm.. heh..   Actually Terry did pretty good.. go the deed done..  Looks like more Phlebotomies in my future.   I should also say, even though they use a pretty large needle, I am getting used to it.. not so bad...  I now have 3 doctors telling me I need to take the Amlodopine daily...  Time for me to listen.

    JoJo, thanks for the hugs.. I really enjoy them..!!  :)

     

    Ron

    Thank you for the explanation

    Thank you for the explanation in layman's terms! You have a lot on your plate, Mr. Ron. But you are a fighting man and I like your style! I hope you have lots of pretty nurses to help ease the way!

    But please take you Amiodopine daily!!

    Big Hugs,

    Jojo

  • DMike
    DMike Member Posts: 259
    GSRon said:

    Sorry for the short message,

    Sorry for the short message, I hate trying to type on my cell phone.  And more fun, my home computer has a virus, and it won't let me change my password..  So now I am using my work puter to give you all a proper update.

    Major shrinkage.. from 2 MM up to just over 1 CM..!  And there used to be a Met in my left Kidney "bed", the Votrient made it disappear. And it is still MIA..!  Plus my Liver is very happy on the Inlyta, so all that is great news..!!

    But the P.V. (Polycythemia Vera) is my Doctor's and my big concern.  I may have some heart - artery damage due to trying to pump that thick blood through my body.  The outward signs are tingly left fingers, the huge skin peel, and the red and blue fingers on both sides, oh yes and small headaches.  Inside my heart is enlarged along with the one artery, which is the big concern. I will ask to move up myheart echo gram to an ASAP.  The RCC won't matter if I pop a cork...

    My Hemotologist did a lot of tests on the extra blood I gave.. and we ruled out any connection to the Chemo drugs or the RCC.  This is totally a separate issue.  And so far no reason why I have such a bad case, compared to how the P.V. is usually found to be.  So yes I had another Plebotomy after my Onc appointment today.  Sadly no pretty nurse, I got the "guy" nurse.  I tried to get a swap, but no success.  You ladies here would of liked to have Terry poke you, I mean needle you, I mean hold your arm.. heh..   Actually Terry did pretty good.. go the deed done..  Looks like more Phlebotomies in my future.   I should also say, even though they use a pretty large needle, I am getting used to it.. not so bad...  I now have 3 doctors telling me I need to take the Amlodopine daily...  Time for me to listen.

    JoJo, thanks for the hugs.. I really enjoy them..!!  :)

     

    Ron

    Update

    Hi Ron,

    That's great news on the success with the Inlyta. As you know, I'm particularly interested in how your liver is reacting to Inlyta. Super happy to see your liver numbers are good.

    I wish you luck with the P.V. Like you said, getting that figured out is super important!

    I saw my oncologist yesterday and after 2 weeks off of Votrient, my bilirubin is back down to 1.6, that's pretty much my norm, so we start Inlyta next week. I hope my liver behaves too!

    David

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

    Update

    Hi Ron,

    That's great news on the success with the Inlyta. As you know, I'm particularly interested in how your liver is reacting to Inlyta. Super happy to see your liver numbers are good.

    I wish you luck with the P.V. Like you said, getting that figured out is super important!

    I saw my oncologist yesterday and after 2 weeks off of Votrient, my bilirubin is back down to 1.6, that's pretty much my norm, so we start Inlyta next week. I hope my liver behaves too!

    David

    Hi David.. I expect that you

    Hi David.. I expect that you will have similar good results. My Bilirubin actually went down since my last test. So guess what.. My cousin has Gilbert,s as well. Found that out today. Keep us posted. Ron