Axitinib / Inlyta

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

    1st Inlyta Scan

    This is the first scan since I started Inlyta but it includes a 26 day span without any meds while I moved off of Votrient and waited for insurance approval for Inlyta. So, that makes 3 months since the last scan and roughly 2 months on Inlyta.

    1. Bilirubin is 1.5, that's GREAT for me! ALT and AST are also great! My liver and Gilbert's Syndrome seem to like Inlyta.
    2. Abdomen and pelvis scan still remains clear of mets.
    3. Lung mets are mixed. They follow 3 mets as markers, there are many more smaller ones but here are the 3 markers:
        A. 9mm x 6mm - is now 9 x 8mm
        B. 1.4 cm x 1.2 cm - is now 1.2 cm x 1.0 cm - this one was ACTIVELY growing in the fall
        C. 1.1 cm x 8mm - is now 1.2 X 1.2 cm
    Those are in the 20% margin of error status, so he considers it stability especially with a month without meds.

    Echocardiogram was good!

    We are raising the meds from 7mg 2x per day to 10 mg 2x per day (max dose for Inlyta). We'll see what side effects that brings. I'm not having any side effects except fatigue now, so we will see. I'm super happy that my liver is tolerating Inlyta.

    I feel better than I have felt since IL2, we'll see how things go with the dosage increase...Celebratory long bike ride today!

    David

     

    Hi David, I think your

    Hi David, I think your results are very good. Especially when you consider that the one month of no drugs allowed your Mets to grow and you have only been on Inlyta for two months. I have a hunch your next scans show shrinkage. And your liver is happy as well. huzzah.. Ron

  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    The coughing problem

    I forgot to mention the onc believes the cough is caused by the location of the tumors in my lung.  He said cough was not a common side effect of Inlyta, but I read with my own two eyes... and I read pretty doggone good, contact lens prescription is up to date, too..... anyhoo--I read cough is a side effect.  Needless to say, I've been off the Inlyta at least 3 weeks and that cough is still hanging around, and now it comes with lots of mucous and post nasal drip.  I noticed yesterday that when I juiced pineapple, ginger, lemon and carrots, the cough and post nasal drip slowed down.

    Well, I'll kick myself out of the Inlyta thread since I am no longer on the drug and can't offer any insight.  I'll probably start a sutent / gemcitabine thread once it gets underway.  That combo is a trial, but I will be doing it off trial.

  • a_oaklee
    a_oaklee Member Posts: 566 Member

    The coughing problem

    I forgot to mention the onc believes the cough is caused by the location of the tumors in my lung.  He said cough was not a common side effect of Inlyta, but I read with my own two eyes... and I read pretty doggone good, contact lens prescription is up to date, too..... anyhoo--I read cough is a side effect.  Needless to say, I've been off the Inlyta at least 3 weeks and that cough is still hanging around, and now it comes with lots of mucous and post nasal drip.  I noticed yesterday that when I juiced pineapple, ginger, lemon and carrots, the cough and post nasal drip slowed down.

    Well, I'll kick myself out of the Inlyta thread since I am no longer on the drug and can't offer any insight.  I'll probably start a sutent / gemcitabine thread once it gets underway.  That combo is a trial, but I will be doing it off trial.

    been away awhile

    I've been away for awhile.  Sorry.  So much is going on in our lives.  My husbands MRI was negative.  Woo-Hoo!  He continues on 7 mg of Inlyta.  His biggest complaint is exhaustion and it certainly is a difficult thing to live with.  If there is a good active day, then it is followed by 3 days of incredible exhaustion.  I really wonder about how other people manage to be able to bike ride, cycle ride, run, weight lift etc..  I'm so happy for those who are able to enjoy activities like that.  For us, a little walk is the best we can do.  And dont get me wrong...I am thankful for that too.  The next scan will be the beginning of April.  Feels like a vacation, the time between scans.

    Phoenix:  I'm so sorry to hear about the change in your condition, but I'm truly hoping that the new drug you are going to be on works for you.  That drug was mentioned by our oncologist as a future choice also.  It makes sense that your cough could be from the congestion in your lungs.  However, I read, the same as you, that a cough is a side effect of Inlyta.  I guess not a common one, but a side effect nonetheless.   Would you mind sharing why your dosage of Inlyta wasn't increased?  I would like to understand.  Our oncologist is trying to get my husband to 10 mg as the best dosage.  My husband has chosen to stay at 7mg.  He doesn't like the side effects at 7mg and figures it would be that much worse at 10mg.  Was it the same for you?  I do hope you let us know how you are doing.  Maybe start a thread for the new medication that you are on.  I hope you tolerate the new plan well and have improved scans.

    Nano:  How are you doing?  I hope your hip pain is gone now, and that you are still feeling really well.  I know you are on  7 mg.  Do you plan on taking 10mg? 

    David:  That's a great scan result!  That was only two months of being on Inlyta.  Please post how you are tolerating the 10 mg dosage.  I hope you continue to feel well and enjoy your bike riding.

     

     

  • DMike
    DMike Member Posts: 259

    The coughing problem

    I forgot to mention the onc believes the cough is caused by the location of the tumors in my lung.  He said cough was not a common side effect of Inlyta, but I read with my own two eyes... and I read pretty doggone good, contact lens prescription is up to date, too..... anyhoo--I read cough is a side effect.  Needless to say, I've been off the Inlyta at least 3 weeks and that cough is still hanging around, and now it comes with lots of mucous and post nasal drip.  I noticed yesterday that when I juiced pineapple, ginger, lemon and carrots, the cough and post nasal drip slowed down.

    Well, I'll kick myself out of the Inlyta thread since I am no longer on the drug and can't offer any insight.  I'll probably start a sutent / gemcitabine thread once it gets underway.  That combo is a trial, but I will be doing it off trial.

    Combo Info

    Hi Phoenix,

    Please start a thread on the sutent/gemcitabine meds. I'm interested and I'm sure many others are too. Also, no need to leave this thread. You have a lot of experience to share. I wish you the best wiith sutent/gemcitabine.

     

    a_oaklee,

    Thanks and I'll post on how things are going on 10mg. 3 days in and all is well.

    David

  • NanoSecond
    NanoSecond Member Posts: 653
    a_oaklee said:

    been away awhile

    I've been away for awhile.  Sorry.  So much is going on in our lives.  My husbands MRI was negative.  Woo-Hoo!  He continues on 7 mg of Inlyta.  His biggest complaint is exhaustion and it certainly is a difficult thing to live with.  If there is a good active day, then it is followed by 3 days of incredible exhaustion.  I really wonder about how other people manage to be able to bike ride, cycle ride, run, weight lift etc..  I'm so happy for those who are able to enjoy activities like that.  For us, a little walk is the best we can do.  And dont get me wrong...I am thankful for that too.  The next scan will be the beginning of April.  Feels like a vacation, the time between scans.

    Phoenix:  I'm so sorry to hear about the change in your condition, but I'm truly hoping that the new drug you are going to be on works for you.  That drug was mentioned by our oncologist as a future choice also.  It makes sense that your cough could be from the congestion in your lungs.  However, I read, the same as you, that a cough is a side effect of Inlyta.  I guess not a common one, but a side effect nonetheless.   Would you mind sharing why your dosage of Inlyta wasn't increased?  I would like to understand.  Our oncologist is trying to get my husband to 10 mg as the best dosage.  My husband has chosen to stay at 7mg.  He doesn't like the side effects at 7mg and figures it would be that much worse at 10mg.  Was it the same for you?  I do hope you let us know how you are doing.  Maybe start a thread for the new medication that you are on.  I hope you tolerate the new plan well and have improved scans.

    Nano:  How are you doing?  I hope your hip pain is gone now, and that you are still feeling really well.  I know you are on  7 mg.  Do you plan on taking 10mg? 

    David:  That's a great scan result!  That was only two months of being on Inlyta.  Please post how you are tolerating the 10 mg dosage.  I hope you continue to feel well and enjoy your bike riding.

     

     

    Inlyta & me

    Well right now I am mostly scanxious.  I go in for my next full-body nuclear bone scan followed by a CT-scan of the Abdomen/Chest/Pelvis with contrast tomorrow.  I won't hear the results until Thursday...

    But if it is working I plan to suggest that we go up to 8mg x2 next.  Slowly making my way up to 10mg x2 if possible.  The only major side effect I have experienced so far is that my voice is very hoarse.

    Regardless, I will let you know how it is really going in a few daze...

  • garym
    garym Member Posts: 1,647

    Inlyta & me

    Well right now I am mostly scanxious.  I go in for my next full-body nuclear bone scan followed by a CT-scan of the Abdomen/Chest/Pelvis with contrast tomorrow.  I won't hear the results until Thursday...

    But if it is working I plan to suggest that we go up to 8mg x2 next.  Slowly making my way up to 10mg x2 if possible.  The only major side effect I have experienced so far is that my voice is very hoarse.

    Regardless, I will let you know how it is really going in a few daze...

    Inlyta...

    Good luck tomorrow Neil, sending good vibes your way!

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

    Combo Info

    Hi Phoenix,

    Please start a thread on the sutent/gemcitabine meds. I'm interested and I'm sure many others are too. Also, no need to leave this thread. You have a lot of experience to share. I wish you the best wiith sutent/gemcitabine.

     

    a_oaklee,

    Thanks and I'll post on how things are going on 10mg. 3 days in and all is well.

    David

    Nano

    Good luck Nano! You're due!

  • NanoSecond
    NanoSecond Member Posts: 653
    garym said:

    Inlyta...

    Good luck tomorrow Neil, sending good vibes your way!

    Thanks

    Many thanks Gary and Fox.  Greatly appreciated.

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

    Nano

    Good luck Nano! You're due!

    Yo Nano guy... good luck, but

    Yo Nano guy... good luck, but I am betting you get good results..!  See you in Sunny Eggo..!

    Ron

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

    Yo Nano guy... good luck, but

    Yo Nano guy... good luck, but I am betting you get good results..!  See you in Sunny Eggo..!

    Ron

    Hey...

    Leggo my EggoWink

  • NanoSecond
    NanoSecond Member Posts: 653
    GSRon said:

    Yo Nano guy... good luck, but

    Yo Nano guy... good luck, but I am betting you get good results..!  See you in Sunny Eggo..!

    Ron

    Looking forward to it

    Looking forward to it Ron!

    But I am right coast guy.  So is that how San Diego is pronounced out there?  I've got a lot to learn and so little time...

    Thanks for the words of encouragement.  I find Inlyta to be a very strange drug.  I have no idea if it is working on my liver mets but, unlike Sutent, it clearly was not controlling my bone mets.  At least it wasn't at the 5mg x2 dosage.  So I am a bit pessimistic.  Anyway, I'll find out soon enough.

  • a_oaklee
    a_oaklee Member Posts: 566 Member

    Inlyta & me

    Well right now I am mostly scanxious.  I go in for my next full-body nuclear bone scan followed by a CT-scan of the Abdomen/Chest/Pelvis with contrast tomorrow.  I won't hear the results until Thursday...

    But if it is working I plan to suggest that we go up to 8mg x2 next.  Slowly making my way up to 10mg x2 if possible.  The only major side effect I have experienced so far is that my voice is very hoarse.

    Regardless, I will let you know how it is really going in a few daze...

    thinking of you

    Neil,  I will be thinking of you.  I have this feeling that you are most definitely going to have great results!  Think positive re scans! 

    I do appreciate Neil that you tend to be precise in answers that you give.  For instance, you wrote 8 mg X2.  I am going to try to be better at that myself.  The 7 mg my husband takes is indeed twice a day.

    When you feel like it Neil, could you please briefly tell me why the fullbody nuclear bone scan and a CT with contrast is your choice for follow-up scans.  My hb has a PET/CT with contrast done of chest abdomen and pelvis.  What is the advantage or reasoning or differences in the follow-up scan choices please? 

    My hb's voice is hoarse too.  He's unhappy about it.  We haven't been offered anything that can help with it other than a symptom specialist said perhaps a lozenge (of some sort) would be helpful.  ?  It didn't help.  We do notice that the quality of his voice is better in the morning, and when he needs to sound his best (business), he has water nearby.  Kind of helps it from getting too raspy.  If you come up with anything helpful, please let me know.

    All of you are in my thoughts and my prayers. 

    Annie

     

  • NanoSecond
    NanoSecond Member Posts: 653
    a_oaklee said:

    thinking of you

    Neil,  I will be thinking of you.  I have this feeling that you are most definitely going to have great results!  Think positive re scans! 

    I do appreciate Neil that you tend to be precise in answers that you give.  For instance, you wrote 8 mg X2.  I am going to try to be better at that myself.  The 7 mg my husband takes is indeed twice a day.

    When you feel like it Neil, could you please briefly tell me why the fullbody nuclear bone scan and a CT with contrast is your choice for follow-up scans.  My hb has a PET/CT with contrast done of chest abdomen and pelvis.  What is the advantage or reasoning or differences in the follow-up scan choices please? 

    My hb's voice is hoarse too.  He's unhappy about it.  We haven't been offered anything that can help with it other than a symptom specialist said perhaps a lozenge (of some sort) would be helpful.  ?  It didn't help.  We do notice that the quality of his voice is better in the morning, and when he needs to sound his best (business), he has water nearby.  Kind of helps it from getting too raspy.  If you come up with anything helpful, please let me know.

    All of you are in my thoughts and my prayers. 

    Annie

     

    PET vs CT

    Hi Annie.  Thank you very much for those kind words of encouragement.

    I don't have any solution for relieving the hoarse voice.  My feeble understanding is that this may be due to a restriction of Nitric Oxide production to the vocal cords.  If so it would be similar to what is behind Hand-Foot Syndrome (for those taking Sutent).

    The PET scan is based on the Warburg Effect which was discovered by Dr. Otto Warburg starting in the mid 1920's.  He was the first to realize that all tumors have dysfunctional cell metabolism.  In particular he showed that many tumors derive most of their energy by the fermentation of glucose by the process known as aerobic glycolysis.  This process does not utilize any molecular oxygen at all.  It is one of the most primitive ways that cells can derive energy (it's how all bacteria derive their energy, for example).  However, it is extremely inefficient.  To get the very same amount of energy that any normal cell can derive through the standard respiration of oxygen (in the process known as oxidative phosphorylation) the tumor cell must consume far more glucose.  It most cases it can be up to 30 to 50 times as much.  Regardless, the PET scan relies on this fact and just looks for any tissues that are drinking up excess glucose.  These areas are then termed "metabolically active".

    Unfortunately, most renal cancers (and prostate for that matter) are not very avid for glucose.  Why?  Because they are usually slow growing but more significantly because they can derive energy from the fermentation of nutrients other than glucose.  They can also ferment certain amino acids.

    So the bottom line is that a PET scan may fail to spot all the mischieve that renal cancer may be up to in one's body.  The CT scan does not suffer from that limitation.  The full body nuclear bone scan is not a PET scan either.  It works by injecting and tracking a radioactive substance (not glucose based) that is slowly absorbed by the bones.  Active lesion areas will "light up" where there is unusual activity - be it bone growth or destruction (lytic lesions).

    Hope that makes sense.

    Best wishes,

    -N

  • DMike
    DMike Member Posts: 259
    Good Scan

    Good luck tomorrow Neil!

    David

  • NanoSecond
    NanoSecond Member Posts: 653
    DMike said:

    Good Scan

    Good luck tomorrow Neil!

    David

    Thank you

    Thanks David.  About to depart in 5 minutes...

  • GSRon
    GSRon Member Posts: 1,303 Member

    Looking forward to it

    Looking forward to it Ron!

    But I am right coast guy.  So is that how San Diego is pronounced out there?  I've got a lot to learn and so little time...

    Thanks for the words of encouragement.  I find Inlyta to be a very strange drug.  I have no idea if it is working on my liver mets but, unlike Sutent, it clearly was not controlling my bone mets.  At least it wasn't at the 5mg x2 dosage.  So I am a bit pessimistic.  Anyway, I'll find out soon enough.

    Neil, good luck on the

    Neil, good luck on the scans..   OK, I looked at the revised Advocate/Patient schedule..  They are going to work my you know what off..!  It starts early morning and goes to late night.!  There is a lot going on there for sure..!  

    Later..

    Ron

  • NanoSecond
    NanoSecond Member Posts: 653
    GSRon said:

    Neil, good luck on the

    Neil, good luck on the scans..   OK, I looked at the revised Advocate/Patient schedule..  They are going to work my you know what off..!  It starts early morning and goes to late night.!  There is a lot going on there for sure..!  

    Later..

    Ron

    AACR 2014

    Well now you know why I decided to pay my way.  Believe me, it is totally impossible for anyone to digest this conference in one pass.  Every single day there are multiple sessions going on all at the same time and starting some days as early as 7am and some days going past 9pm.  It is lunacy.  The only solution is to choose which you will attend as best you can and then watch everything else that was missed after the conference is ended (via Internet access for the next several months).  In fact I still haven't finished viewing all the sessions from last year...

    I do hope you and I get a chance to share a dinner or two though...

  • a_oaklee
    a_oaklee Member Posts: 566 Member

    Thank you

    Thanks David.  About to depart in 5 minutes...

    me too

    Hey Neil,  I wanted to add my good luck wishes too! 

    And of course, ask a question....does anyone know how soon a medication is supposed to show some effect?  And does it differ from med to med?    My husband originally took Pazo.. for 6 weeks and because of no response at the 6 week mark he was switched to Affinitor.  I remember wondering if they gave it enough time to work.

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

    me too

    Hey Neil,  I wanted to add my good luck wishes too! 

    And of course, ask a question....does anyone know how soon a medication is supposed to show some effect?  And does it differ from med to med?    My husband originally took Pazo.. for 6 weeks and because of no response at the 6 week mark he was switched to Affinitor.  I remember wondering if they gave it enough time to work.

    Yes Neil, we will meet up...

    Yes Neil, we will meet up... I will have my cell phone..!  

    Ron

  • NanoSecond
    NanoSecond Member Posts: 653
    a_oaklee said:

    me too

    Hey Neil,  I wanted to add my good luck wishes too! 

    And of course, ask a question....does anyone know how soon a medication is supposed to show some effect?  And does it differ from med to med?    My husband originally took Pazo.. for 6 weeks and because of no response at the 6 week mark he was switched to Affinitor.  I remember wondering if they gave it enough time to work.

    How soon?

    Great question.  But I not aware that there is any published suggested time frame for these various meds to start working.  What seems to be common is to wait anywhere from one month to three after changing before undergoing the next set of CT scans to see what the results are.

    I can say that my personal experience taking Sutent is that it went to work within about a week.  That is to say, my bone met pain disappeared about one week after I first started taking it.  But that was at a point in time where all I had to deal with were bone mets which generated pain when not controlled.

    But now I have no idea how to judge Inlyta since I am also relying on it to control liver mets - which are not painful at all.