Inylta and scanxiety

Footstomper
Footstomper Member Posts: 1,237 Member
in Kidney Cancer #1

I hate Inlyta. or rather, I hate its side effects more:sore feet, sore hands, achy aches, problems on the poop deck, sore mouth. fatigue. My hormones are so mixed up they think I'm a post-menstrual woman!
So I went into the Oncs office full of hope, he had mumbled about a trial of something new

So I go in with hope of Getting rid of this horrible medicine and what do I learn? All my lumps have shrunk by a third and the small fry have disappearred entirely.

I guess I'll be staying with this drug for a while.Smile

Comments

  • APny
    APny Member Posts: 1,995 Member
    #2
    Oh that such good news! I'm

    Oh that such good news! I'm really happy for you. Is there a chance that once your body is accustomed to it the side effects will lessen or go away?  

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #3
    APny said:

    Oh that such good news! I'm

    Oh that such good news! I'm really happy for you. Is there a chance that once your body is accustomed to it the side effects will lessen or go away?  

    Inlyta

    I dont know. I honestly hate its all encompassng low level or high level irritation. But 1/3 reduction in tumours? I must be the happiest post menapausal male to ever flood the sewerage system withe ostrogen.

  • Shecka1121
    Shecka1121 Member Posts: 117 Member
    #4
    Footstomper said:

    Inlyta

    I dont know. I honestly hate its all encompassng low level or high level irritation. But 1/3 reduction in tumours? I must be the happiest post menapausal male to ever flood the sewerage system withe ostrogen.

    Great to hear about your

    Great to hear about your results.  You sure have humor about the side effects.  Heres to hoping the side effects lesson and you get the same on going results :)

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #5
    Congratulations.
    What dosage

    Congratulations.

    What dosage are you taking?

    Do you know why some people have more or less side effects?  Maybe you could lower the dose, or take a week off.

    My husband takes 7 mg twice a day.  Over 2 years now.  Yeah!

  • foxhd
    foxhd Member Posts: 3,181 Member
    #6
    a_oaklee said:

    Congratulations.
    What dosage

    Congratulations.

    What dosage are you taking?

    Do you know why some people have more or less side effects?  Maybe you could lower the dose, or take a week off.

    My husband takes 7 mg twice a day.  Over 2 years now.  Yeah!

    Good for you!

    Nice! Stomps. I'll venture to say the side effects annoyance factor has just dropped a ton. It can be like musical chairs. As long as they keep having enough chairs for us, life is good. I'm glad that there is always another treatment out there.

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #7
    a_oaklee said:

    Congratulations.
    What dosage

    Congratulations.

    What dosage are you taking?

    Do you know why some people have more or less side effects?  Maybe you could lower the dose, or take a week off.

    My husband takes 7 mg twice a day.  Over 2 years now.  Yeah!

    Inylta

    2mg twice a day. But the side efects are a bugger. I dont think anyone knows why. But Fox is right they are easier to deal with when the drug is making the tumours smaller.

  • Srashedb
    Srashedb Member Posts: 482 Member
    #8
    Footstomper said:

    Inylta

    2mg twice a day. But the side efects are a bugger. I dont think anyone knows why. But Fox is right they are easier to deal with when the drug is making the tumours smaller.

    Great news!!!

    it is easy for me to say that the side effects are worth it but, shrinkage is great! You could have been enduring these horrific side effects and discovered that the meds didn't work.

    Sarah

  • Nana4life
    Nana4life Member Posts: 78 Member
    #9
    Drug mugger

    So happy for you!!! I think your sense of humor is just as important as the drugs in shrinking those buggers. 

    Have you ever considered some supplements to reduce side effects? I read a book once called drup muggers. It basically would tell you what nutrients certain prescription drugs deplete your body of. I'm sure it wouldn't hurt. 

    For example probiotics for digestive issues, magnesium for aches , b vitamins for energy etc. 

    Im a huge believer in the medicinal power of food!

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #10
    Nana4life said:

    Drug mugger

    So happy for you!!! I think your sense of humor is just as important as the drugs in shrinking those buggers. 

    Have you ever considered some supplements to reduce side effects? I read a book once called drup muggers. It basically would tell you what nutrients certain prescription drugs deplete your body of. I'm sure it wouldn't hurt. 

    For example probiotics for digestive issues, magnesium for aches , b vitamins for energy etc. 

    Im a huge believer in the medicinal power of food!

    Way ahead of you!

    Lots of mushrooms, everythin down to Opium.

  • Allochka
    Allochka Member Posts: 1,074 Member
    #11
    Footstomper said:

    Way ahead of you!

    Lots of mushrooms, everythin down to Opium.

    Wow !!!! Congratulations!!!

    Wow !!!! Congratulations!!! :-) 

  • NewDay
    NewDay Member Posts: 272
    #12
    Allochka said:

    Wow !!!! Congratulations!!!

    Wow !!!! Congratulations!!! :-) 

    Consider a break

    Footstomper,

    Congratulations on your great results.  I have gotten shrinkage and then stability for over a year on Inlyta, but it looks like that might be coming to an end.  After a few months on it, the side effects were really affecting my QOL, so my doctor suggested doing 6 weeks on, 1 week off.  It is not standard protocol, but only because that regimen has not been tested in trials.  It has worked great for me.  My side effects disappear after only a couple of days and don't get really bad until about week 4 back on.  If you are willing to take the rsk in order to get a few weeks of relief,  you might dscuss it wth your doc.  It really helps to get through the rough days when you know you will a get a break.

    Good Luck,

    Kathy

  • cheatinlil
    cheatinlil Member Posts: 197
    #13
    NewDay said:

    Consider a break

    Footstomper,

    Congratulations on your great results.  I have gotten shrinkage and then stability for over a year on Inlyta, but it looks like that might be coming to an end.  After a few months on it, the side effects were really affecting my QOL, so my doctor suggested doing 6 weeks on, 1 week off.  It is not standard protocol, but only because that regimen has not been tested in trials.  It has worked great for me.  My side effects disappear after only a couple of days and don't get really bad until about week 4 back on.  If you are willing to take the rsk in order to get a few weeks of relief,  you might dscuss it wth your doc.  It really helps to get through the rough days when you know you will a get a break.

    Good Luck,

    Kathy

    Thanks for sharing

    Thanks for sharing footstomper. My husband is on inlyta too. We go in for scans in October to see if it's working. He is on short term disability now. We are wondering if he can tolerate the side effects and get back to work in October. 

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #14
    cheatinlil said:

    Thanks for sharing

    Thanks for sharing footstomper. My husband is on inlyta too. We go in for scans in October to see if it's working. He is on short term disability now. We are wondering if he can tolerate the side effects and get back to work in October. 

    Nice to hear some good news

    Nice to hear some good news for a change!! Yay!!!

    Hugs

    Jojo

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #15
    Jojo61 said:

    Nice to hear some good news

    Nice to hear some good news for a change!! Yay!!!

    Hugs

    Jojo

    I was fed up with people dying

    So I decided to do a bit of living instead. anyone fancy joining me?

  • Positive_Mental_Attitude
    Positive_Mental_Attitude Member Posts: 454
    #16
    Footstomper said:

    I was fed up with people dying

    So I decided to do a bit of living instead. anyone fancy joining me?

    You have a terrific sense of

    You have a terrific sense of humor.  My attitude is why cry or be sad when laughing is so much more fun.  Today I received extremely bad news for my business, and the person delivering the news to me remarked that I did not seem upset--and I thought that after everything I have been through in the last 2 years, losing business was the least of my worries.  I am a live, I am feeling great, and I have a wonderful wife and children.  It is all that matters.  I'll find more business, or I will work less, which is what I have been striving to do since my diagnosis last year.

  • Positive_Mental_Attitude
    Positive_Mental_Attitude Member Posts: 454
    #17
    What terrific news.  You have

    What terrific news.  You have brightened an otherwise **** day.

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #18
    NewDay said:

    Consider a break

    Footstomper,

    Congratulations on your great results.  I have gotten shrinkage and then stability for over a year on Inlyta, but it looks like that might be coming to an end.  After a few months on it, the side effects were really affecting my QOL, so my doctor suggested doing 6 weeks on, 1 week off.  It is not standard protocol, but only because that regimen has not been tested in trials.  It has worked great for me.  My side effects disappear after only a couple of days and don't get really bad until about week 4 back on.  If you are willing to take the rsk in order to get a few weeks of relief,  you might dscuss it wth your doc.  It really helps to get through the rough days when you know you will a get a break.

    Good Luck,

    Kathy

    THANKS

    I will have a word with the Onc about taking weeks  off

  • foroughsh
    foroughsh Member Posts: 779 Member
    #19
    Footstomper said:

    THANKS

    I will have a word with the Onc about taking weeks  off

    It's wonderful news,

    It's wonderful news, congratulations!!!!!!!

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #20
    cheatinlil said:

    Thanks for sharing

    Thanks for sharing footstomper. My husband is on inlyta too. We go in for scans in October to see if it's working. He is on short term disability now. We are wondering if he can tolerate the side effects and get back to work in October. 

    Cheatinil

    Good luck for october

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