IL-2 failed; starting Votrient

thaxter
thaxter Member Posts: 124

After two weeks of IL-2 in March and one week in August 2014 my last two scans have shown some progression so we are not waiting around anymore.  Doc prescribed Votrient and the nurse was able to get a month's supply to get me started so I took my first two pills last night.  He is tapering my dose up so that week 1 I do 400mg, week 2 I do 600, and then 800 from then on.  Don't know what Anthem will quote me as a co-pay but I'm supposed to tell them I'll get back to them and call my nurse who will try to negotiate for me.  But I've got enough to last me until December and who knows, I might not even tolerate it that long.

Can't decide whether to go out and stock up on Biotene, Immodium, etc. or wait for the inevitable side effects to start kicking in.  Doc says he has a few patients who had barely any SE's and several patients who have been on Votrient for years, but he did admit when questioned that the average length of time for anyone to be able to tolerate it and for it to remain effective is much shorter than that.

Comments

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    Just wanted you to know that

    Just wanted you to know that I am sorry one treatment didn't work and that your provider is advocating in your behalf. Getting you to another treatment so quickly is admirable!

    Hope you remain encouraged ! Know that we'll walk this journey along side you as well.

    Keep us informed on your progress and hopefully little to no side effects for you as well.

    Gentle Hug, Jan

  • Djinnie
    Djinnie Member Posts: 945
    Votrient!

    Thaxter I am sorry the IL-2 wasn't effective how frustrating! I am on Votrient I was prescribed 800mg straight off the bat, I didn't do well. It was reduced to 200mg and worked up gradually, which was much better, I am on 600mg at the moment. I won't say that I find the side effects easy but I work through them, some of the initial ones have cleared up gradually. So far, thankfully, I have never needed either Biotene or Immodium, so I should wait on that if I were you. I am glad to see your Oncologist had the forthought to graduate your doses too!

    I hope you do well on Votrient and it proves useful for many years to come. I have been on it around 8 months now, the last scan showed no growth.

     

    Djinnie

  • Srashedb
    Srashedb Member Posts: 482 Member
    Sorry

    so very sorry for your news; on to the next attack! 

    Sarah

  • thaxter
    thaxter Member Posts: 124
    Djinnie said:

    Votrient!

    Thaxter I am sorry the IL-2 wasn't effective how frustrating! I am on Votrient I was prescribed 800mg straight off the bat, I didn't do well. It was reduced to 200mg and worked up gradually, which was much better, I am on 600mg at the moment. I won't say that I find the side effects easy but I work through them, some of the initial ones have cleared up gradually. So far, thankfully, I have never needed either Biotene or Immodium, so I should wait on that if I were you. I am glad to see your Oncologist had the forthought to graduate your doses too!

    I hope you do well on Votrient and it proves useful for many years to come. I have been on it around 8 months now, the last scan showed no growth.

     

    Djinnie

    Good to hear

    Glad to hear it's working for you.  Stability is a great thing.  I don't know if I'd say IL-2 didn't work for me--I did have March-October with mostly stable mets and drug free quality of life.  The largest ones are showing progression while the several sub 1 cm ones have been stable for four or five scans now.  Between discovery on 1/6 and first IL-2 on 2/28 they grew fairly rapidly.  I don't know that the mets are having any great effect on me.  I complained to the doc about some shortness of breath but I've been fighting bronchitis for most of October. He doesn't think they are large enough to cause any trouble breathing.

     

  • thaxter
    thaxter Member Posts: 124
    Five days of half dose and SE's are here

    Started 400 mg five days ago, next week 600, and the next week 800.  BP is 170/100 so I took HCTZ which I've been off of for months but it did lower it to 145/93.  Fatigue was severe at times over the weekend and I've got an ache above my shoulder blade that won't quit--it hurts when I breathe and might be pleurisy.  Calling to doc today to see if HCTZ is OK or if he wants to write a different BP script.  Also, they scheduled my first appt for six weeks--everything I read says I should get liver enzymes checked in a few weeks, so I will ask about that.

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Hey Thaxter!
    Sorry to hear

    Hey Thaxter!

    Sorry to hear about your medical challenges. I hope they find the right mix for you soon. Hang in there and keep on top of those doctors!

    Hugs

    Jojo

  • foxhd
    foxhd Member Posts: 3,181 Member
    Jojo61 said:

    Hey Thaxter!
    Sorry to hear

    Hey Thaxter!

    Sorry to hear about your medical challenges. I hope they find the right mix for you soon. Hang in there and keep on top of those doctors!

    Hugs

    Jojo

    Il-2

    Sorry Thax. If votrient is what you need now, then so be it. I believe everything works better after having been on Il-2. So, you are probably still ahead of the game. BTW, we haven't heard from any new Il-2 users lately. Maybe that means that drugs like votrient are being more effective. Stay strong my friend.

  • alice124
    alice124 Member Posts: 896 Member
    thaxter said:

    Five days of half dose and SE's are here

    Started 400 mg five days ago, next week 600, and the next week 800.  BP is 170/100 so I took HCTZ which I've been off of for months but it did lower it to 145/93.  Fatigue was severe at times over the weekend and I've got an ache above my shoulder blade that won't quit--it hurts when I breathe and might be pleurisy.  Calling to doc today to see if HCTZ is OK or if he wants to write a different BP script.  Also, they scheduled my first appt for six weeks--everything I read says I should get liver enzymes checked in a few weeks, so I will ask about that.

    IL-2 / Votrient

     

    My husband, one putt, has been in the Nivolumab-Votrient trial for 2.5 years now. He is on the 800 mg Votrient dose. The side effects for the most part have been very tolerable with fatigue being number one.

     

    He also had IL-2 in early 2012 but the IL-2 was discontinued and his response labeled mixed* (*more growth than shrinkage).  But we've always attributed some of his success in his current trial (Nivolumab-Votrient) to the latent effects of IL-2. Some oncologists believe that even though an IL-2 treatment  is not labeled successful, it may provide a boost to other treatments down the road. Hope that’s true in your case.  

     

     

     

  • BDS
    BDS Member Posts: 172
    Join the club

    IL-2 failed me to and I am now back on Votrient. I have been on Votrient for almost 2 ½ years now and have had only have relatively slight progression.  Which, if I can give you one word of advice while on Votrient  - if you have a small amount of progression do not panic!  My last scan showed stability and shrinkage in one tumor. Except for diarrhea, I have had only minor side effects while on Votrient, my life pretty much continues the same as before I was diagnosed. My last meeting with my oncologist she said I was doing really well, that I should have no problem making 2016 when she expects Nivolumab to receive FDA approval from RCC. However, I am currently still trying to get accepted into a clincial PD-1 Trial. Always trying

    So anyway, Good luck on Votrient  

    BDS