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IL-2 failed; starting Votrient

thaxter's picture
thaxter
Posts: 124
Joined: Jan 2014

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.

Jan4you's picture
Jan4you
Posts: 1325
Joined: Oct 2013

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's picture
Djinnie
Posts: 945
Joined: Apr 2013

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

thaxter's picture
thaxter
Posts: 124
Joined: Jan 2014

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.

 

Srashedb
Posts: 482
Joined: Dec 2013

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

Sarah

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

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      

 

thaxter's picture
thaxter
Posts: 124
Joined: Jan 2014

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.

alice124's picture
alice124
Posts: 898
Joined: Mar 2012

 

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.  

 

 

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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's picture
foxhd
Posts: 3183
Joined: Oct 2011

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.

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