Axitinib / Inlyta

NanoSecond said:

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.

My husbands bone mets also shrunk by about 1/2 after the first three months, and by the next 3 month period we were given the report of no metabolic activity seen. 

I remember reading on (the website before smart patients got created, can't remember the name of the site)....that some people thought a medicine was NOT working unless they had side-effects.  I personally do not agree with that measure of whether or not a drug is working.  What do you think? 

NanoSecond said:

Side Effects as a measure of efficacy; Update on Inlyta

I think the consensus is that experiencing side effects cannot predict the efficacy (or not) of any given drug.

And since is it bound to be asked - here is one piece of anecdotal proof (myself).  While on Inlyta at 7mg x2 I suffered from a very hoarse (almost became inaudible) voice.

Last Monday I underwent my latest full-body nuclear bone scan followed by a CT-scan of the Abdomen/Chest/Pelvis with contrast.  This was the first set of scans since I started on Inlyta back in early January.

The scans clearly showed that Inlyta has done nothing for me.  As I mentioned earlier (while trying not to be a pessimistic here - apologies to Fox) I was not too surprised for two reasons.  One, I already knew that Inlyta was totally ineffective against my bone mets.  Even though Sutent was completely effective and was still working before I switched to Inlyta.  Two, my C-Reactive Protein was still way off the charts during the past few months.

At this point I now have several new liver lesions and 2 or 3 of the those that first appeared in early December (which is why I had to stop Sutent) have significantly increased in size.  I also have a new (very small) bone met at my right hip.

Since getting this news I have looked once again for any anti-PD1 or anti-PDL1 clinical trial that might be available.  However, something interesting (to me) has given me pause about this strategy.  For those who have been through the drill, BMS (maker of Nivolumab) has restricted each and every RCC trial to only Clear Cell histologies.  I am now wondering if perhaps they may know something. Maybe that something is that these immune drugs are not effective on chromophobe (and other non clear cell) histologies.

Sorry to be the bearer of bad news (for me at least).  But it is what it is.  Inlyta was a bust for me.

Hi Neil,

I've been waiting to hear how your scans went. I knew you were supposed to get the results on Thursday and when I didn't hear anything, I feared it might have been bad news, but I was hoping for good news. 

I'm sorry Inlyta doesn't appear to be working for you. I wish you strength and peace in making the next decision.

David

DMike said:

Inlyta

Hi Neil,

I've been waiting to hear how your scans went. I knew you were supposed to get the results on Thursday and when I didn't hear anything, I feared it might have been bad news, but I was hoping for good news. 

I'm sorry Inlyta doesn't appear to be working for you. I wish you strength and peace in making the next decision.

David

Neil,

Merck's anti-PD-L-1 drug is MSB0010718C. There are solid tumor trials out there. One is supposed to be administered by my oncologist at the University of Alabama at Birmingham. He gave me the drug name when they were planning the trial. The sponsor is EMD Serono.  I hope this helps in some small way.

David

GSRon said:

Dang... I am sitting here

Dang... I am sitting here with my finger up my you know what..  Neil so sory that Inlyta failed you.   Here I was so sure Inlyta would work for you... SH**..  OK, so, time to see what may work for you..  I looked at a bunch of Active / Recruiting Clinical Trails.  Not sure what may interest you, but I bet you have been doing that yourself.  I will absolutely keep my eyes and ears open on my end... you KNOW that.  Plus in San Diego we may hear of something new out there in research land..  Sure hope so..!!

Now I get it why you replied to my CD47 comments... and yes I always ask about it when I get to Stanford, and I will ask again...  you KNOW if it comes down to it, you can stay here with me... if you can stand all the motorcycle parts in the house...  Mybe more wishful thinking.. but..  Holler at any time.. and we will talk more in S.D.

Hang in there pal..!

Ron

David - yes I am familiar that both Merck and MedImmune (BMS competitors) have their own new clinical trials.  However, you may not have followed the crux of my issue.  I am now worried that I may be focused too much on looking for immune based therapies that may not work for a Chrommie.

I am a bit spooked because I just wasted 3 months and in that time frame a few liver mets have tripled in size.  This is not good and they now have to be dealt with ASAP.

Ron - of course I greatly appreciate your kind offer.  However, I don't think it will come to that.  What is of immediate concern is that I will be undergoing a rather complex interventional radiology procedure just before the AACR Convention.  The problem is that I have been given the heads up that I will likely be very fatigued for at least several weeks after I undergo it.  This is what p--ses me off most of all.

I now have a team at the NCI (National Cancer Institute), which is located only a few miles from my home, studying my case in order to make their own recommendations as to which therapy might be best for me next.

Many thanks for all your kind thoughts and offers,

-Neil

foxhd said:

Hate to hear it Neil

Just plain sucks. I think the nivolumab trials were for clear cell only because of a much higher anticipated effectiveness for it. Successful studies facilitate approval quicker. That does not mean that it wouldn't be effective for someone like you. It is playing the FDA game. You'll find something that will work until the next big thing.

Thanks Fox.  Yes, I assumed that was the case too - and it very well may be.  But it sure would be nice to find at least someone with chromophobe who has done well on an anti-PD1.

angec said:

Sorry to hear about the new

Sorry to hear about the new findings, Neil.  I was just thinking about Votrient. TW had CHromophobe and Votrient worked well for him. The issue was the liver enzymes went high and he had to come off. I know Sutent is very similar but I sure as heck would give Votrient a shot!  Hoping you can find an answer soon and start treatment.  Is it wise to even take Sutent while you wait for an answer or is that a no go? Praying for a good response on the next drug.  I also hope you do well with the procedure. I am guessing you are working on the liver mets.  All the best to you!  XX

Hi Neil,

You are the most focused, well informed and therefore best equipped person I can think of for dealing with this, I know all possibilities will be considered. Sutent was effective for you for a much longer time than most in no small part because of your own attitude and drive coupled with your desire and research to make it so. No doubt that will carry into the next phase of defense as you continue to wage the war. Down but not out, you have weapons available and more are coming, hang in there.

Thoughts and prayers,

Gary

NanoSecond said:

Thanks

Thanks Fox.  Yes, I assumed that was the case too - and it very well may be.  But it sure would be nice to find at least someone with chromophobe who has done well on an anti-PD1.

 

Ange, Gary, and Darron.

Many thanks for those kind words of encouragement.

Yes Ange, the very first order of business to get a handle on 3 large liver mets (approx. 3cm each).  Unless I find a clinical trial that totally precludes the procedure I will be undergoing radioembolism in the next weeks.  This is a two-step procedure.  First they will "map" all the blood vessels feeding my liver.  Based on this they will then determine the next steps.  They will need to make sure the procedure will be successful and they are concerned that only two of the mets are being fed by the same primary blood vessel but the third one may or may not be.  Regardless, assuming this step goes well they will then calculate the proper dosage of "targeted" radiation delivered via tiny glass pellets directly into the mets to liver.  These custom made pellets will take one to two weeks to be prepared.

The other order of business is to decide on the next systemic therapy.  Again, if I cannot find a suitable clinical trial (which right now does not look likely) I will move on to another drug, most likely Afinitor.  It is time for me to try interferring with some different signaling pathways than the TKI's (i.e. try mTOR inhibition) otherwise perhaps Votrient might make some sense.  Actually if Afinitor does not work for me the next drug I am interested in is Cabozantinib which is a TKI that also blocks c-MET.

I did have a good run on Sutent and so it may be one I will try rechallenging at a latter date as well.

What is of some concern is the speed of growth of those liver mets.  My bone mets (and my primary tumor) were rather indolent.  But this does not appear to be the case for these liver mets.

a_oaklee said:

best wishes

Neil,  I'm really disappointed to hear the news that Inlyta is not working for you.  I know you weren't completely surprised by that news.  I was.   Garym nailed it on the head when he spoke about your intelligence and your efforts.  If anyone can handle the research and quest for the next best drug it is you!  I began researching chromophobe type of RCC because I wanted to be of help to you.  This is my first time looking at clinical trial information.  Neil, I have an immense amount of faith in you that you will find the next best treatment.  It sounds like you have aligned yourself with other great minds in the healthcare industry.   You are in my thoughts and in my prayers.  I truly mean that. 

Annie

You are so very kind.

I actually now have a lead on two possible immune-based clinical trials (alas they are not anti-PD1 or anti-PDL1) that I may qualify for.  Much yet to be evaluated but I will keep everyone posted - probably by starting a new separate thread.

NanoSecond said:

Thank you Annie

You are so very kind.

I actually now have a lead on two possible immune-based clinical trials (alas they are not anti-PD1 or anti-PDL1) that I may qualify for.  Much yet to be evaluated but I will keep everyone posted - probably by starting a new separate thread.

Neil, sorry to hear your bad news. I trust with your knowledge of this disease  you will  make an informed decision and choose the best option. You have contributed  greatly to this forum now its our turn to offer our support in anyway we can. Sending my best wishes for good results in the future.IF ONLY the drug companies would open  the anti-PD1 and PDL-1 trials to those diagnosed with chromophobe. I understand why they don't,  but I wish they would.