Keytruda Off Label

angec said:

Hi Neil.. Very interesting

Hi Neil.. Very interesting that the doc took you off and started you on the Pd-1.  I am very hopeful that you will do well with that.  Do you still have many mets now that the Affinitor has helped you?  I thought you already was on the Yervo trial? I can be mistaken and right now my brain cannot think of even the correct spelling of that. The one they say they can add to double the pd-1 if needed.  Interesting that you had fevers again. I don't recall anyone having fevers with it.  Do you? Did Fox?  But I am very glad you are on it.  Looking forward to your updates.  Also, a very nice donation you gave for JoeyWings.  I hope and pray that the vision is realized, soon!  Hugs!

Hi Angec.  I am not in a clinical trial but I am following the exact protocol of one.  That is, I take both Keytruda and Avastin.  In fact yesterday I got my second infusion of Keytruda.

Because it can take up to 3 months before Keytruda does it thing (of the responders: 1/3 respond after 6 weeks; 1/3 respond after 10 weeks; 1/3 respond after 12 weeks) my oncologist did not want to wait until my health started to decline.  Remember, I have been off of Afinitor for over 3 weeks now so I am in a bit of limbo.  At first I started to have fevers and night sweats (typical of tumor cytokine storms) but that ended after the first few days.  The major issue for me right now is extreme fatigue after Keytruda infusions. I also have some fluid at the base of my right lung - likely due to irritation from some enlarged lymph nodes in that area.

It is my sense that Keytruda (or Avastin) is doing something good or else I would be in really bad shape. Still, my lymph and liver mets are very slowly progressing.  This is in contrast to when I was in a clinical trial for an anti-PDL1 back in April/May.  At that time my mets were exploding and extremely aggressive and by the end of June I was just weeks away from liver failure.

Regardless, my next CT-scan will be in 3 weeks (just before my 3rd infusion) and that will tell the tale.

One of my prized possessions is a personal note/picture from Joey.  He wrote to thank me for providing him with a quick delivery of some Cabo while they were waiting on the pharmacy to fill his prescription.  It is horrible when we lose anyone - but far worse when it is a youngster like Joey or Cody.  Some days it really takes it out of you.

vinnyc said:

Keytruda off label

 

hey nanosecond

I did not realize you were in a clinical trial for PD-1. It's not clear if you're out of the trial because of progression or liver problems.I'm trying to learn about the PD-1 drug sequencing. I know you had success with Afinitor on the three-month CT scan. I know there were issues with some of your labs. The decision was made to go back on PD-1. I can speculate on the reasons why that would happen. What is the exact reasoning on going back on the PD-1 drug? It also would seem that it would make it difficult to determine which drug is actually working. Vinny

Hi Vinny. I have not "gone back" on a previous "anti-PD1" drug.  I am now taking a completely different version drug made by a different company.

I entered a clinical trial for an anti-PDL1 drug manufactured by EMD Serono.  The trial was supervised by the NIH in Bethesda.  That was back in April.  This drug proved to be a total bust - not just for me but for virtually everyone in the trial.  In fact I believe this drug will not be brought to market - it's finished.  During the trial my liver and lymph node mets "exploded" and became extremely aggressive.  So much so that no one had ever seen such a response before.  In fact the head of the trial was troubled by the thought that the drug had actually accelerated my progression.  In any case, I left that trial in early June and switched to Cabo.  But it failed within 2 weeks.  After that I switched to Afinitor.

My oncologist felt that my experience on this flawed anti-PDL1 drug was in no way indicative of how I might respond to a "legitimate" anti-PD1 or anti-PDL1 antigen.  That is why I am now trying Keytruda.  And my response, so far, has been favorable in that my liver and lymph node mets are not "exploding".  They may still be slowly progressing - that will be determined in 3 weeks at my next CT-scan.  Even so, that would not be cause for concern (yet) since it could take up to 3 months before Keytruda does its thing (if it works).

Bohjo said:

Can you give me some info how

Can you give me some info how to look for off label treatments 

 

Unfortunately NanoSecond (Neil Feldman) is no longer with us. If he was he would have answered your question as he had for so many in the past. He is missed.

Icemantoo