Axitinib / Inlyta

EL,

My labs were very good. It appears that Inlyta is MUCH easier on the liver than Votrient. I do hope it will work as well as Votrient did on my mets. CT, brain scan and echocardiogram on May 1st.

David

GSRon said:

Aw Crap...

I am very sad here.. just found out that one of my cousins died last night from Uterine Cancer... she was trying to hand on until her son's wedding in June...  Oh how WE hate this disease...

Ron

This gets so tiring. May god bless.

GSRon said:

Aw Crap...

I am very sad here.. just found out that one of my cousins died last night from Uterine Cancer... she was trying to hand on until her son's wedding in June...  Oh how WE hate this disease...

Ron

Ron,

I'm so sorry about your cousin. I try hard not to hate anything, but I do hate this disease 

David

I am sorry for your loss - believe me I know what you are going through. My daughers boyfriend / fiancé was murdered on March 30^th Sometimes life just sucks. - BDS      

a_oaklee said:

Great scan report

Hi all fellow Inlyta users.  My husband just got the results of his scans and they continue to be "no evidence of metastatic disease"!   He has been on Inlyta (I'm pretty sure) since February 2013.  We have graduated from every 3 month scans to 4 months!   The oncologist was very positive in regards to the future for us.  Certainly, that was nice to hear. 

Annie

Annie,

That's fantastic news! NED and a little more time between scans, all good! Congratulations!

David

a_oaklee said:

Great scan report

Hi all fellow Inlyta users.  My husband just got the results of his scans and they continue to be "no evidence of metastatic disease"!   He has been on Inlyta (I'm pretty sure) since February 2013.  We have graduated from every 3 month scans to 4 months!   The oncologist was very positive in regards to the future for us.  Certainly, that was nice to hear. 

Annie

Sorry.  They say "no evidence of METABOLIC disease".   They are repetitive in using this phrase.  It's not NED.  When they try to explain it to us, they say you most likely still have cancer cells in your body, however, they are dormant.  It's the most that they can assure us of.  They said that its in you and will eventually get active again, but that for now and the past 14 months it doesn't "light up" on the CT/PET scans and there are no new sites.  My husband was diagnosed at Stage 4 with mets to bones 2 years 4 months ago approx..  His mets are in the scapula, sternum, iliac crest, ischeal tuberosity, rib, vertebrae, neck of a femur.  I sometimes wonder how anyone could ever say No evidence of disease, because he has so much damage to his bones.  However, I think I am thinking quite literal.  Any comments are appreciated.  I still have much to learn.  I hope all of you fellow Inlyta users are also doing well. 

NanoSecond said:

Did they say it's not NED?

Hi Annie.  My understanding is that "NED" really stands for "NvED" as in, "No Evidence of visible Disease".  If so, I think your husband may qualify.  Bone mets will never return to looking "normal" on scans, BTW.

Either way it still sounds great to me!

David

a_oaklee said:

more info

David:  It sounds really great to us too!  Thank you very much.

Neil:  They did not use the term NED.  I will ask "is he cured?"   "is it all gone?"    "did it die?"  They keep repeating themselves by saying "no evidence of metabolic disease".  I know that "nothing" lights up on the PET scan and that there is nothing to measure.  However, there is damage to the bones.  They don't want us thinking he's cured.  I guess they don't like the word. 

Neil I really want you to share your thoughts.  I'm like you.  Good or bad, I just want to know.  Also, if you can think of a question that I should be asking let me know what that might be please.   How are you feeling these days?  I've been thinking about you.  

I'm sure you've noticed that there is no standard protocol for the treatment of this disease.  Or at least that is what I think.  I know there is first line and second line targeted therapy.  So I talked with our current oncologist and I asked her if my husband was a candidate for IL2.  She said she feels it would be too hard on him.  That is what 2 other oncologists have said too.  I went further to say "he's healthy and has never had anything wrong with him, except this RCC".  She said she does encourage younger patients to try IL2.  (40's, 50's age group).  My husband is mid-60's.  She said that it is her opinion and someone else may think differently.  She is looking forward to PD1, and antiPD1s and thinks it will be available soon and with great promise.  She thinks that is what we should do next.

Annie

Before any of us were diagnosed, we were ned. Sort of like, you can't be nuts until you see a psychiatrist. But once the cat is out of the bag, There is no going back. I think being a virgin is the same thing. There are no do-overs.

I think the more realistic way to look at it is that we are chronic and stable. We will continue to have our scans and blood work. Does anyone just stop being checked? NED means you don't have to continue with tests. Who is taking that chance? It won't be me.

a_oaklee said:

more info

David:  It sounds really great to us too!  Thank you very much.

Neil:  They did not use the term NED.  I will ask "is he cured?"   "is it all gone?"    "did it die?"  They keep repeating themselves by saying "no evidence of metabolic disease".  I know that "nothing" lights up on the PET scan and that there is nothing to measure.  However, there is damage to the bones.  They don't want us thinking he's cured.  I guess they don't like the word. 

Neil I really want you to share your thoughts.  I'm like you.  Good or bad, I just want to know.  Also, if you can think of a question that I should be asking let me know what that might be please.   How are you feeling these days?  I've been thinking about you.  

I'm sure you've noticed that there is no standard protocol for the treatment of this disease.  Or at least that is what I think.  I know there is first line and second line targeted therapy.  So I talked with our current oncologist and I asked her if my husband was a candidate for IL2.  She said she feels it would be too hard on him.  That is what 2 other oncologists have said too.  I went further to say "he's healthy and has never had anything wrong with him, except this RCC".  She said she does encourage younger patients to try IL2.  (40's, 50's age group).  My husband is mid-60's.  She said that it is her opinion and someone else may think differently.  She is looking forward to PD1, and antiPD1s and thinks it will be available soon and with great promise.  She thinks that is what we should do next.

Annie

Hi Annie.  You are most kind to ask about me.  However, are you a member of SmartPatients?  If not, please join.  I am keeping a running commentary of my experience participating in the anti-PDL1 drug trial over there.  It has been quite a ride so far but I only started on April 1st.  My first CT-scan won't be until May 13th.

I won't repeat my whole story here.  Suffice to say that I seem to be the only patient (so far) who has been experiencing continuous intermittent low grade fevers after receiving my (every other week) drug infusions.  This may be a very good thing as fevers are a result of inflamation and if the inflamation is due to the tumors it can help draw the newly activated T-cells deeper inside the tumors to be even more effective.  The doctors have admitted that this sort of reaction was "theoretically postulated" but so far I seem to be the first exhibiting the phenomena for a sustained period.  Of course there is no way of knowing for sure until we do the scan in May.

My next infusion is on Tuesday but it was only yesterday that the fevers finally ended.  Now that they are gone I feel great.

Since I have Chromophobe histology I did not consider HDIL2. For me the risk far outweighed the reward (it is a very rare exception that a non-clear cell patient might respond completely to HDIL2).  However, I do hope to prove that anti-PD1 or anti-PDL1 can be highly effective for non-clear cell RCC patients.  My personal belief is that the majority of all mRCC patients are going to get great benefit from these kinds of drugs - in combination with one or more other drugs to help "prime" the immune system.  The challenge ahead will be to determine exactly what those other drugs are.

In the meantime I pray that Nivolumab or some other competitors version of anti-PD1 or anti-PDL1 will get FDA approval ASAP. It's time.