Axitinib / Inlyta

angec said:

Neil, one other question.

Neil, one other question.  Were you able to find out if you can do the IL-2 or did you try that already?  Is there any chance of trying the Cabo before the afinitor?  I guess they won't treat you with any drug, until the radiation and surgery is done?  I hope it takes place sooner than later.  Have you changed anything in your diet perhaps?  Praying for you to make the best decision. I wish there was a trial you could get in.  Anything i can do to help?  XX

John (One Putt).  Many thanks.  One of the things I have been trying to do is get a second opinion from Dr. Hammers.  But he is so popular and busy that the earliest I can get in to see him is March 27th.

Angec.  Many thanks for your offer.  I did not consider HD IL-2 because it seemed to have such a low response rate for non-clear cell patients.  I was actually hoping to avoid what has just happened to me (wasting my time with a futile therapy). Yes, Cabo is a distinct possibility but so far I have only failed one TKI and I suspect that I will first need to fail an mTOR as well before my insurance company will be persuaded to cover it off label.

As to my diet I have not changed it but I have eliminated a few anti-oxidant supplements (no more Resveratrol, Vitamin C or Milk Thistle).  I am still completely convinced that controlling my blood glucose is extremely important.  Please keep in mind that I am now taking Metformin as well.  It may be complete fantasy but I actually think that now that I have stopped Inlyta I may be psosibly slowing down the progression of those liver mets.  I only say this because the brand new bone lesion on my right hip is not progressing rapidly whereas under Inlyta I definitely had rapid progression of my left femur lesion (I can feel these guys).

Right now I am holding out for a suitable anti-PD1 or anti-PDL1 trial.  But I will have to make a decision by the end of the week.

Many thanks again for all your kind thoughts and prayers.

angec said:

Neil, how long have you been

Neil, how long have you been taking the metforim?  I know you think this is crazy, but it is a hormone yes? Do you need it or are you taking it just for the cancer?  I was told by a doctor that any hormone would increase cancer burdens, especially if not necessary.  I am not meaning to scare you. Why did you stop taking resveratrol and the others? You were doing just fine with those. Maybe you need to look at the calendar with your notes.

 

1. When did metform start / when did Sutent fail.  Was the dosage correction at fault at all? 

2. When did you stop taking the vitamins?

Just a thought.  You failed two drugs at the moment, Sutent and Inlyta, wouldn't that qualify you for cabo? Do all doctors really pay attention to the type of inhibitor? Most of them just got by name, half of them don't know what they do, tki, mtor etc.  Just saying, that maybe you should ask and try for what your gut tells you. Maybe you can get it.  I also would try for the il-2. You have nothing to lose. 

Just trying to brainstorm, but I am sure you are on top of it.  Always here if you need anything!  Please don't mind the suggestions. You know what is right for you!  Praying for good decisions.  XX

Hi Ange,

Thanks for your concerns.  First, Metformin is not a hormone.  It's also know as Glucophage and it is derived from a certain fungus.  If you are interested I can send and point you to numerous studies that show that those patients taking Metformin (Type II Diabetic patients) seem to do much, much better cancer-wise than those who don't.  That is why it is currently the center of at least 60 different medical research programs right now.

I started taking Metformin only after Sutent had failed me.  I started on it in early January.

Yes, it is possible that my lowering my Sutent dosage to 37.5mg (continuously, with no breaks) might have contributed to allowing mets to take hold in my liver.  There is really no way to know for sure.  All I do know is that Sutent had not failed to control my bone mets even at that lower dosage.

Finally I have never been a big fan of vitamins taken as a supplement.  I prefer to get them in my diet.  The only vitamins I take at this point are Vitamin D3 and K2.

I cut out Vitamin C because it is primarily an anti-oxidant and there have been recent studies that hint at the possiblity that too many anti-oxidants - when only taken as a supplement (but not from foods) - may actually promote the growth of certain cancers.  In particular the studies have centered on Vitamin E; Beta-Carotene; and (this one being new) N-Acetyl Cysteine (NAC).  I failed to list NAC as one other supplement that I have also stopped taking.

Since I have only failed TKI's (Sutent and Inlyta) it could be argued that I have not explored all of the standard therapy options.  That is why my insurance company could say they will not cover Cabo until I try an mTOR.

To be honest (and I know this will get me in trouble in many quarters) I am not anxious to subject myself to HD IL2.  Maybe in the future but right now I still prefer the more subtle approaches to stimulating my immune system.

I do appreciate your brain-storming these various ideas.  I have spent a lot of time researching this disease and what might be the optimum approach to handle it.  But that does not mean I am right.  I am always questioning every decision I make.  In the end I may be wrong to try to strictly follow only the latest science but hopefully whatever I pursue will be useful for someone else if even to illuminate what not to do.

GSRon said:

OK, mid April is scan time

OK, mid April is scan time here... I do expect good results..!  Most likely I am going to get contrast this time.. and just for good measure a Phlebotomy as well...  Time to get my review from the "Warden"..  Hoping for another 90 day pass...!!

Be Well All..!!

Ron

Ron, i got good vibes... only great results for you!  

GSRon said:

Saturday... even with a

Saturday... even with a couple of mouth sores, Saturday was a blast.. check these pictures out...  http://photos.mercurynews.com/2014/03/29/photos-2104-clubmans-all-british-weekend-motorcycle-show-in-san-jose/#6

 

Yes, the #6 picture is my bike...  

 

Ron

GSRon,

     Here's hoping and praying that your scans are great this month!

                                                                   Prayers for good health!

                                                                    Brenda

My husbands scans are due in a couple weeks.  He has been taking Inlyta for 1 year!  Big time fatigue.  Decreased appetite and nausea successfully treated with meds.  Good luck to all of you on your followup appointments.

GSRon said:

The best thing we can all do

The best thing we can all do is keep on living..!  Thanks all for the kind words.. the Magic Mouthwash is working...  San Diego next week, scans the week after...

Every day is a cause to celebrate... we wake up and see the sun... time to hoot and holler..!!

Be Well All..!!

Ron

Ron, that bike looks pretty cool! Thanks for sharing

my mom had pretty nasty mouth sores when she was on afinitor and they prescribed an oral steroid rinse that really helped get rid of them quickly! It was a dexamethasone mouth rinse...I forget the dosages but I'm sure your onc will know about it! Magic mouth wash helped with the pain but he dexamethasone helped get rid of them. Hope this helps!

mom just started on inlyta 3mgx2 2 weeks ago and so far (knock on wood) no side effects yet except for a little rise in blood pressure (140/80). 

David, how did the blood work go on Thursday? Any improvement in your bilirubin??