Axitinib / Inlyta

GSRon said:

P.R. Inlyta is not too bad..

P.R. Inlyta is not too bad.. in some ways easier than Votrient for me... only big negative is the Foot and Hand stuff...  but if you read above.. the only bad part is in between... major skin peel..

But if this stuff works.. it is worth it..!!!!

Good Luck..!!

Ron

GSRon, I thought the skin peel was part of the polyaloe vera problem.  Gee-willikers..... not looking forward to that.  Maybe I won't get it?  Many people complained of major skin peel with IL-2, but I don't recall that side effect.  Even so, I'm prepared to manage this monkey on my back.

I am still at 3 mg of Inlyta 2xday, and the oncologist is not ready to move me to a higher dose yet.  So far, no side effects at this low dose except occasional runs to the restroom.  I haven't taken anything to curb it yet because it comes and goes.  I have even begun to feel better ==> I have a pain in my chest that of course, I swear is cancer pain, like ALL pain, and it is starting to subside. I had been doing some hacking at a few golf balls, so the doctor was not concerned about my pain and told me to take some Tylenol.  To me, the pain is not debilitating enough for drugs, so I haven't taken anything for it.

GSRon said:

Phoenix.. thanks for your

Phoenix.. thanks for your report.. I too have some slight intermittent diarrhea...  also some slight constipation.. so it kind of evens out..  I too take nothing to change the bathroom routine..

Ron

Hi Ron;

I too have been on Inlya most of this year. I had issues @ 10mg. daily, so my Onc. cut the dosage to 5mg. daily and I still have issues. 

BP, was thru the roof @ 10mg. but @ 5mg. I am taking 20-12.5 mg. of Benicar HCT. Like yourself, I also get headaches when the BP gets elevated, and dizzy, when it gets too low. Also, you haven't mentioned any issues with your Thyroid, which I am taking 50mcg. of Levothyroxin for daily, to help with dizziness. I too had extreme muscle soreness everywhere, and was very short of breath, so much so, the GP doc. thought I was having a heart attack. An ER visit, and Ultrasound proved otherwise. Unlike you, I have had no issues with skin peel, hair color change, or anything else. Just the diarrea, which comes and goes. I've had 15-25% reduction in met sizes while on the Inlyta, but this week, was told by the Onc. that if the health issues persist, he will entertain the idea of changing to something else. So it's gonna be a wait and see thing i guess. Best of luck to you on this stuff, and I will be watching you're progress. Gary

Body aches (muscle and joint aches and stiffness) are starting to kick in. At first, I thought it might be the years of running, dance class, and skiing combined with the cold weather settling in, but I missed a dose and the aching subsided that day.  When I got back to the dosing schedule, the aches came back the next day. I'm not taking anything for the pain.  It is debilitating when I get up in the morning, but a hot shower loosens things up and I am okay throughout the day.  

I have a dry cough that sometimes gets so bad it causes me to be short of breath, but I found that humidity cures it quickly.  I now sleep with a humidifier in the room, and I am getting one for the office. Yesterday I tried a homeopathic remedy for the cough and it worked. 

I have been going to a health spa weekly to use the rock salt and activated charcoal saunas, steam room, and jetted pools for 6-8 hours, and I feel like a million bucks when I leave.  My goal is to get weekly body massages when I go. 

My BP is 107/70.  I am vegetarian (except salmon), I juice daily, eat no processed foods, no sugar, no refined oils, take flax oil mixed with cottage cheese daily, as well as Ubiquinol, Resveratrol, whey protein, Cal-Mag-Citrate, Psyllium husk, and Vitamin D; and Melatonin at night. I have taken various supplements off and on over the years, but I can actually stick to these because I feel the difference.  I sleep like a baby and I am very refreshed in the morning, despite the body aches.

GSRon said:

Sorry for the short message,

Sorry for the short message, I hate trying to type on my cell phone.  And more fun, my home computer has a virus, and it won't let me change my password..  So now I am using my work puter to give you all a proper update.

Major shrinkage.. from 2 MM up to just over 1 CM..!  And there used to be a Met in my left Kidney "bed", the Votrient made it disappear. And it is still MIA..!  Plus my Liver is very happy on the Inlyta, so all that is great news..!!

But the P.V. (Polycythemia Vera) is my Doctor's and my big concern.  I may have some heart - artery damage due to trying to pump that thick blood through my body.  The outward signs are tingly left fingers, the huge skin peel, and the red and blue fingers on both sides, oh yes and small headaches.  Inside my heart is enlarged along with the one artery, which is the big concern. I will ask to move up myheart echo gram to an ASAP.  The RCC won't matter if I pop a cork...

My Hemotologist did a lot of tests on the extra blood I gave.. and we ruled out any connection to the Chemo drugs or the RCC.  This is totally a separate issue.  And so far no reason why I have such a bad case, compared to how the P.V. is usually found to be.  So yes I had another Plebotomy after my Onc appointment today.  Sadly no pretty nurse, I got the "guy" nurse.  I tried to get a swap, but no success.  You ladies here would of liked to have Terry poke you, I mean needle you, I mean hold your arm.. heh..   Actually Terry did pretty good.. go the deed done..  Looks like more Phlebotomies in my future.   I should also say, even though they use a pretty large needle, I am getting used to it.. not so bad...  I now have 3 doctors telling me I need to take the Amlodopine daily...  Time for me to listen.

JoJo, thanks for the hugs.. I really enjoy them..!! 

 

Ron

Hi Ron,

That's great news on the success with the Inlyta. As you know, I'm particularly interested in how your liver is reacting to Inlyta. Super happy to see your liver numbers are good.

I wish you luck with the P.V. Like you said, getting that figured out is super important!

I saw my oncologist yesterday and after 2 weeks off of Votrient, my bilirubin is back down to 1.6, that's pretty much my norm, so we start Inlyta next week. I hope my liver behaves too!

David