Axitinib / Inlyta

Alexandra said:

I didn't want to write it, but you forced me Ron

Acne usually comes on a boy's face AFTER he turns 13

Holyshit! haahha

GSRon said:

Aha..!!

Hi All..!!  I almost started a new posting.. not sure if I should or not.. but if request it is easy enough to do..!  I think I now have the answer to my blood thickness issue along with a couple of old concerns I had...  I think I have..  Polycythemia vera  See http://en.wikipedia.org/wiki/Polycythemia_vera  for more info about it. 

I had several concerns at time of surgery last March, 2012, that never got answered.  I had.. enlarged Liver and Spleen.  I have that skin peel on my hands, feet, and those in between regions.  I also have red hands most of the time.  And most recently the high blood pressure caused by excessive red bloow cells, high Hematocrit and Hemoglobin.  All the above are syptoms of Polycythemia vera.  Plus my parents are of European descent which increased the odds a bit.   So I just e-mailed my Dr about it all..  The main treatment is exactly what was perscribed.. remove 500 CC's of blood regularly which for me is twice a week.

So whre did I get the lead..??  Well tonight at Shop Nite (a regular Wednesday night event)..  The sweetie of a pal of mine who just happens to be one smart nurse figured it out..  Darn fast too..!!  I owe her a bottle of wine... wonder what her favorite is..? 

Ron

Ron, my father in law had that. He had blood removed every week or so for a while. He did well.

GSRon said:

Yes, I did a lot of

Yes, I did a lot of reading... should be OK.. just a bit concerned about having my veins all messed up.. but it will be OK..  However the latest issue is my job..  It was not an issue taking a bit of time every 90 days, but twice a week has become an issue..  This may force me out... Now that may also be OK, just a new frontier for me.. we will see..

But, this kind of makes all my info on side effects on Inlyta invalid to some degree..  Just hope it is working... we will see in about 2 months...

Ron

Hi Ron;

I too, have been on the Inlyta, starting in March of this year. My initial tablets, (like you) were (2) 5mg. tablets daily, but after 3 1/2 weeks, I found myself in the E.R. with what was initially thought to be a heart attack, (flush skin, sweating, and unable to catch my breath). 2 hours later, the E.R staff was unable to give me a difinitive answer, as to why this had happened. MY GP Doc and Oncologist conferred and mutually agreed that I should discontinue the Inlyta for an undetermined length of time and "see what happens". 2 month's later all my internal systems had returned to normal, so we resumed the Inlyta albeit, only a single 5mg. tablet daily. Yesterday, 10/11/2013, I had labs/CT/and bone scan, and on Monday 10/14/2013 will get the news on mets activity. I am encouraged, because after the first go round of just 3 weeks plus, the CT's showed significant shrinkage, and now I've been on the stuff for 4 month's straight. For me, my BP has been well managed well by using Tribenzor 20-12.5, and a thyroid med called Levothyroxin 25mcg. I have minimal side effects and quality of life remains good. 

Best of luck to you. Gary

toolman1 said:

Inlyta Experience

Hi Ron;

I too, have been on the Inlyta, starting in March of this year. My initial tablets, (like you) were (2) 5mg. tablets daily, but after 3 1/2 weeks, I found myself in the E.R. with what was initially thought to be a heart attack, (flush skin, sweating, and unable to catch my breath). 2 hours later, the E.R staff was unable to give me a difinitive answer, as to why this had happened. MY GP Doc and Oncologist conferred and mutually agreed that I should discontinue the Inlyta for an undetermined length of time and "see what happens". 2 month's later all my internal systems had returned to normal, so we resumed the Inlyta albeit, only a single 5mg. tablet daily. Yesterday, 10/11/2013, I had labs/CT/and bone scan, and on Monday 10/14/2013 will get the news on mets activity. I am encouraged, because after the first go round of just 3 weeks plus, the CT's showed significant shrinkage, and now I've been on the stuff for 4 month's straight. For me, my BP has been well managed well by using Tribenzor 20-12.5, and a thyroid med called Levothyroxin 25mcg. I have minimal side effects and quality of life remains good. 

Best of luck to you. Gary

10/14/2013 Follow up to labs/CT/Bone Scan;

So the basics are posted on my entry above. The first go-round of the Inlyta (3weeks or 23 days), showed 1-3% met reduction in size, (even though the scan results are read in cm's of initial dia vs reduction in dia). This scan showed all but 1 met had reduced an average of 8-15% in size. The one met that is resisting the drug, has not changed (larger or smaller) since beginning the drug. Don't know why. So now that the cough has been managed, I'm going back to the once daily 5mg. Inlyta tablets. It's odd to me, (the results, that is), because initially, the Onc. had told me that this particular drug was supposed to hold all mets at their current size, and not allow further growth. I'm not complaining for sure, just pleased at the results!

Stay tuned folks. Gary

Hey Kids,

I guess I am the newest member of the Inlyta Club.  Here's hoping it doesn't suck.

Background- Stage 4 Papillary RCC, 2009; Rad neph, IVC thrombectomy, lymph resection 2009.  Remove single lung met 2011. New lungs mets popping up here and there.   IL2 2012- failure (Boooo!), Votrient 2012-2013(Boooo! Hisssss!)  LY2875358 5 infusions (Booooo!)

So the next deal is Inlyta, just got off the phone with the specialty pharmacy.  1 mg tabs, 3 tabs, 2x daily-- so 6 mg daily.  Will be trying some facets of Nanosecond's diet and supplements along with it.  I'm not into side effects-- I have golfing and skiing and rollerskating and dancing and stuff to do.