CSN Login
Members Online: 10

Axitinib / Inlyta

GSRon's picture
GSRon
Posts: 1176
Joined: Jan 2013

Hi All..  OK, so I am creating a new topic for just those that have any info on Inlyta - Axitinib.  I began Votrient in March, 2013, and stopped it due to Liver issues in July, 2013.  I started the Inlyta on 9-5-13.  Here it is less than two days later and my B.P. this morning was 162 / 100.  I should say that I anticpated the B.P. rise and took a 5 MG Norvasc on top of my 50 MG Metorprolol.  Two hours later, I am only down to 157 / 94.  I will check it again about every two hours.  

For me, I get a headache with high B.P. and so far this is the only side effect, but I know it is too soon to really report on much.  More to follow..

Ron

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

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's picture
GSRon
Posts: 1176
Joined: Jan 2013

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

foxhd's picture
foxhd
Posts: 1872
Joined: Oct 2011

This gets so tiring. May god bless.

Srashedb
Posts: 167
Joined: Dec 2013

oh, Ron, very sorry to read this. You have lost more than your share of family and friends.

Sarah

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Ron,

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

David

 

NewDay's picture
NewDay
Posts: 170
Joined: May 2012

Ron,

I'm so sorry to hear your news.

Kathy

GSRon's picture
GSRon
Posts: 1176
Joined: Jan 2013

Thanks all..!  David glad your blood work is good...!  And I hope Inlyta is good for us... my scans are tomorrow.. get results next week.  My take is that all is good..  I say that as I did a lot of walking the last few days.. about 5 miles a day.. and never ran out of wind.. now weak legs is a different story...  And I got to meet a fellow RCC patient yesterday.. had a great chat...  Life is Good..!!  

Be Well All..!!!

Ron

danbren2's picture
danbren2
Posts: 171
Joined: May 2013

It just doesn't get any easier.  So sorry Ron, keeping you in my thoughts and prayers!

                                                             Brenda

BDS's picture
BDS
Posts: 90
Joined: Aug 2012

 

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

 

a_oaklee
Posts: 155
Joined: Nov 2013

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

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Annie,

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

David

GSRon's picture
GSRon
Posts: 1176
Joined: Jan 2013

Love to hear that good news..!  Thanks for sharing..!

Ron

a_oaklee
Posts: 155
Joined: Nov 2013

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's picture
NanoSecond
Posts: 515
Joined: Oct 2012

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.

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Either way it still sounds great to me!

David

a_oaklee
Posts: 155
Joined: Nov 2013

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

foxhd's picture
foxhd
Posts: 1872
Joined: Oct 2011

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.

GSRon's picture
GSRon
Posts: 1176
Joined: Jan 2013

Hi All..!!  There is no time for Cancer now...  it is race time..!!   I had been slowly working on my little racer.. getting it ready for this year's racing season.  It is almost dialed in... found a few issues on the dyno and got most of them sorted.  Still need one more dyno day...   But I am about an hour from the Willow Springs Raceway in California.. just north of Los Angeles.   And we will have some good competition this weekend.. see what we can do..!!   so, be well all.. take a break from the Cancer crud if you can...  Oh yes, had pizza the other day.. no beer, just a good olde meaty pizza with extra sauce..     Oh yes, I will get lots of exercize over the next few days..  On the racer there is no fancy starting system.. and while the other whimps use starting rollers, I "bump start" my bike.. a technique where you push it and hop on to fire it up..!  And yes two years ago, just 6 weeks post surgery I was at the same track, pushing my bike off to start it..!   It will be awesome..!!

So, I proclaim this weekend, take a breat from Cancer.. do something fun with those you love...  Life is good...!

Be Well All..!!!

Ron

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Hey Ron,

Good luck this weekend! I remember when the entire grid would bump start their bikes. I hope you have a great time!

It's a race weekend for me too. I'm heading over to watch the Indycar race at Barber Motorsports Park in Birmingham, Alabama, one of the most beautiful road courses in the U.S. It's also home to an incredible motorcycle museum and a great vintage motorcycle festival every October.

I had to give my tickets away last year because I was undergoing IL2 treatment at the time. I'm going this year and I'm going to enjoy the hell out of it!

Have fun, David

 

 

 

NanoSecond's picture
NanoSecond
Posts: 515
Joined: Oct 2012

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.

 

GSRon's picture
GSRon
Posts: 1176
Joined: Jan 2013

Hi All..!  Not much new here on the Cancer front...  the Inlyta is doing it's thing.. and I am taking a vacation from Cancer... in the last week we did 4 races, got three 2nd place finishes and one third..  Not bad..!  I had almost zero energy and am so lucky my pals kicked in and did a lot of work on the bike for me...  the results shows how good they were to me..!!   And yet there were about 4 other guys and I had a Cancer talk... yes I am not the only one fighting this disease... luckily the others are in an NED or stable status.

And starting yesterday is a big BSA International Rally... pals from all over the world are here, most brought their bikes with them...  time to relax and enjoy... I am not riding still, booo... but will have a lot of fun anyway...!!!  I had a great night's sleep, yet here it is 8 AM and I feel exhausted...  oh well.. time to get going to the first big Rally event...

Yes there is life out there.. we can live with this dreaded disease... No nowhere near 100%, but much better than the alternative..!!

Be Well All..!!

Ron Cool

foxhd's picture
foxhd
Posts: 1872
Joined: Oct 2011

Have fun! Sounds like a good time. It's nice to have more then cancer going on. Enjoy!

a_oaklee
Posts: 155
Joined: Nov 2013

Hi Nano.   With your encouragement, I did join smart patients.  I'm so glad you are doing well, and I appreciate the information that is being shared.  Take care.  Annie

GSRon's picture
GSRon
Posts: 1176
Joined: Jan 2013

Today is the last day of the BSA Rally... we have about 200 old BSA's from all over the world..  Nice to see old pals and meet new ones..!!  The dinner dance was last night.. great fun..!!   I will have breakfast and head towards home...  I have had more fun than I could ever imagine, given the Cancer and the Inlyta..  The fatigue was obvious, but I just took naps when needed... no big deal.  Oh yes, FYI, I noticed that I am having some minor hair loss.. Can't say it is the Inlyta, but figured I would share with all of you... otherwise, status quo..

OH I should also mention that the last few nights we had some famous bike racers from the past speak..  Dick "Bugsy" Mann won Daytona a couple of times.  Dick had throat Cancer and lost part of his air passage and has a air passage valve... No Dick never smoked.. but in the old race days they used some chemicals to prepare the dirt tracks.. and that is what his doctor thinks caused his Cancer... so his voice is a bit muted and soft.. but he is still here..!!  OK, so they initially put in that air valve so he could breathe and then he would cover it to talk.. well, in true racer form, Dick "Hopped" it up.. and his doctor took his modification and together they patented the new design..  Old Racers always find something to do to "go faster.."  And Dick is still going pretty strong...  http://www.motorcyclemuseum.org/halloffame/detail.aspx?RacerID=75

And here is a Dick Mann quote from an interview... the only question about his Cancer, the rest were about motorcycle racing... not sure what year this was from.

DM: Waking up one morning four years ago and being alive. Gordy Ochs and I have both survived throat cancer. So many people have gone through so much more than I have that I hate to talk about it. I was very fortunate in that I had a really good surgeon, and support from my wife after the surgery. She saved my life every day for a month. It’s just another unpleasant adventure in life. It’s pretty interesting to spend a few months not knowing whether you’re going to make it, and you make it. 

 

Do you recognise the attitude in those comments..?  I do..!!

 

Brecky time...

 

Ron

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

 

Ron, It sounds like you're having a great time. I would have enjoyed hearing Dick Mann and the others speak.

I had my latest scans last week and had mixed results. I had stability on some nodules and growth on others but my bran scan was clear and mets are still confined to the lungs. So, I'm gonna do like Bugsy and hop-up the Inlyta before giving up on it. If I pass the screening tests, I'll enter the Axitinib/TRC105 trial at UAB.

http://clinicaltrials.gov/ct2/show/NCT01806064?term=trc105&rank=4

We'll see how things go. I have screening tests on May 13 and would start my first 4 hour infusion on May 23rd. Even though the trial uses Inlyta and I'm currently taking it, I have to stop for 14 days before restarting when the trial begins. I would start at 5mg 2X per day even though I was up to 10 mg 2x day. My oncologist can raise the Inlyta rate as the trial progresses.

Here we go!

David

 

 

 

GSRon's picture
GSRon
Posts: 1176
Joined: Jan 2013

David.. hope you get in to that trial... it sounds interesting for sure..!  Yes I had fun.. but time to pay for it.. very tired the last two days.. but it was worth it..!  Hopefully you continue to do well either way...  Lung Mets sound better than brain Mets to me..

Good Luck..!

Ron

a_oaklee
Posts: 155
Joined: Nov 2013

Yes, Mixed results but overall seems pretty stable to me.  I love that you have a plan and are thinking positive thoughts regarding getting into the trial and continuing on Inlyta.  One of our oncologists, along the way, said that 20% growth is still considered stable and that we shouldn't change medications in their opinion.  Good luck with the screening tests.

annie

Ron:  The same thing happens to my husband.  If he has a great active day, it is followed by 2 to 3 days of exhaustion.   I was wondering Ron if you would mind sharing what your incision is like.  We were talking about incisions on Twinthings thread and if I remember correctly you also had tumor removed from your vena cava.  I was wondering if your surgical approach was the same as my husbands, or if his was done that way because of his back surgery.  Thanks.

GSRon's picture
GSRon
Posts: 1176
Joined: Jan 2013

If you want.. I have a picture..!  Gosh that was a big incision..!  99% is all healed up now...  went from my sternum to just above the navel and angled downwards on both sides..  They called it the "Mercedes"...

Ron

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

That sounds like quite a scar Ron!  I hope you're resting up and regaining your strength. 

Thanks for the words of encouragement AO. Yes I have a plan, I just hope it's a good one!

David

a_oaklee
Posts: 155
Joined: Nov 2013

If there is anyone else still taking Inlyta, drop in on this thread and tell us how you are doing?  Please.  My husband has been taking it for 14 months and is doing very well.  7mg two times a day.  

Annie

Thanks for responding to my question Ron.  Another person here described an incision like yours.

GSRon's picture
GSRon
Posts: 1176
Joined: Jan 2013

Hi David...  yes it was a big scar.. but now almost totally healed.  The one area that is still noticable is just befow my breast bone.  Oh and yes that bone was sore as heck for a long time.. about 6 months...

My Inlyta side effects seem to of changed.  My blood pressure is consistently good now.. it was 105 / 70 about an hour ago.  In my B.P. was so good in April, my Cardiologist eliminated one of my B.P. drugs, no more Amlodopine.  I only take a 5 MG Metropolol pill twice a day and a baby aspirin.  Oh yes Imodium with the Inlyta.  Also I noticed I have a tad more hair falling out... but then I do not have much hair on my head, anyway...  Some days I get minor nausea, lots of diarrhea at times, plus the fatigue.  Yes the fatigue seems to of gotten a bit worse.. but I just take more naps...

Ron

GSRon's picture
GSRon
Posts: 1176
Joined: Jan 2013

More...  OK, I keep forgetting to mention that in the last (almost) two weeks my appetite is huge..  I eat and then still feel hungry.. of course the diarrhea has increased a bit as well.  Not sure what or if this means anything.. but thought I would share it..  Oh yes my B.P. is still very good..

Ron

NewDay's picture
NewDay
Posts: 170
Joined: May 2012

Annie,

I've only been on it for 1 week, so I don't have anything to report, but I will post on the thread if anything changes.

Kathy

a_oaklee
Posts: 155
Joined: Nov 2013

Thanks for checking in Kathy.  I wish you great success on Inlyta!!!   

Annie

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Hi Kathy,

Welcome to the Inlyta crowd. I hope your liver handles Inlyta as well as mine did. I think it will. Inlyta is much easier on the liver than Votrient. After 4 months, I've had mixed results with Inlyta, some stability and some growth. I had great tumor shrinkage results with Votrient.I start the trial I mentioned above on May 23rd. We'll see how the Inlyta/TRC105 combo goes for me.

I wish you great luck with Inlyta.

David

GSRon's picture
GSRon
Posts: 1176
Joined: Jan 2013

Just me again... FYI, my blood pressure is still in good shape.. 116 / 72 just now... and I am usually higher in the morning... nice..!  Also just booked my airline tickets to go over the pond mid August...  Now to get the bike ready.. lots to do... so if I do not answer right away.. well, you know..!!  Laughing

Life is good..!!  Be Well All..!! 

Ron

Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012

GSRon's picture
GSRon
Posts: 1176
Joined: Jan 2013

Alex, delivers again.. nice,,!   OK, for those lurkers that complain about a lack of spell check... or "smell" check as i often call it... here is a tidbit I got from a pal...  I know many here can relate..

 

 "Sometimes spellcheck / autocorrect is your worst enema"

 

Ron Surprised

GSRon's picture
GSRon
Posts: 1176
Joined: Jan 2013

Just sitting here in the doctor,s office. Did all the lab work, just waiting for the results. We are pleased that I only lost half of a pound in the last six weeks. This is much better than before. I even got a pat on the knee. Life is good..

GSRon's picture
GSRon
Posts: 1176
Joined: Jan 2013

Just got the news. Blood work is Ok. No phlebotomy today.

GSRon's picture
GSRon
Posts: 1176
Joined: Jan 2013

OK, one more posting before I call it a day.. and what a day it was..!!  Of course I did some work on my racer, before heading to my doctor appointment.. of course the first part caused me to be an hour late for the doctor...  But of course I called to let them know I would be late..  They handle this with ease.. just put a few people in front of me..  I got there, had my blood drawn.. chatted with a few people in there about my bike and the races on the IOM...  hated to rush off...

So, I checked in with reception.. then ran off to get some soup.. they have great soups at Stanford...  Only got half of it down before I got called in.. that was FAST..!!  The first thing, I got weighed.. I lost less than one pound in the last six weeks.. this is a huge improvement..!  In fact my doctor visits are on a 12 week schedule normally.. but the reason for the early check up was to see how my weight was doing... there were no new scans, just the blood tests, which were still being processed when I got to the check up room...

Soon, my Onc came in... she was pleased with my weight.. we re-reviewed my last scans, and my concerns about them... she looked it all back up.. and we agreed that the slight difference in the results can easily be due to the person doing the scans, or the machine, etc.  She is not worried and that the Inlyta is doing OK for me..   We talked about side effects and I told her the diarrhea is less now that I doubled up on the Immodium.   That is when she gave me that nice pat on the thigh, a big smile and said that she would see me in six weeks and she would set up the scans...  Actually she would have her assistant come in to the room and set up my scans and help with the paperwork from my job...

This is where I had a big meltdown... no not that kind of melt down...  I have a hunch you all think that I am always ready with a response to what ever someone says to me... well, there are times... and today was one of those times... the assistant came in... and we were talking about appointments, and I mentioned that I never had a 6 week appointment before... well then it happened.. I was stunned.. I did not know what to say...  Now this assistant is a very attractive mature blue eyed blonde... and she gave me a look..right in the eye.. and said.. "don't you know..??  We all love you  around here.... we like seeing you..!!"  That did it.. I was speechless..    Yes she made my day....

I hope you all had a good day.. and for those that did not have a good day.. I hope tomorrow is awesome for you..!!

Ron Laughing - Life can be very good..!

a_oaklee
Posts: 155
Joined: Nov 2013

Hi Everybody!  I would really like to know who is still on Inlyta, what dosage, and how it's going for you.  There have been about 3 friends here who have posted that they have moved on to other treatments. 

My husband is still on Inlyta 7 mg twice a day.  He started in April 2013.  His next scans are in August.  The MRI of his spine is being done on a 6 month time frame instead of 3 or 4 months now, and his CT/PET scan is done every 4 months.  His side effects continue to be that he has fatigue, and bouts of diarrhea.  No other side effects and his lab values are all good.  He has no pain in his bones except for where he had the back surgery, but he does take some medications for pain, and obviously they are working well.  His appetite is pretty good.  He does complain of being cold, but thankfully summer is here.  Yes, his thyroid levels are okay. 

Thank you. 

Annie

NewDay's picture
NewDay
Posts: 170
Joined: May 2012

Hi Annie,

I know you saw on my other thread that my scans Friday showed shrinkage.  I have been on Inlyta 6 weeks at 5mg twice a day.  After a couple of weeks, I began having extreme fatigue, high blood pressure, a very sensitive mouth and tongue, sore feet, and a raspy voice.  In the last couple of weeks, the sensitive mouth and sore feet have cleared up.  My thyroid is also out of whack (my doctor's words).

I do hope Inlyta works well for your husband.

Take care,

Kathy

GSRon's picture
GSRon
Posts: 1176
Joined: Jan 2013

Kathy, you may want to get some of the "Magic Mouthwash"  it is great stuff..!  I will make your mouth and tongue feel like new in minutes..!  It won't help the raspy voice though..

Ron

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network