Axitinib / Inlyta

NanoSecond said:

About me

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.

 

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 said:

Today is the last day of the

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..  **** "Bugsy" Mann won Daytona a couple of times.  **** had throat Cancer and lost part of his air passage and has a air passage valve... No **** 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, **** "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 **** is still going pretty strong...  http://www.motorcyclemuseum.org/halloffame/detail.aspx?RacerID=75

And here is a **** 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

Ron, It sounds like you're having a great time. I would have enjoyed hearing **** 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

DMike said:

Good Times & Moving Forward!

 

Ron, It sounds like you're having a great time. I would have enjoyed hearing **** 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

 

 

 

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 said:

If you want.. I have a

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

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

GSRon said:

More...  OK, I keep

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

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

NewDay said:

On Inlyta 1 week

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

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 said:

Just me again... FYI, my

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..!!  

Life is good..!!  Be Well All..!! 

Ron