Axitinib / Inlyta

GSRon said:

Gilbert's - OK so an

Gilbert's - OK so an interesting thing... I talked to my one Cousin this morning... he tells me about his "normally" high Bilirubin.  I tell him he has Gilbert's.  He said his doctor never gave it a name.. right.   So I did a quick search and found that Gilbert's is found in families..  So, I spread this info for others in the family to be aware of.  The good news is that Gilbert's normally does not cause any health issues.. but for people like me that take Chemo drugs, well.. it can make a difference..  http://www.nlm.nih.gov/medlineplus/ency/article/000301.htm

Be Well All..!!

Ron

I was explaining Gilbert's to my brother last week and he said bilirubin is the one thing that's always high on his blood work. I told him well, it looks like you have Gilbert's Syndrome too!

David

Well the Sutent ride has come to an end.  After 8 months Mike's tumors have progressed.  We knew it was coming just by the new cough, hip pain, exhaustion, and night sweats.

Dr. Rini has offered him a place in an Axitnib/Dalantercept trial.  Very excited about getting a combination drug trial. He will be on part 1 which is a dose-escalation study so he will definitely get both drugs. Part 2 is randomized.  Seems like a no-brainer to join the trial when Axitinib would be his next option anyway.

Is anyone else familiar with or on this trial?

NanoSecond said:

More Info

It sounds very promising.  Are you sure it is a Phase I trial?:

http://www.acceleronpharma.com/2013/02/acceleron-initiates-phase-2-study-of-dalantercept-ace-041-to-treat-patients-with-metastatic-renal-cell-carcinoma/

No, it is the Phase 2 trial you have referenced.  He wil be on Part 1 of this trial.  I actually first heard of Dalantercept from BDS' post of What's Coming Down the Pike.  It is so nice to have the information that you and others post on this site.  Dr. Rini was quite surprised that I had actually heard of this drug.  Thanks to everyone who contributes to this site!  I will keep everyone informed on how things go.  I am very excited because it is a combination drug trial.

GSRon said:

Ah.. 2 AM here.. and ya gotta

Ah.. 2 AM here.. and ya gotta love that Inlya..  sitting here on the throne.. I know TMI.. but three days of diarrhea, then one day of constipation and back to the diarrhea again.  No, I am not complaining.. just letting those new to Inlyta know what may happen.  

So, besides all the crap.. (pun intended) I am working on my race bike.  Time has a way of getting away from me, and soon the race season will be here.  Oh, and last week I told my boss that he will soon need to replace me.  Just can't work with all that is going on with me.. time to pass the torch on to someone else...

OK, back to bed now..!

Cheers..!!

Ron 

Hi Ron,

I am very sorry to hear this, but thank you for the heads up.  I will be starting on Inlyta in one week... First I have to go through a Sutent "wash-out"  period.

Is that constipation due to your taking Immodium?

-N

NanoSecond said:

What a way to celebrate the Holidays...

Hi Ron,

I am very sorry to hear this, but thank you for the heads up.  I will be starting on Inlyta in one week... First I have to go through a Sutent "wash-out"  period.

Is that constipation due to your taking Immodium?

 

-N

Nano.  I thought you were on Sutent for quite awhile.  We haven't been on that drug yet, but the length of time I have observed people having success on it seems promising.  I've read where people do two weeks on and two weeks off.  Or something like that.  This is why my husband asked if he could be off of inlyta for a week.  We thought if that worked for Sutent patients maybe it would be okay for Inlyta patients.  If Sutent is not working adequately when a patient is taking weeks off, is the patient instructed to take it continuously?  How long does it take to have a "washout" period?  Re Inlyta and diarrhea...my husband had that problem too, but he changed his diet to have less fruits and vegetables.  It really helped.  He does take Imodium occasionally.  A symptom specialist physician suggested trying Metamucil crackers...and that was a huge mistake. 

NanoSecond said:

Sutent

Yes, I was on Sutent until 2 days ago.  Right now I am in a washout period of 5-7 days before I will start on Inlyta at 5mg (and then slowly titrate up).

About 2 weeks or so ago I went in for my routine full body nuclear bone scan followed by a CT-scan with contrast of my Chest/Abdomen/Pelvis.

The results were a bit unexpected because they came back mixed.  The bone scan showed that Sutent was still holding all of my bone lesions safely in check.  As in my previous scans all of my bone lesions (in 3 different areas) showed only stability or shrinkage.  This part was expected by me because I would have felt a lot of pain immediately if they were not in check.  Unfortunately, for the first time, the CT scans revealed small lesions in my liver.  It also showed a few slightly enlarged lymph nodes near the liver and some very slight growth in a soft tisse mass that is growing out of my bone lesion at my sacrum (this mass was not new but the slight growth was).

So the bottom line is that I have developed resistance to Sutent after being on it for about 14 months.  In a case like this the recommended second line therapy is Inlyta - since I had responded so well to Sutent (beating the PFS by several months).  I also investigated joining a clinical trial for one of the immune therapy drugs (anti-PD1 or anti-PDL1, or a vaccine etc.) but did not find anything suitable or that met my criteria.

Right now I am halfway through SBRT (Stereotactic Beam Radiation Therapy) to kill that soft tissue mass at my sacrum.  This consists of 12 sessions - one each working day - that last about 15 minutes.  It is painless and there have been no side effects (and none are expected).  I will complete this one week from Tuesday.

I still feel terrific and had no significant side effects while on Sutent although my WBC (white blood count) did start to slowly drop during the last few months.  For that reason my onc and I decided to reduce my Sutent dosage slightly (50mg/37.5mg every other day with no breaks) and perhaps that may have allowed these liver mets to develop.  Who can say?  I still find it very bizarre that Sutent seems to work just fine on all of my bone mets and yet I have experienced progression elsewhere.

I think it's great that the sutent worked for you for so long.  Inlyta has been good for my husband, and I hope that it works well for you too.  I'm sorry to hear about the small lesions in your liver.  Hopefully they will be zapped by the Inlyta very quickly.  How soon will you get scans following a new medication?  For my husband it has been 8 to 12 weeks.  Personally, I wonder whether 8 weeks is enough time to judge whether or not a medicine works. 

I agree with your opinion that it is bizarre that a medication can work for one area of RCC and not for another area.  While my husbands bone mets were responding, the primary kidney tumor was growing.  And I believe that the amount of tumor load would have an effect on the ability for the medicine to work.  That's just my common sense way of looking at it.  I am beginning to believe that combined medications is the way to go.

My husband has had cyberknife to his spine twice (different sites) without any sideeffects post-procedure.  He had SBRT on two separate occasions, two different areas, shoulder and hip.  No side effects either except feeling incredibly tired.  He was in quite a bit of pain before the radiation, and the pain to those areas is now gone.  The sites show no growth, no metabolism. 

Take care Nano.  I hope you continue to feel terrific! 

GSRon said:

Just an update here..  I

Just an update here..  I think you all should know where my "head" is at..   First at DX I thought the worst..  but since my Dec 2013 Dr visits I feel very powerful, mentally.  Yes stage 4, booo..!!  But the Votrient worked but was not Liver friendly.  Now Inlyta is working and so far is Liver friendly..!  Having had 2 succesful drugs has given me the profound idea that any - all treatments are likely to work for me.  Maybe that is over optimistic, but that is how I think and feel.  And even before, I looked forward to my last scans, as I was sure Inlyta was working.  Does postive thinking help..?  Dunno, but I feel mentally better every day..!  There are as many good things that can happed to us as bad...  and I have always said my cup is not half full, but over flowing..

So, I have already made sure I have accomodations for next August on the Isle of Man..!  My Hostess EXPECTS me to be there...  She will greet me with a cocktail in hand for me.. a hug, and a big smile..  I should also say that in the last two years, when I got off the Ferry boat and on to the Isle ground, I bent down and kissed it..!  There is also a special spot on the Island.. no wait there are many special spots.. but the one in particular is at the Fairy Bridge. People go there and pay respect to the little ones...  I also have gone there and wished everyone well...  It is a tearful side trip..  Anyway, I have not yet made my airline reservations, as the costs are high right now... the fares go down closer to travel time... still expensive but not much concern... I am going..!!

I better get the race bike sorted.. lots to do and the bike ships out in June.  Time flies when you are having fun..!!

Be Well All..!!!

Ron 

To my fellow Inlyta users:  My husband decided he felt so lousy he wanted to take a week off of the Inlyta to see if he could just have one week of relief.  The doctor advised against it but said the decision is yours.  Tough decision.  He stopped taking 7 mg and switched to 5 mg.  Has been doing that for one week, and indeed does feel better.  When he told the doctor what he did, he was told to take 6 mg instead.  So, I guess we will see how that goes when he has scans in 3 months. 

Don't all of you think it's interesting that a prescribed 7 mg prescription is composed of 1 5 mg pill and 2 1 mg pills, and that it is two separate prescriptions, two prices.  We have never encountered that before. 

Nano:  Thank you so much for providing additional interesting information.  I have been doing research on Metformin since you mentioned it.  Is it necessary for you to monitor your blood sugar?  I also think it's great that you have a doctor willing to work with you and consider your ideas for your own care. 

NanoSecond said:

Metformin

I am very pleased to hear you that picked up on the Metformin tip.

Since I am following a low carb diet my oncologist wanted to make sure that I don't go hypoglycemic (even though I am taking the minimum dosage of 500mg/day).  So I now monitor my FSB (Fasting Blood Glucose) at least twice a day.  I have to admit the results have, on occasion, surprised me.  This has convinced me all the more that cancer patients really ought to pay far more attention to diet and never assume anything.

In this regard I have been dealing with two mysteries.  The first is long standing.  I was not pleased with my FSB (this was before I started taking Metformin) because I believed that - in my case - it should have been far lower since I follow a low carb/high fat diet.  However, since starting on Metformin that issue is pretty much resolved, only to reveal another deeper mystery.  I seem to be suffering from a well known effect that is called the "Dawn Phenomena" - wherein my FSB goes UP during the night from the time I take just before bedtime.  Since I am obviously fasting during this time period this is rather disconcerting.  I have no answers yet - just more research on tap.

My oncologist thanks me for the research I do because he has no time to keep up with all the latest studies in the lab.  He is actually following most of my dietary recommendations. Just last week we discussed the latest Metformin research.  He point blank told me that if he had cancer he would be taking it himself!  Please keep in mind that this approach - fighting cancer as a metabolic disease - works across the board on virtually all versions of cancer.  There are about 60 different studies going on regarding Metformin right now.  Some of the most exciting results recently have been in the treatment of breast cancer.

Incidentally I have been on Inlyta at 5mgX2 for one week now.  So far, no side effects.

Yes, I really just wanted to be the #100 post under Rons Inlyta thread.  haha

You've given me more to think about.  Need to look up Dawn Phenomena.  I have always thought blood sugar is highest after meals and decreases with time afterwards.  So the lowest reading should be in the morning before breakfast.  Do I have that right? 

I read that you have to stop Metformin before and after scans for a certain length of time.  Were you aware of that?

I'm happy that you have had one week of no side effects.  My husband didn't complain about side effects until he was on 7 mg twice a day for a couple weeks.  That's when he started to feel very tired and very nauseated.  I wonder if the other members who are on Inlyta had their doses increased.  They wanted us to go from 5, to 7, then to 10. 

You have mentioned before how great you feel and have little to no side effects from the Sutent.  I will be interested to know how you are tolerating Inlyta as the dosage increases.  I'm wondering if your careful dietary plan helps with taking this medication too.  I sure hope so.