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bye bye Votrient

GSRon's picture
GSRon
Posts: 1163
Joined: Jan 2013

Yes, no more Votrient.. Next up is Inlyta. More to follow when I get home tonight.. Ron

GSRon's picture
GSRon
Posts: 1163
Joined: Jan 2013

OK, now that I am home...  I got the news late this afternoon...  My Liver is not happy.. not at all.  But I must say, there are times I wished I was wrong...  turns out that indeed my high Bilirubin is not the direct result of the Votrient..  I have some form of Liver disease, and thus my Liver is over sensitive to some drugs..  On one hand, I feel cheated.. the Votrient was working wonderfully on the Mets, and it should of stayed working for about another year or so.  On the other hand, I got an extra 6t plus months added to my life clock... better than nothing..!!

So, it about 6 hours I start on my big vacation... no drugs to take, just will try to relax and enjoy... I will wave as I pass over Ireland and Scotland... wish I had the time to meet up with you both... even if just to say hello....   Sorry that won't happen this time.. maybe next year..!

I will not start on Inlyta until after I get home... my Dr wants me to get full scans as a baseline to see if there has been any growth in my Mets, so we will then know if the drugs are working when I get my next scans after that....  Sorry if I sound a tad bummed.. but I am...  That said... time to get me head on straight and go have fun..!!!

Be Well All..!!!

Ron

I am alive
Posts: 217
Joined: Jul 2012

No way around it. That's the really sucky thing about this (bleeping) disease - Votient's kicking cancer's ass, doing a supurb job,  but NOOOOOOOO, that's not good enough. Things can't be simple.  An exotic ancillary  disease - in the liver of all places -  has to show it's ugly face and toss a monkey wrench into a perfect plan.   :(

Well, looking on the bright side (as we always have to do), Smilehow fortuitous that your drug vacation coincides with your actual vacation. Enjoy the hell out of it! Zoom! Zoom! 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Seconds ago I wished you good luck on another thread!  Coming here, I see your less good news and that Peg has said it all for me, so a new plan on your return but meanwhile go and get Manxed out!   I'll be looking out for your plane as it passes over Scotland!

GSRon's picture
GSRon
Posts: 1163
Joined: Jan 2013

Well like I said, can't really blame the Votrient. My Liver has this rare disease. I may not be able to take many of the Cancer drugs. My ball game my of just been cut a bit shorter. Worst part is that I have over a month supply here. Ron

foxhd's picture
foxhd
Posts: 1868
Joined: Oct 2011

There will be another try. Your docs have a little time to figure things out. Let's see,..your kidney is gone. Your liver is going, Your hair is gone. Now you are going to the races. Have a great trip. I know you will because you only see the positive. Has anyone ever mentioned that cancer sucks?

GSRon's picture
GSRon
Posts: 1163
Joined: Jan 2013

Thanks Fox Man..!!  Yes, Cancer sucks.. but oh well... not a darn thing we can do but fight the good fight.. and live...   Hope you are getting back to normal, what ever that may be...  Good to see you posting...!!   I guess my concern is that many of the good drugs are now off limits for me... like the HDIL2 you have been doing...  Not that I am in any hurry to go through that, but, in the back of my mind, I keep thinking that my turn may soon come..but now, maybe not.   No time to worry about it now... my flight is boarding soon..!   All of you take care, be well and enjoy when ever you can..!!  Even without Cancer, life is often too short...

Cheers..!!!

Ron

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

Ron,

     It looks like road blocks go up everywhere when we least expect it, cancer does suck, big time!! Anyway, try to keep your mind clear and have a wonderful time on your trip, may this be one in a line of many to come! 

                                                                            Sending love, prayers, and good health to you!

                                                                             Brenda

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

As I sit here reading your (Fox and Ron) posts of the last several days, Winston Churchill's famous quote keeps coming to my mind:

 

IF YOU'RE GOING THROUGH HELL, KEEP  GOING. . .

 

 

Keep going. We're here.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Wishing that the news was better for you, and wishing there was something a little more positive I can do.

I'll keep my prayers, hopes, and wishes going for you and envy you a great time on your holiday!

Live it to the fullest!

GSRon's picture
GSRon
Posts: 1163
Joined: Jan 2013

On the Irish Sea..!!  Hi All..!!  I am posting this from the ferry boat on the Irish Sea... can't hardly understand some of the people already... heh.. fun fun fun..!!  OK, so I just got a race program and looked at the entries...all 92 of them..!!  Yes there will be a lot of competition..!!  However I also looked at the famous riders that will do a parade lap, guests of honour...  and there are two names I know well...  Dave Roper has raced my bike and got the first set of back to back wins.. Dave was the first American to win a TT Race on the Isle of Man.  But then I see the name Hurley Wilvert.. yes I know neighter name will be famliar to any of you... but I go on..  Hurley and I were room mates for a bunch of years... he decided to remarry some cute (short) gal, move her in and move me out.. good move on his part.   Hurley was a factory Suzuki Road Racer and raced in Europe and all over... but also on that team was a guy named Barry Sheene.   Barry was very wel known (from England) and he retired down in Australia.  Barry lasted 8 months after his Dx of Cancer, do not know what type.  Barry decided to forgo standard treatments and to the "starve the Cancer diet" of veggie juices..   So for all you want to do it Holisitically well, there you go...

 

OK, so far the sailing is pretty smooth... no need for the dramamine this trip... in fact I did not bring any.   The fun has begun...  Oh yes, had two drinks too... the alcohol sure tasted good, but I only had a little bit.. too risky to get crazy right now..!

 

Be Well All..!!!  Cheers..!!

Ron

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Have a great time there Ron and the very best of luck with the racing!!

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi Ron, 

Have a great time Ron! I am glad the sea is calm, that stretch of water is choppy at the best of times. I last travelled across in January 2012, it was the worst trip ever, the storms were terrific. 

I remember Barry Sheene very well, he was very popular with all the girls. I think he had stomach or bowel cancer.

Looking forward to reading your posts, have a blast:)

Djinnie x

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

And have an absolute ball!  I'll be cheering all the way from South Carolina!

foxhd's picture
foxhd
Posts: 1868
Joined: Oct 2011

I feel like I'm on the trip with you. I'll have to pay more attention to the races. Have a GREAT time!

GSRon's picture
GSRon
Posts: 1163
Joined: Jan 2013

I got here no problems.. it is now after midnight here... I just read my today's e-mail, a pal of mine that lives near me died... Prostate Cancer.  He was on Chemo and I thougth it was working... he never complained.  I recently saw him and he looked a bit weak, he was his normal smiling self... ****.. just ****...

Ron

GSRon's picture
GSRon
Posts: 1163
Joined: Jan 2013

Thanks Brenda and Alice.. you both are such wonerful people.... like everyone here....

Ron

GSRon's picture
GSRon
Posts: 1163
Joined: Jan 2013

Here is a short update on post Votrient.  I am starting to get color (colour) back in my moustache.. do NOT look at my picture.. heh..  It may be a while before the hair on my head looks normal again..  :)   Also, I finally have most of my energy back..  and am about 45 days without any treatments..  Wondering what the Inlyta will do.. soon to find out..

Ron

GSRon's picture
GSRon
Posts: 1163
Joined: Jan 2013

OK, it is now Thursday 9-5-13.  I have a visit with my Onc this afternoon.. and yesterday late, my Inlyta arrived.  Likely I start on the new drug tonight..!  Time to start the new fight.  Thanks all for the support.. I really appreciate it..

 

Question.. should I revive one of the old Inlyta posts, start a new post, or continue with this one or one other of my posts..?  What would help the group the most..?

 

Be Well All..!!

Ron

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Good thinking Ron!  Unfortunately there doesn't appear to be an obviously appropriate existing thread, does there?!

I (of all people!!) suggest that you start a new thread with a nice transparent title that clearly identifies Inlyta/axitinib as its topic.  Votrient has become the most active thread of all and I can see that axitininb/Inlyta will rapidly become another valuable focus, so a good clear thread name is highly desirable.   Good luck on it - what a pity that Votrient bashed our livers so hard.  (I can't help wondering whether I might have had a lot longer benefiting from it if I'd been started on a lower dose, but then, the logic of hitting my pathology with all guns blazing was compelling, given its extreme aggressiveness.)

GSRon's picture
GSRon
Posts: 1163
Joined: Jan 2013

Thanks..!  And I totally agree, I have a hunch we all (or almost all) plus some of the Drs think hit it hard, full dose... get those buggers..  But from the small cross section of folks here.. it seems like starting at 600 MG may make more sense...  That is not based on anything but my impressions.

I will start that new post, once I have a couple of days under my belt...  (Uh ladies, no peeking under my belt either..  :)  )

Be Well All..!!

Ron

angec's picture
angec
Posts: 621
Joined: Mar 2012

TW, how about just taking 200 mgs of Votrient for a while, better than taking none? Are you availing yourself of the milk thistle and the dandelion tea?  I don't know the consensus on that one but moms doc told her to use both.  

 

Ron, you are a trooper.  I hope the Inlyta serves you well and the side affects are nil. I haven't read too much on it at all but heard it has worked well for some.  Sending everyone here big hugs! OOOOOOOOXXXXXXXXXXX

 

Baaa-bs's picture
Baaa-bs
Posts: 50
Joined: Jun 2013

Ron,

Only best wishes go out to you and hoping this new drug will work for you! This, I believe, is the oral version of Torisel. That's the IV drug I was on. They say it has had really good results for people, just the IV version didn't work for me. If it isn't the oral version of Torisel, it attacks the tumor the same way as Torisel. By directly going after the tumor and killing it.

My side effects were rash-hives ,mouth sores, taste change, dry skin, heartburn. Stock up on prylosec, I was given an RX for the mouth sores, Eucerin. As for the rash-hives, I was put on a daily dose of Prednisone.

Once they get this cough controlled, I very well could be starting your favorite old drug - Votrient.

Big hugs to you!  :)

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

Smile

I'll be thinking of you and will keep up with your updates.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Just so that no-one is regrettably misled:- please note that Baaa-bs seems to have had a bit of a brainstorm and what she's said about Inlyta and Torisel is nonsense - there's no connection whatever between the two drugs; they're in different groups of agents and they have totally different mechanisms of action.  (Her comments and tips on side-effects of Torisel, however, are a different matter and may well be very useful to those going onto that drug.)

Baaa-bs  I hope your cough is brought under control and that you are able to start Votrient soon.  As you'll have read, both Ron and I have benefited from it and we'd both have very gladly stayed on it if we hadn't had to come off for liver enzyme problems.  Based on our experiences, you may want to have some pretty serious discussions with your oncologists about the best dose level for you to start on.  I can't help but think that some of us might have been better served by starting at less than 800 mg/day and increasing the dose only if there looked like a convincing reason for doing so.   We both also found it a kind drug in terms of side-effects and I hope it proves to be equally gentle for you.  Good luck.

Baaa-bs's picture
Baaa-bs
Posts: 50
Joined: Jun 2013

Sorry to have lead anyone in the wrong direction. I know , at least I think he said, Inlyta like Torisel went after the tumor, while votrient and sutent go after the blood vessels that feed the tumor.

Anyway, I sure hope it works for you . Better start taping my consultations. Thanks wedge for clearing things up.

GSRon's picture
GSRon
Posts: 1163
Joined: Jan 2013

HI All..  well I think you deserve a good picture of my bike... well not really, but notice the decal on the front part of the fairing..  Not perfect, but I did put a few pence in two Cancer funds and hope I helped raise the awareness just a bit...  After all, All Cancers need a cure.. soon I hope..  The link is below for a larger size view..

http://goldstarron.com/2013/BSA%20Goldstar%20Norton%20S.jpg

http://goldstarron.com/2013/BSA%20Goldstar%20Norton%20Frame%20A.jpg

BSAon the Isle of Man

GSRon's picture
GSRon
Posts: 1163
Joined: Jan 2013

Yes, R E S P E C T...   you know the song...  FYI, I had been slumming a bit in to the women's world here...  Ovarian and Breast Cancer, etc... OK some guys get BC too.. sigh..   But I now feel like  a total whimp compared to what many of the women have gone through..!  I sat here in tears reading some of the stories... heavy sigh...    All I can say is I sure hope there is a cure soon.... G-d bless all you women...!  (and guys too...)...

Ron

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

We're still laughing at your big "O" definition of ovarian cancer and here you are - hanging with the breast cancer crowd. Old love'm and leave'm Ron.

I'm kidding, it's great that you're supporting female survivors. Just don't be putting pink ribbons in your hair.

GSRon's picture
GSRon
Posts: 1163
Joined: Jan 2013

How about this for pink.? (It may be a bit hard to see, but the pink helmet is there, with the ribbon..!!)

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