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Uh-Ohh, I Became a Test Mule Today

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

Hello again everybody. It certainly seems like I've become a lurker here again, but truth be known, I'm being held captive by the medical community,

here in Los Angeles. (See my thread under New Kid on the Block). In a nutshell, (for the uninformed), I had left side radical Nephrectomy in July 2012, IL-2 last

November, and had ZERO improvement after the 3 month CT. Next came Inlyta 5mg. twice a day, and after 4-5 weeks, that got me thrown into the emergency ER,

with them thinking I was having a heart attack. After a 325 mg aspirin, and a nitro tablet, the EKG proved otherwise, the technicion shrugged her shoulders and

proclaimed me "fit and fine". Hmmmm. Together my GP doc, and my Oncologist decided that I should probably discontinue the Inlyta. Gee!! Do ya really think so??

So it's been about 4 weeks since discontinuing that Inlyta junk, and I am feeling MARVELOUS once again.

  So my Oncologist decides last week in his office, that he wants me to go see the doc @ UCLA again, whom is conducting a clinical trial that is called

PI Initiated Study: IRB #12-000577. We (the wife) & I again met with him, and he accepted me into his trial, so now we "Let the Games Begin Again"!!!

So if any O ya want me, just perform a donkey "bray" or go find Eore. I might be hanging out with him. Gary.

foxhd's picture
foxhd
Posts: 2029
Joined: Oct 2011

Wonderful news! Just how often do we say that the next thing is just around the corner? I hope this is the one that works. There are so many new opportunities coming out. I am a firm believer in clinical trials. Good luck Toolman.

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Okay Gary you're due for some good news! You have my hopes and prayers that this will be the one that does what it is supposed to do.

 

Will be enthusiastically awaiting trial news. . .

danbren2's picture
danbren2
Posts: 199
Joined: May 2013

Hoping and praying everything goes great for you with wonderful results!

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

CELEBRATE!!

Spent the day @ the Cancer Center yesterday (6/13/2013) for Lab work, CT, and bone scan, then 4 hours of i.v. rehydration.

Just got off the phone 5 minutes ago with the Oncologist's norse practioner. She called, because the Oncologist has been in London all week conducting seminars, and is unable to contact me personnally, but she had some great news to let me know about, leading into Father's Day weekend.She is seeing shrinkage in ALL the tumors, and no new metastes have been located. I see the Doc next Wednesday, and am ecstatic!! Whoo-Hoo!! Gary

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

That we will, Gary.  It's great to hear that you've turned the corner.  You were due some good breaks after all you've been through.  Inlyta does seem to be a very good drug for a lot of people and your news will be a tonic for many of your friends here.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Just goes to show that being stubborn as a mule works in this fight...WAY TO GO GARY!!!

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

Congratulations and go pop a bottle of the best you have :-) Happy to read this, especially because your road has been bumpier than the most.

/G

Djinnie's picture
Djinnie
Posts: 866
Joined: Apr 2013

That is wonderful news, congratulations !!:-)

Djinnie

Darron's picture
Darron
Posts: 239
Joined: Jun 2013

Alice has yet another chance to see more shrinkage!

Way to go, congratulations!

foxhd's picture
foxhd
Posts: 2029
Joined: Oct 2011

.......that says it all. Very happy for you.

aazbell
Posts: 8
Joined: Feb 2013

I'm on the 5th week of Inlyta and have read several people that have had good results.  I'm hoping that the side effects don't get as bad as yours did. I have good and bad days.  Mostly short of breath and a persistent cough.  So I'll keep my fingers crossed and hope that I can share good news with you soon.  Anne

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

Well,,,,,,, I went up to UCLA last week, and did all the "pre-clinical trial" stuff, (urine sample, and 7 vials of blood, height, weight, and all that, supplied

them with discs of the latest CT's and bone scan, along with the reports for both. Monday of this week, 7/1/2013, the nurse practioner, calls me here at

the house and says that because I had a reaction to the Inlyta, it disqualifies me from the trial. Hmm. I guess it's back to the drawing board for my Oncologist

and me. Stay Tuned.

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

I'm sorry!  Other commentary is out of my league, except to say I'll help any way I can!

Hang tough!

Michael

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Gary - That really does suck. Does your reaction to Inlyta disqualify you for other PI trials as well? I'll keep my fingers crossed that's not the case. You are so due for some good news in this arena!

Keep us posted. . .

 

sean_12
Posts: 5
Joined: Jun 2013

Hi aazbell

I had been on Inlyta for some time. The side effect of Inlyta for me is the hoarseness of voice. It produces severe reflux and causes hoarseness of voice. So just take bland bland diet and not spicy food. Avoid fried food, too strong coffe or things that increases reflux.

The other side effect of inlyta for me was peeling of the skin of feet. So keep your feet moistened with lotions. When I was doing well with Inlyta and the liver mets were shrinking, I developed transient blurry vision and the eye doctor diagnosed it as partial central retinal vein occlusion and inlyta was stopped. Inlyta acts by inhibiting the growthfactor to the blood vessels and it can cause both bleeding or blockage of the blood vessels. My advise is that you should not neglet the shortness of breath and talk to your oncologist who would make sure it is not due to any blood clot in the lungs. U amy ignore a cough for 3 or 4 days without fever but not one which causes shortness of breath.

Good Luck

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

Met with my Oncology team 7/10/2013, and we are going to restart the Inlyta, albeit in half the strength as I was taking previously, (5mcg. vs 10mcg.) along with Levothyroxin (25mcg.) daily, to control thyroid function. So far, as of today (7/23/2013), everything is going pretty smoothly. I've had a little bit of voice horseness that comes and goes, and that is really about it thus far. Tomorrow AM, I once again return to the Oncologist and have a blood draw to see whats what internally. So, stay tuned, once again. Gary

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

That's the way to keep it, Gary and we'll be looking out for more news on your labs and your Onc consultation.

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