Uh-Ohh, I Became a Test Mule Today
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.
Comments
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danbren2 said:
toolman1 test mule
Hoping and praying everything goes great for you with wonderful results!
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
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Celebratetoolman1 said: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
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.
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Whoo-Hoo INDEED!!!toolman1 said: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
Just goes to show that being stubborn as a mule works in this fight...WAY TO GO GARY!!!
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Nothing to say except...toolman1 said: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
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
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Celebratetoolman1 said: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
That is wonderful news, congratulations !!:-)
Djinnie
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Hopeful
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
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Premature Celebrationaazbell said:Hopeful
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
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.
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Ouch!toolman1 said:Premature Celebration
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.
I'm sorry! Other commentary is out of my league, except to say I'll help any way I can!
Hang tough!
Michael
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inlyta side effectsaazbell said:Hopeful
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
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
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Sucks!toolman1 said:Premature Celebration
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.
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. . .
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From the "Wannabe Mule"sean_12 said:inlyta side effects
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
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
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Smoooth!toolman1 said:From the "Wannabe Mule"
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
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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