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Any news on Inlyta?

aazbell
Posts: 8
Joined: Feb 2013

I have been reading your post for the last few months and they give me a lot of encourgagement.  This is the first time I have posted myself.  I had my left kidney out in September 2011.  8 cm and had spread to 2 lymph nodes.  reports came back papillary cancer.  Not long after mets in the lungs.  I have been on Avastin, Sutent, and Votrient.  None of them worked.  I'm going to start on Inlyta next. The last Cat scan showed growth everywhere.  I try to keep strong, but sometime it looks like a losing battle.  I went on a awesome motorcycle ride the other day to colorado momument and saw a herd of big horn sheep.  I live each day to the fullest. Thanks to all that post on the forum.  Any ideas! Anne from Ohio

 

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

Keep riding, keep living each day to the full - there's a whole lot in the pipeline, Anne.

Inlyta (axitinib) delivers the goods for some.  If there's any way you could get into trials for nivolumab or cabozantinib you should jump at the chance.  Hopefully, the FDA may soon revisit their turndown of tivozanib the other day. 

There are several leading lights in RCC treatment who are confident that a cure will be found within the next five years.  That may be too long for some of us but there are many current initiatives that hold a lot of promise, so it's far too early to despair. 

We have members here on Inlyta and I hope some of them will spot your message and respond soon. 

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

I did the IL-2 program 11/12 with zero effect on mets. 3/21/13 my Oncologist started me on Inlyta (5mg) twice a day.The first 3 weeks went by without incident. By the fourth week I was already at my GP Doc's nearly every other day, while he tried to catch up to the blood pressure issues. It was always high (203/101), then muscle pain throughout my back, chest, and neck which caused a low grade headache 24/7. The last straw was yet another visit to the GP Doc. with extreme shortness of breath, profuse sweating, and extreme dizziness. The staff took one look at me and asked if I was OK. I told them absolutely not, so they immediately got me into the exam room, gave me 325mg. aspirin, a nitro tablet, and shipped my rearend to the ER, next door. Once there an EKG was performed as they took a good look at my aortic valve and aortic artery. Both were said to be in great condition. My GP contacted my Oncologist, whom immediately stopped the daily Inlyta program. Before leaving the medical offices, a couple of blood vials were drawn and a urine sample were sent out for evaluation. Next AM, GP Doc calls, and says get my A** into his office STAT! Once there, he shows me the blood work results, and a normal thyroid level of 0.0-0.3 stands out vividly @ a 12.2. So his assistant is requested to bring him a "cocktail " mix of 5 different drugs, and has me swallow them, ASAP. I left his office with a fistfull of prescriptions, and was told not to even consider driving for several days.

 That was 3/10/13, and as of today, I feel much better, am sleeping thru the night, the muscle aches have abated, and this coming Wednesday, have an appointment with the Oncologist to hopefully put a better plan of attack together. He may also receive a piece of my mind!! On the last visit with him, I directly asked him about the liver and thyroid levels, and he matter of factly told me they were "elevated slightly", but there was "nothing to worry about". That sort of answer just won't fly any longer.

  Sorry this reply got so long, but I can't stress strongly enough, to stay on top of ALL the numbers that are supplied in a blood work sample. Hopefully you won't end up in the ER like I did. I'll step down from the soapbox now. Gary

 

foxhd's picture
foxhd
Posts: 1914
Joined: Oct 2011

That's  alot to go through, Toolman. I'm really sorry about the il-2. It sounds like you are staying tough and that is what it takes. Very impressive. I'm pulling for you.

aazbell
Posts: 8
Joined: Feb 2013

I started taking the Inlyta 5 days ago.  I have been dizzy and short of breath, but that could be from the lung mets.  The first day I was worried about driving, It seems that I need to consentrate more(red light stop) but that is getting better.  I go to the oncologist next week for blood work.  We'll see how this plays out.  I will tell him to check the thyroid levels.  I went to Yoga last night, kinda hard to do the deep breathing medatations.  Thanks for replying Toolman.  It help to know what to look for,

 

Downinthewoods's picture
Downinthewoods
Posts: 1
Joined: May 2013

So glad your still able to enjoy life!  My husband has been through everything since 2010, beginning with surgery, then all the meds including IL-2, Toricel, Votrient, Sutent, Avastin, radiation, now two weeks into Inlyta. His blood pressure is going nuts but the Inlyta seems to be helping so if anyone out there has fould the blood pressure med that works with Inlyta, please share. He is on 3 or 4 already. The cancer has spread to liver, lungs, outside the brain and especially in all his bones and spine. He lost sight in his right eye due to cancer cutting off blood supply to the muscles behind that eye and causing nerve damage.  Quality of Life is a priority right now so any help is appreciated.

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

The Inlyta WORKS!! See my post under "I Became a Test Mule Today". WHOO-HOO!!! I'm a HAPPY CAMPER!!

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