Inlyta/Axinitib

Started yesterday. I'll let you know! Keep me posted how you do

todd121 said:

Drug Study

An acquaintance of mine just discovered she's Stage IV RCC after 10 years of NED. She's entered a drug study that is giving inlyta together with nivolumab. I don't know anything beyond that. I have no idea what the study requirements are or if they are taking on new patients. Might be worth asking about.

Todd

I have been on Axitinib 5 mg 2x a day for a year. In the first few months, I had shrinkage and then stability. But, my scan yesterday shows a little growth and a few new nodules so my Onc will probably change me to another drug when I see him Monday. The first few months I developed high blood pressure which is managed with drugs and experienced some fatigue along with my tongue and mouth being sensitive. After a few months I began to develop hand-foot syndrome. My Onc moved me to a 6 week on, 1 week off schedule (which is not the usual practice) and my hand-foot syndrome resolves during the week off. Beginning about month 9, I began having daily diarrhea that has been difficult to manage but lomotil helps some. I consider myself very lucky to have gotten a whole year out of the drug.

Kathy

xerxes99 said:

RCC - Inlyta

I've been taking Inlyta, or Axitinib, for two months with mild diarehha as the only side effect.  The Votrient I was taking before had more side effects.  I am waiting for FDA approval of the RCC anti-PD1 drug Keytruda, or pembrolizumab, which specifically targets RCC.  It's interesting that your friend is taking nivolumab with Inlyta since nivolumab was approved recently for lung cancer, not RCC.  But then, she has a history of lung cancer which may have encouraged her doctor to do this.  I'm not sure she needs to be in an exclusive study to have it prescribed, but it sounds like a good idea since Keytruda passed its own trials but has not been released by FDA.  I'm going to ask my doc about it. 

I think. Itchy dry flakey skin.

I can live with that. It might even help with my job if I look like one of the walking dead!

Footstomper said:

Keytruda

Seems to be for melanoma

Yes, Keytruda was approved by FDA for melanoma and also, I think, lung cancer.  However, trials showed it worked equally well on RCC but FDA is withholding its release for treating kidney cancer.  The oncologists I have talked with think the issue may be that Medicare is reluctant to pay for it.  But hopefully, it will only be a matter of months. 

a_oaklee said:

Two years and counting

My husband has been on Inlyta for two years.  He has bone mets.  All of his scans are coming back as no evidence of metabolic activity.  He tolerates it very well.  Is on 7 mg twice a day.  In the very beginning he had diarrhea as a side effect, but it was handled by taking Immodium.   He has extreme fatigue, but we think it is related to the narcotics he takes for back pain.  In the past six months he takes the Inlyta 4 weeks on and one week off.  We were experimenting to see if he felt better on the week off.  It turns out that he doesn't feel different during that week.

Congratulations on controlling RCC with Inlyta.  I also have bone mets and now taking Inlyta after both success and failures of other traditional treatments.  Bone pain was holding me back from getting proper exercise and was debilitating so I tried an alternative to pain drugs which were not working so well.  That is, CBD cannibus which is working amazingly well.  Here in California, we have medical cannibus dispensaries which are a God-send.

a_oaklee said:

Two years and counting

My husband has been on Inlyta for two years.  He has bone mets.  All of his scans are coming back as no evidence of metabolic activity.  He tolerates it very well.  Is on 7 mg twice a day.  In the very beginning he had diarrhea as a side effect, but it was handled by taking Immodium.   He has extreme fatigue, but we think it is related to the narcotics he takes for back pain.  In the past six months he takes the Inlyta 4 weeks on and one week off.  We were experimenting to see if he felt better on the week off.  It turns out that he doesn't feel different during that week.

I'm on a low dose but I'm not loving the diarrhea (for which I'm taking immodium and lomotil - but it still keeps a-comin') or the nausea which makes it very difficult to eat. Living on a diet of Water, Gatorade and Ginger beer.

Any suggestions?

See my onc on Tuesday