Ribociclib- has any one tried it?

I’m finally IN the trial. There were a few hurdles like phosphorus level and an EKG question, but I took my 1st dose of XTANDI, and Ribociclib today. One of the expected side effects is diarrhea, and although I didn’t go that far I will be buying Imodium once I finish this update. Another potential SE is fatigue. I haven’t seen any so far. (5 hours n counting...lol)

Post Edited (NOTkidneystones) : 5/22/2019 6:32:14 PM (GMT-6)

Glad you got in, keep us posted, and good luck!

Until today, I had not seen much on ribociclib, written for the lay person. Today at the gym, though I caught part of a report on NBC. If you Google NBC news ribociclib, there’s a video and a written narrative. The news is pretty encouraging. This is what I’m hoping to piggyback on.

Thanks for the article!! more depth n breadth than what I’d seen already...

4-week visit to clinic: The pattern is to come in and get labs then get an EKG first, then see the doctor to get any questions answered and to see the trial coordinator to ensure that I am updated on any possible issues. PSA is 23 & change. Because ribociclib can cause some sort of prolongation in your heart beat there was some concern about my EKG. This trial also monitors electrolytes very closely. Then we talked about my earlier issue with my phosphorus level. I clear all their concerns so far, and go to 7-North to get my experimental meds. A nurse comes by with my next 21-day dose and a glass of water and I take experimental meds. Then I sit there for two hours so that I can do a follow up EKG. I get a free bag lunch, watch cable TV, catch up on emails n take a few 3- minute foreign language lessons. Then I get another EKG. This EKG is okayed by the doctor and I am free to go. I’m STARTING to feel like this could be a successful and long-term thing for me.

There will be 2 more post-dose EKGs if I remember. I’ll visit bi-weekly for those checks and another one or two visits. Then the visits are monthly.

Thanks, I hope to bring encouraging news....

BTW, in the interests of being thorough, I forgot to mention, that periodically there are pee tests too... TMI?

Your drop in PSA is encouraging!

I don't have results yet, but my main oncologist recently suggested I do a genetic test, with the idea that the results could show that medications used in other forms of cancer, MIGHT have potential benefit for me, based on my specific genetic components.

The fact that my grandfather, my father, and then I have all been diagnosed with cancer, makes this step relevant to me. Three generations in a row ...

It's exciting to think that medications used in OTHER forms of cancer could have cross-benefits for other forms of cancer.

So far, I have undergone a genetic test based on a tissue sample. This new one is based on blood work, taken at the lab. The data that is determined later this summer has the potential to help me, as well as others. I like that idea.

Along with my main oncologist, I also agreed to try three different forms of ADT shots, and we found that the third one, in my particular case, lowered the testosterone level more consistently than the other forms of ADT shots. My original urologist refused to try anything other than LUPRON. That was the day I made an appointment with my oncologist. I met with him and within the same week, he had me starting as his first patient on the "early chemo plan" which had just been recommended, based on released studies. I appreciate having a doctor who looks for windows in my treatment, rather than closed doors.

A couple of times a year, I also travel to Mayo Clinic in Rochester, Minnesota. They have an option for patients, in which you can agree to have your medical data entered with complete privacy, to create a larger data bank, to help others, now and in the future. These are some "small steps" that I have taken, with the idea of helping other brothers and comrades. Your participation in this new study is admirable, and I want to thank you for sharing your experiences with the new medication regimen.

I give thanks to everyone who has ever participated in any study or clinical trial --- in the past, the present, and in the future. Something is learned from each person who participates in any form of research.

Stay strong, stay determined, and let us know how you are faring!

With my best,
CYCLONE ~ Iowa State University

Hi NOTk,

Just letting you know I'm following your thread too. Your a G9/10 w a high PSA and 57 like my husband. Thank-you for posting your information & experience. Very encouraging news so far. ~ LjK

I am six weeks into the protocol. Arrive at Roswell I get a blood draw, then I get any KG, then I go to clinic, then they dosed me with the experimental drug, that I wait two hours, then I get a second EKG.
My PSA drop a in 2 weeks is from 23.04 to 22.56...

I continue with my 6- month depot shot of Lupron, received in mid-June. In addition, because I’m castrate-resistant and metastatic, standard of care treatment has me receiving Xtandi 4 pills per day.
I’ve been getting 3 pills(600 mg) of ribociclib, the successful breast cancer drug that’s being experimented with in advanced prostate cancer cases. As far as my experience:

Fatigue seems incrementally increased- less interest in going to the gym, so I’ve gained about 5 pounds.
Brain fog also increased somewhat. Looking at treating that with Adderall or Ritalin or something similar. Unfortunately insurance is balking at covering it.
I did have the runs for a day or two at the very beginning of the protocol. But it cleared up. Then I got my Depo shot of Lupron and I had another three or four days. But it has not been a problem since then.
Appetite has not been a problem. See above.

I have hit a speed bump: Ribociclib has been known to cause QT prolongation. This is a change in the rhythm of the heartbeat. This is the reason that I get 2 EKGs each visit. The upper limit of the ratio is .500 timewise and my post dose EKG showed me at 488. In an abundance of caution, I’m taken off of Robo cycling for the next two weeks until my next check up. I continue with Lupron , and taking Xtandi every day. My phosphorus level is also up to the upper threshold so I’ll be taking a reduced dose of Phos-lo daily.

Going forward I’m not sure if I’ll continue to receive three pills a day, or possibly two pills a day. I do expect to continue to get ribociclib. It’s kind of funny to watch my iPad translate Robo say clip from voice to text. Here’s to a good report in two weeks

BTW: hot flashes are considerably worse. With Lupron alone, I told people I had Warm Flashes... not any more...

Thanks for the updates. This is good information for advanced patients. Please keep posting.
Jim

Always glad to help...supercalifragilistic!