Third time‘s the cha....PFFFFFFFT !!!! I have been traveling to Roswell to go through my screening during the first couple weeks of July. On the 16th I got to spend all day at Roswell. Blood test,...
Thanks guys, At the moment, apparently Trials aren’t accepting new applicants (Blame CV 19). Currently I see Dr Chatta again on 6/25... We’ll see where it goes from there......
Checked with Rochester and Roswell in Buffalo. Rochester’s next step is Cabazitaxil. A more potent anti PC chemo. Roswell (Dr Chatta) feels XTANDI wasn’t given a full run last year. I’ll start XTANDI...
Duck 2-Hehehehehe My last infusion was 3/19. I wrote of fatigue, shortness of breath, and coldness. Today is about six weeks later, and the side effects are still with me. I’ve had a few blood tests....
I was on XTANDI for about seven months in 2019. It was part of a clinical trial combining Ribociclib the test drug with XTANDI the standard of care. I noticed some fatigue I noticed breast swelling...
Thank you guys. I know that bone Mets get zapped but I didn’t know if lymph nodes could be zapped. If they do I’m all for it. I have been offered Zytiga if the ARV7 test that I took April 2 shows me...
I continued in the trial through the month of January, February, and March, and noticed the following: -more fatigue(daily naps, and rising later in AM, as well as general overall tiredness)...
Hi guys, Thanks for the encouragement! I hope this finds you doing ‘well’ in your personal campaigns... Paul...
Stephen S, thank you for the guidance. I go to that site regularly now. Very helpful....
I got my last chemo infusion so far on January 27. I have waited to update because I have had strange symptoms which I was not expecting.Because I had already had chemo and a stronger dose And was...
Since I have been in this trial, I have noticed an increase in fatigue. I have also noticed an elevated pulse rate after any exercise or work. Yesterday I snow blowed my driveway three times. Each...
In the 6 weeks since my (2nd) last Radium Injection, I’ve noticed some decreased energy, and occasional ‘exertion-induced’ shortness of breath. Yesterday I had another treatment. We delayed from a...
“Kill or be killed”- it simplifies the choice, doesn’t it? Best of luck with the plan....
Great News ! Lose a few pounds for me, also... I’ve been gaining this holiday season... 😉...
Thanks DjinTonic... I hadn’t seen any studies or trials with Xofigo yet. This is really good stuff!...
Thanks for your kind words, Cyclone... I read somewhere that people in Trials get the best care; we’re certainly the closest monitored. Since I don’t fancy any surprises in this experience, it’sa...
Hi all, best Christmas wishes to all. I had another chemo infusion on 12/16. My labs illustrated that my PSA rose from approx. 79 to approx 84. I’m over 4 weeks since my last Radium and my energy...
This is a very interesting thread for me. It opens a great window during a three month timeframe two years ago. I wonder how you all feel about Lupron since that time. My experience with Lupron...
Wow, what a busy week. I hope everyone had a good Thanksgiving. I got chemo and Radium 223 (Xofigo) both on Monday the 25th. My sense of taste is somewhat diminished, and I’m not as energetic as...
Yes I do. I’m hoping to hear a success story, as I look into Xofigo with doxetaxil, post- XTANDI failure... Also looking for verification of my understanding: am I right that Xofigo is not intended...
Madelyn, I’m just starting on Radium 223. I hope your questions got answered. Xtandi didn’t work for me either. I’m taking Radium223 in conjunction with Docetaxil (Chemo). How did your father fare in...
As noted above I did have Docetaxil last summer. On this trail I’m getting docetaxil with Xofigo. Last year with Docetaxil I didn’t have any chemo crash after the first infusion. I did have dry...
I got my chemo on Tuesday. I got my Xofigo on Wednesday. the doc who injected the Xofigo is a hoot! I have radioactive pee for 3 days...Other than that, there is no public risk, as Alpha particles...
Hi, I had 6 rounds last year. I posted my experiences for the first couple of rounds. look under the title '4 days on Taxotere' if you're interested. My main takeaway was that SE's start a day or 2...
Hey, thanks for your encouragement! Re scheduling: this has been rescheduled for Tuesday....
Since I have metastatic castrate resistant prostate cancer, I have been looking for trials to enter. The trail with Ribociclib was not successful for me because of the heart issues it induced. Xtandi...
Thanks mattam! Best wishes to you on your path as well......
A View from the end of this path: My wife rolls out of bed at 4:45 in the morning. I am up not much later. We drive an hour to Roswell. And there a few minutes early for my 7 o’clock phlebotomy (and...
My phosphorus is a bit high, but not alarmingly so. Kinda disappointed that PSA went back UP to 22.17. My last 2 previous levels were 22.56, followed by 18.68, so I’d really rather see consistent...
A quick update: my heart is apparently sensitive to the ribociclib QT prolongation issue. Again after the EKG they’re holding me off for this week and the following week. I have my next visit in two...
Hey bro, we’re all pulling for you... keep us updated please....
Thanks Cyclone, I’m pretty pumped by the slope of the line when they showed me the graph. There was a flatter portion between my last 2 visits(2-4 weeks ago) but this slope is steeper as was the one...
8 Weeks: I WILL continue to get ribociclib, though the dose has been decreased from 600 mg to 400 mg daily. ( from 3 pills to 2 pills) I’ve been declared healthy enough to continue, following the...
Good that you have FMLA coverage. I started chemo n Lupron last year with a very understanding manager, who said, and meant ‘whatever you need.’ I took 3 days each of my 6 chemo cycles. He has since...
Always glad to help...supercalifragilistic!...
BTW: hot flashes are considerably worse. With Lupron alone, I told people I had Warm Flashes... not any more......
My hot flashes weren’t a problem for me when I was just on Lupron, but are worse with the addition of Xtandi ( I’ve also added ribociclib, but I’m not aware of a connection). Because I’m more...
Note: I am the second patient at Roswell Park to be put into this protocol and get the Robo cyclone. The first patient has been on it for approximately two years and has not had a QT prolongation...
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...
Hi LjK, Thx, here’s hoping the best for your husbands recovery as well... Paul...
Hi Bucks, hi Cyclone thx for ur replies... Cyclone you are always supportive n positive... I appreciate that. Here’s to a good report 7/5......
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?...
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...
Cripes! That could certainly make people rethink their/ our decision to go w Xtandi... Since I’m being treated through that program, I’ll make inquiry. I for one could use some more information on...
So I am two weeks into the trial. I have added XTANDI, and Ribociclib concurrently. I actually feel better since I started taking the two new drugs. I’m sure it’s psychological. My PSA has dropped...
Thanks for the article!! more depth n breadth than what I’d seen already......
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...
Hello again, For anyone interested in researching ribociclib in cancer treatment there’s little information for the lay-person. Today however there was something on NBC national news about it. If you...
Great news! Congrats......
Congratulations! Best wishes that it is well and truly beaten!!...