Ribociclib, exemestane, everolimus clinicial trial

Tamera,

I was nervous too, but it really has not been too bad. I was mostly wary of the Afinitor, but it is a very reduced dose with this trial, 2.5mg I believe. I had a slight rash the first month and tender spots on my tongue, but that is about it, besides blood work issues. I think a lot of mine was the emotional aspect of coming off Ibrance, which had been good to me. I have noticed as time has gone by, I feel about the same as I did with both drug combos, which has been a relief, if that makes sense?

Welcome Cure4mom!

Alissa

Hey ladies, just wanted to quickly check in. Had my study appointment today, my last big long one. I checked in and had my blood work and baseline ekg. My blood work once again was too low. So I am taking another break from the Ribo and Affinitor. I will have blood drawn again on Friday and if still low, Monday. If I can't recover by then it will be a dose reduction to 250 ribociclib. My nurse explained that there is nothing wrong with having to reduce, everyone's body metabolized the drug differently. I just got tumor markers back. Twice now, one has gone up, other down. My first set of scans are scheduled for next Thursday. I am feeling a little overwhelmed right now. I am not sure if it's the blood work, upcoming scans or my baby turning 4 tomorrow. Tomorrow will be better. Hugs to all you ladies.

Alissa

-Z-,

Perfect response and exactly what I needed today, thank you!!

Alissa

Happy Monday ladies! I just wanted to check in and see how everyone was. I had blood drawn on friday, still too low, and will have it drawn again today. If it is still too low, which I am guessing it is, we will dose reduce to 250 ribo. I celebrated my 13 year wedding anniversary this saturday and went camping with my family, it was a great weekend. I hope everyone else enjoyed their weekend also!!!

Alissa

-Z-

I will be happy if we go to 250, I would like to get the blood work sorted out. It is tiring having to check it every other day. And having 4 kids, every time I am low, I pick up something!!

Davenport - 10 treatments is a hassle, but low dose is good. Being sick is a lot of work! Take care.

>Z<

Alissa - I am sorry I am not in the trial and I cannot witness the mayhem at the cancer center. Sounds awesome!

>Z<

My money is on terror! The folks in that cafeteria will remember this day. Have fun. You have cancer so nobody can give you any crap. Gotta take the upside where you can.

>Z<

I have started to follow this thread too just for future information. I am glad to hear most of you are doing pretty OK so far on this combo. As Z says, take good care of yourselves or it is all for naught. OMG Alissa, you are very very blessed! What an adorable family! good luck with that full day of appt...Pajim, nice to see you are doing well and I like your new pic!

Davenport, So sorry to hear about a rod surgery. Take good care and i'm glad you can still do the trial anyway. Luckily it is Spring so you can slowly recover in some sunshine.....

OK I did some reading. It turns out that the white count "rush" with exercise is indeed a rush. It's a well-known phenomenon, but it doesn't last long. If I'd sat down for 20 minutes and then they drew my blood the counts would have been back down, maybe lower than they were before. Depends on how much and how hard you exercise.

So basically I was so close to where I needed to be that the nurses felt it was fine to manipulate the system. :-)

Two hours to go. Technology and my onc do not get along so the paperwork was delayed and it's 13 hours in the building. . . Good thing I have my laptop and a good book.

Davenport, well ouch! That sounds like quite the ordeal. I had one of those random white-head-type pimple sores.

Now I know what to do if I ever get mouth sores. Still don't have any. My only symptom is headaches. Every night. At first I thought maybe my liver was having trouble with the 1 glass of wine but no. Happens regardless. I take the drugs at dinner so it's possible it's the drugs.

Today I went in for the usual to start cycle three. But no. Neutrophils too low. Come back in two days for more blood work. Meanwhile they have zero idea of how this interacts with the study protocol. That annoys me to no end. I feel like they should at least PRETEND to know what they are doing. . .wonder if one of the symptoms of these drugs is crankiness? Feel like I'm over the top some days.

CT scan results show stable. No change. Guess that's good.

But I discovered something else. When you sign up for a trial, make sure you ask what you have to pay for. Turns out I need to pay a co-pay for each scan (and they happen every 8 weeks). I have good insurance, but what would that mean for someone whose insurance isn't as good? No mention of this in the consent form. . . next time I'm asking.

[To be fair I'd do this anyway. I can afford $25 every 8 weeks. But for women who can't it doesn't seem fair]

So I go back on Wednesday and I fail the neutrophil test again. We employ the "run up and down the stairs" trick so [eventually] I pass and get my meds. But of course my onc screws up and doesn't release the meds to the pharmacy, so four hours after I enter the building I'm sitting in a chair crying.

As I'm crying I'm wondering what on earth is wrong with me. Usually I get annoyed at incompetence. All I could think was "I wanna go home!" Of course it's been raining for a week straight.

Anyway I'm feeling better now. I head out for Spain on Sunday for a conference. It's sunny there. I'm packed but you wouldn't believe the bag of meds. Advil, antibiotics, heartburn meds, sleeping pills, one of each cold med, and the cancer drugs. I'm a walking pharmacy. Hope they don't stop me at the border.

[when I travel in the US I don't take nearly as much. If I get into trouble my onc knows someone and could get me meds easily. He has friends in Spain too but it would be a lot harder.]

May cycle 3 work better than cycle 2.

Davenport, I hope you are doing better?

Hey ladies, sorry it has taken me awhile to check in, things have been crazy at best. I was officially kicked off the trial last month. My scans were fine, mostly stable, but my ALT/AST had been creeping,then climbing, until they were at the upper part of 3 times the normal limit, which is the cap for the trial. We held Ribo andAffinitot over the weekend and the numbers went into scary areas. So my onc had to kick me off so I could be treated. I tearfully collected my rx for Xeloda, I am a cycle in now. I went back last week and all of my numbers dropped back into the normal range within 2 weeks. The onc told me we can try Ribo again, but not until it is approved for 2nd line treatment, and we can also try Affinitor with something else down the line, but obviously Aromasin didn't like me or my liver. I am sad and scared to blow through all the work I put in those 2 months, but something obviously was wrong for my body with that combo. I will have trial exit scans soon and that will gage the Xeloda too. I wish you ladies the very best of luck!!

Davenport, I had to go off my probiotic for the trial, nothing natural or herbal, so I would double check. I had the mouthsores and did battle with the rash the first month, the 2nd seemed better. Let me know hoe it goes.

Hugs to all, ALissa