verzenio

[Iwouldlike2knowmore]

I am just on Verzenio alone, Does anyone have there hair coming slow . I have been on Verzenio since April and it seems slow growing, Does anyone else have this problem. Helena

[Silver126]

I had the same problems with Kisqali (Ribociclib). Hair grew slowly and thinner, I used specific shampoo, conditioner and lotion and I managed to keep the situation under control.

[Iwouldlike2knowmore in reply to Silver126]

What kind of shampoo and conditioner did you use. Is a well known brand. Thank You Helena

[Silver126 in reply to Iwouldlike2knowmore]

I live in Italy, I don’t know if you can find io whet you live. The brand is Bionike. An international brand is Revitalash, it’s expensive but I used it for eyelashes and eyebrows that got thinner too and it worked amazingly.

[LadyKatarina]

My onc has jsut suggested I try Verzenio alone. I always get every side effect that every drug has--so I am reluctant to do this. What dose are you taking? On a FaceBook post one lady said she started low--took 50 mg once per day, and then moved the dose up. That is the only way I thought I might be able to take it. Any suggestions? Thank you! Sorry--no good ideas on hair loss. I had some hair loss on Ibrance too--but lowering the dose helped and then hair was fine. Best to you!

[Iwouldlike2knowmore in reply to LadyKatarina]

I started on 150mg and had it lowered to 100mg and I am fine on that, 150mg made me dizzy and out of breath easy.

[TammyCross in reply to LadyKatarina]

I tried to start at 50 but onc insisted on starting at highest dose. Got a couple of weeks off with each step down to let stomach settle. I get every side effect, too. I am okay on 50 mg bid. Still some diarrhea and nausea, but not too bad, and mostly no stomach cramps.

[LadyKatarina in reply to TammyCross]

Are you taking Verzenio with something else? And what?

[TammyCross in reply to LadyKatarina]

Arimidex. I have been on anastrozole with and without Verzenio, then Verzenio only for a few weeks, just started Arimidex, Dealing with one set of side effects was easier. Have a harder time with the AI than with Verzenio.

[LadyKatarina in reply to TammyCross]

Thaks for sharing. Arimidex is anastrozole--you knew that? I also had a horrible time with any of the AI's--anastrozole and letrozole. They affect the mind--cognitive decline, anger issues, and an all around sense of dizzinees or drunkenness. To say nothign of the horrible joint pain. Bad drugs. Have you tried the fuvlestrant injections? I am debating whether to try verzenio alone--or fulvestrant alone, again. Fulvestrant was much easier to tolerate than the AI's Best to you!

[TammyCross in reply to LadyKatarina]

Yes, I was on fulvestrant. None of these problems, lumps and some fatigue, but it was the best. Stopped working. Then I went on an oral SERD. Fantastic. No cancer, no side effects, felt great. Then it stopped working.

I guess I don't do well on AI's, but I have exhausted the alternatives. Couldn't do letrozole (hip pain, depression), went on generic anastrozole. Worse over time, tendon pain, incapacitating. Went off generic and am now on brand name Arimidex. Hard to get. I was afraid that it is the active ingredient, not the extras, the formulation, that were the problem, but onc thought it was worth a shot. Have been on Arimidex a few days. Tendon pain and limited motion starting again. Not terrible yet.

[LadyKatarina in reply to TammyCross]

It is quite the journey, isn't it? I did manage to get Letrozole brand name of Femara--when they wanted me to try it. I did not get all the horrible joint pain! However, the mental issues with it were simple debilitating. What was the oral SERD that you tried/trialed?

[TammyCross in reply to LadyKatarina]

Oh, so maybe I wouldn't have had to get off letrozole, if I had known then to ask for brand name! When anastrozole became unbearable, I learned from this board to ask for brand name. Glad to hear it helped with joint pain, although you couldn't stay on it. I have had some depression, but it is the joint pain that is driving me crazy.

[TammyCross in reply to LadyKatarina]

The oral SERD that I was on in a clinical trial did not have a name, just a number. It was manufactured by Zeno. So the name was something like Zeno-C-5. My hospital (Columbia) was one of the sites, and they were enrolling when Faslodex + Ibrance failed for me; it is always a question of timing, too. My second opinion said getting a year out of it was good; average is 6 months. I was NED during much of that year. So nice.

[LadyKatarina in reply to TammyCross]

Thanks so much for sharing all the info!

[SMPG]

I am now on Verzenio and Faslodex. My one agrees that starting low and perhaps going higher later is the way to go. I started Verzenio at 50 mg two weeks ago and alas, no side effects. yesterday I started the 100 mg dose. Hopefully, no side effects on this either.

[TammyCross in reply to SMPG]

Alas, no side effects? That sounds like a good thing. The question is whether it works. My oncologist basically said Verzenio works or doesn't, and the dosage doesn't matter, as far as they know (of course, there is so much they don't know).

[SMPG in reply to TammyCross]

We don’t know if it works or not. For now, I was told we will not do cancer markers for at least 3 months. I was told that when you switch from one treatment to another, the markers get very high. So I will probably have marker tests and a PET after I have at least 3 months of Verzenio.

[TammyCross in reply to SMPG]

That makes sense. I get markers monthly, but PETs every 3 months. My markers are still up a little bit, after 4-5 months. Not enough to cause concern to oncologist, but I worry with every ripple.