Hello all my fellow warriors!! I just got off of a video appointment with my doctor. We discussed a few things. I brought up Verzenio in combination with Fulvestrant. She agreed that it was worth a shot!! YaY!
I have only been on Ibrance with Anastrozole and a brief 6 day stint with Cape. This will be my second line of treatment.
Any help or advice?
What is your experience with it?
Thank you!!!
Jody
I started out with 150 mg twice a day and had to go down to 100 twice a day but it did work for 10 months almost a year. Some people get more out of it though so good luck to you. I’m glad you guys agreed upon a treatment.
Patty
Hi Patty!!
This gives me hope. My body was able to tolerate Ibrance so well! I’m hoping I tolerate this just as well. Did you find it tolerable? I’m not looking forward to the Fulvestrant shots, but I’m hopeful I do well for a long time. 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
Thank you, my friend!!! 🩷
Jody
Yeah the shots are slightly painful but you get used to them. I did not tolerate the 150 mg as well. Lots of diarrhea and nausea but when he cut me down to 100 I tolerated it really well maybe not quite as good as the Ibrance but almost.
Good to know. I guess everything can’t be perfect, although, that would be nice!! 🙏🏻☺️
Shots are very tolerable if the syringes are warmed, given slowly and you have a relaxed stance. Good luck with new plan. Sending prayers for success.
Thank you, my friend!!! 🩷🙏🏻🩷🙏🏻🩷
Although I’m on Piqray, not Verzenio, I don have the fulvestrant shots every month and have done since January. (With two weekly shots to start up with.) I have never had the same nurse to administer them twice, and often have to ‘teach’ tne nurses about letting me warm them up first. I don’t know yet, and hope I don’t have to, what it would be like to have them administered cold.
But even though they hurt a bit, it’s not nearly as bad as it was when I first started. They seem to get easier. At least you know what’s coming. So CTGirl, I would not worry too much about it. IT’s a small price to pay for feeling good. And I am feeling so much better than when I was on Ibrance and Anastrozole even. And that went well for me for more than 5 years.
Go well everyone.
Oh my!!! This just made my day. 🩷🩷🩷🩷
I’m so happy you feel so well and that it’s been years!!! I am so hopeful. I feel like I’ve been such a grouch to my family and so hard to be around. I have felt so miserable these past few weeks. This is NOT ME. I am usually so upbeat and happy. My mood is less than tolerable to me. I don’t like myself. Hopefully, this new regimen will brighten up my life!!! 🙏🏻🙏🏻🙏🏻🙏🏻
Jody, great news and good job advocating for yourself !! I have been on Ibrance and faslodex for almost 4.5 years . I did have 2 dose reductions on Ibrance due to low white blood counts/ low neutrophils after my week off . However, I've been doing well on the lower dose for 3 years .
Faslodex : i have less side effects on this compared to femara (which i took after my stage 1 treatment was completed from 2009-2015).
Shots: nurses will know this but just in case, the shots are easier if they are warmed up a bit. I lean on a counter and take my weight off the hip to be injected . Then do the same on the other side . 2 shots each monthly visit . I have my shots and a blood test to check my anc level on day 28 or 29 of the ibrance cycle. - first month had shots twice so 2 weeks apart . I've never had issues with pain afterwards .
Keep us posted !
Oh how I WISH Ibrance still worked for me!!!!! It was soooo tolerable. I’m hoping Verzenio will be easy, as well. Gibby21 has given me hope! 🙏🏻
Thanks for the advice with the shots. I’ll definitely keep the weight off the side being injected.
I appreciate your help. 🩷
Jody
The fulvestrant shots are less painful if you recline the treatment chair to lie on your side, instead of taking the shot standing up. You have to advocate for this, because nurses default to standing, unless the patient insists. Lying down takes all pressure off the muscles so they can relax and accept the shot better.
Thank you!! 🩷
I know Ibrance is sooo tolerable!
Hi Marianne!!
It is and my oncologist decided to put me back on it!!! Yay!!! She took me off Anastrazole and started me on Fulvestrant ( I get my first shot on Thursday).
Do you have any tips for me as far as the Fulvestrant? I pray this works with the Ibrance for a long, long, time!!! 🙏🏻🙏🏻🙏🏻🩵
Make sure the nurses warm the shots before giving them . I get the shots on my sides and take a relaxed stance when I get the shots. I try to walk after shots . I guess it helps the fulvestrant spread. Very tolerable.
Thank you so much!!! I can ask them if I can warm the vial in my armpits!!! Haha!!!
How long have you been getting these?
Sometimes they warm them in their armpits.Lol. I have been getting shots since 2018.
WoW!!! That’s quite a long time!!! Gives me hope!!! 🙏🏻🙏🏻🙏🏻
I get the shots in addition to taking Ibrance. I think they work together. Good luck. Again, the shots are tolerable.
I’m sitting in the chair at this very moment!! Thank you for all your help!! 🩷
I started off at 150mg 2x/day. After a month I had to take a month off due to low WBCs. Started back on 100mg and was dropped to 50mg a month after that (still 2x/day). I have been fortunate that I have not experienced diarrhea that many have experienced. I do try and keep to a low glycemic diet and try to eliminate as much sugar and process foods from my diet as possible. Not sure if that helps avoid the diarrhea or if I'm just a lucky one. I started on verzenio back in June of 2023.
So awesome!! I’m so happy you’re doing well on this!! My doctor has started me on 100mg twice a day. We shall see how I do. I pray this so for a long time. 🙏🏻🙏🏻🙏🏻🙏🏻
Thank you!!! 🩷
The biggest negative is constant fatigue - course I think that is something we all are dealing with. To help possible combat that I'm trying some different things regarding hydration 1st thing in the morning but have only been doing for less than a week and I suspect it is going to take several weeks before I can determine if it helps
I haven’t been on anything since the beginning of January (except for 6 days of hell on Xeloda in February) and I still have fatigue. I take naps every day. I think it’s more the cancer than anything. It wreaks havoc on our poor bodies. I’m retired so it’s not a problem for me. I feel so bad for those who are still working or have young families. I pray every day for all of us. 🙏🏻🙏🏻🙏🏻
Capecitabene worked as far as the cancer was concerned, but it made me severely anemic
I started with Ibrance/Letrozole and switched to Verzenio/Faslodex (Fulvestrant) for my second line of treatment. Some people actually do very well with this switch. Unfortunately, it did not work for me and my cancer took off. Luckily, Xeloda got everything back in line for me. I had no side effects with Verzenio/Faslodex at all, and maybe that was a sign that it wasn't for me. From what I understand, it can cause severe diarrhea, so just be ready with a box of Immodium, just in case. Hopefully, you will not get that side effect. Wishing you the best, I hope it works wonders for you, as it has for so many!!
Thank you so much!!! Xeloda was AWFUL for me!! I lasted 6 days!! It was that bad. Hopefully Verzenio and Fulvestrant is the ticket for me!! 🩵🩵🩵🩵
I’m happy Xeloda is working for you!!! 🙏🏻
hi Jody! Can’t speak to Verzenio since I am still on 1st line treatment of Ibrance but have had 78 shots of Fulvestrant! Couple of tips…I get two nurses to give me the shots at the same time. I lean on the chair they raise for me, taking the weight off my legs. The med is thick and oily so they have to administer slowly over about 2 minutes. We always talk about things like holidays, trips, grandkids, etc. to take my mind off of what they’re doing. They also have a lidocaine spray they use that definitely reduces the initial sting. They don’t always think of it so I ask for it. You do get use to them.
I hope you get a lot of time out of this combo. I have been told by my Onc that the Fulvestrant is the heavy hitter so glad to hear this was a choice for you.
Thank you so much!!! I appreciate the advice!! I will definitely ask for lidocaine spray before the injections, if not, I will get the spray that 1711JPD suggested. I would think Yale would have it, though!!🙏🏻🙏🏻🙏🏻
I used this spray befor the Faslodex injections. Bought my own as center stopped providing. Got it via Amazon. Not very expensive at all.
Best wishes to alk. ♥️
OK. For some reason can't post photo. It is called Cold Spray, blue and white can $13 on Amazon.
Thank you!!! 🩷
If not, Ice packs on both sites before the injections works very well too. Also, I had one nurse that sort of massaged the area with her free index finger as she pressed the injection through. That was fantastic. So I asked my last nurse to do this too. She was good about it and did it, not as well as the first nurse, but it helps take your mind off the site of the injection.
Also, make sure they inject it slowly, at least a minute per shot, and yes, warm it. If they don't, put it in your armpit or between your thighs.
I had a really easy time on Ibrance. Verzenio was not so good. It was less effective and the fatigue was worse. I went down to 50 mg because of diarrhea. The research shows that Kisqali is more effective and works for a longer period of time than Verzenio. My onc went from Ibrance to Verzenio, but my second opinion onc at MSK said she would have done Kisqali first. She said it didn't really matter because eventually I would have all three CDK4/6 inhibitors.
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