Changes

[Gibby21]

Hi everyone, my last scan showed some progression so I’m off Ibrance and faslodex (only got 13 months with that combo) now on Everolimus and exemestane. Anyone have any experiences to share? Hopefully good ones? Thanks Patty

[atoth17]

I took Exemestane and had no side effects. I took it with Ibrance for 17 months but now I’m changing meds due to some progression. It was a very easy drug for me.

[Gibby21 in reply to atoth17]

Thank you I don’t think I’m worried about esemestane as much as the other one I never even heard of the everolimus?? Iv been on it for 4 days so we will see!

[kearnan in reply to Gibby21]

My onco just had me stop my treatment plan that I have been on for three years. I am now scared. My CT scan in Feb. 2022 showed the MBC was now in my liver. She did not change anything and last week's CT scan showed it has now grown significantly in my liver. She told me to stop the verzenio and no more falsodex injections.

As of today, I started 20 mg. of tamoxifen and I am awaiting my first rx from the speciality pharmacy for 5 mg. of Everolimus. I see my onco this week. I am scared that this is the "end of the road" talk for me. I am going into my fifth year.

I am also stressing about new side effects to deal with. Let me know please how it works for you. I do not know if my onco is just giving me these meds to placate me. First, she was too booked to see me in June and now that the CT scan report last week, she wants me to come in Thursday to talk to her.

I would love to know anyone else's experience with Everolimus. I am going to be taking 5 mg. per day.

[Gibby21 in reply to kearnan]

OK so I’m on my second week of everolimus (10mg) I have so far not had too many side effects some fatigue but I’m learning to live with that. My last treatment Only lasted a year so I was disappointed but what can we do but move forward. They haven’t checked my blood sugar yet that happens on Thursday and a full blood work up actually on Thursday and I guess I won’t know if it’s working until August they’ll do a three month CT scan. I have only had it in my liver and breast Ibrance got rid of everything except a couple spots in my liver and then those spots started to grow so they took me off that and put me on this they are also doing a tempus test? I believe this is gonna check my immune system to see if my T-cells are seeking out and Destroying the cancer cells my theory is it’s not because here I am then I think there’s some thing they give me to boost up my immune system like immunotherapy. Keytruda? Maybe? I’m not sure I’m no doctor I just go with the flow but I didn’t want to say what’s important in the comments above is that your oncologist did not make time for you and maybe it’s time to find one that will I have never had my oncologist turn me away he has answered every question he has answered every phone call so I think maybe you need to move on or at least get a second opinion . Something to think about. ❤️ Keep us informed good luck!!

[kearnan in reply to Gibby21]

I also have palliative care from Maimonides Cancer Center. The doctor who writes my pain medication. At this point in time, since I am going into my fifth year, I do not have it in me (the strength) to find another onco and then lose my pain medication doctor.

Odd. some side effects state Excessive weight gain and other states excessive weight loss. I try not to read too much of the side effects bc then I get them in my head.

My onco knows how much I dislike side effects (LOL, like who does) so she said she would just start me on 5 mg. of Everolimus. I just feel like she did not make any change when it was found in my Feb. 2022 CT scan and now it grew to more than double. NOW, SHE WANTS TO SEE ME. It can't be to see how I am doing on the medication bc she just wrote it the other day and knows I wont get it until tomorrow.

I am thinking she is just "easing my mind" as opposed to her truly believing at this point, that it is going to change anything. I do not even have someone to call from the hospital and i am trying, believe it or not, to try and do my own cremation, etc.

Friends that were around disappear. I am more stressed about dying and having nobody to do anything. The more I see women who got it into their liver, the more I realize, how big mine is. It would be nice to have family at this point. Friends I have are out of state and have families and their own problems. I think I am overwhelmed by now big it grew. I am just going to ask her straight up how long does she think I have?

[Semple]

I am on my 3rd month of both Everolimus and Exemestane and the only minor side effect is my blood sugar is up from 99 to 113, but blood work from 3 days shows it is down to 103. Otherwise doing great with it. Praying pet scan next month will show no progression. Hope this treatment works for you.

[Gibby21 in reply to Semple]

Thank you I was beginning to think I was on some mystery drug, that no one else was taking….. lol! Good luck on your scans!

[kearnan in reply to Gibby21]

I just started the Everolimus 5 mg. last week. The big difference is that I went from having not such a large appetite (but I am still overweight) bc nothing tasted the same. Now, I am on Everolimus 5. for three weeks and now I am constantly eating. Things that did not taste good taste great.

I had ice cream bars for the first time in two years and they were delicious. Now worried about the weight gain. LOL

[kearnan in reply to Semple]

are you on 5 to 10 mg. of Everolimus. I have to admit I am a big complainer when it comes to side effects. I will NOT deal with them if they are that bad. With Verzenio, she started me on 150 mgs. ( I could not handle it) and stopped after two weeks. Then she lowered to 100 mgs. (same issues and I stopped it again after two weeks). Then she told me she is putting me on the lowest dosage there is which was 50 mg. and I was on that and falsodex injections for a bit over three years. It just ended at the beginning of the month bc the tumor on my liver increased significantly (the rad doctors words) and two new smaller ones are there.

[Buster2020]

Hi… Its been about two weeks. A little tired and achy but nothing bad. I am still getting to know it. I try to not push myself as hard and while working give myself little breaks. Feeling hopeful! I hope it works well for you! I prefer it over the Verzenio. I haven’t had stomach issues.

[TammyCross]

When my last treatment failed, my oncologist put me on verzenio and letrozole. Got a second opinion at MSK, and the oncologist said she would have put me on the combo you are on instead. She concluded no big difference: I will get to all of them eventually. Sounds like Everolimus and Exemestane are easier to take, and may be more effective.

[Gibby21 in reply to TammyCross]

Well that’s good to hear I thought about getting a second opinion myself but I want to see how this works out for me thanks for your reply and I hope all goes well!!

[TammyCross in reply to Gibby21]

Red Azalea went with me and observed afterwards, "We are all guinea pigs." What prompted that comment was that the oncologist said there was no real evidence behind verzenio and letrozole, just anecdotal. There is -- are data on Everolimus, but she said it was before CDK4/6 inhibitors, so it was better than nothing, but we don't know how well it works in the current context.

They are just guessing! In that case, I envy you, because the verzenio side effects are not terrible, but not fun, either. And generally, I trust MSK more than my hospital.

[kearnan in reply to TammyCross]

I had problems with the larger doses of Verzenio when I first switched over and I refused to take it with the side effects I was having. She then, a bit irked I believe, gave me the lowest dose possible 50 mg. twice per day which has worked (with falsodex injections) for three days. I had no side effects from the 50 mg.

Now, I am upset bc it is a new treatment plan bc it grew so much in my liver. Nobody wants any change with this disease.

[TammyCross in reply to kearnan]

Yes, I heard you talked them down to 50 mg. I know there are data on lower dose of Ibrance being just as effective, but have not found data on lower dose of Verzenio. I am not having severe diarrhea (yet?) so I don't think they will reduce dose for me.

Yes, always bad when one has to switch treatments!

[kearnan in reply to TammyCross]

The Ibrance was the first drug I was put on. It was my first step into the world of cancer. I did not even know that you could ask for a dose to be lowered. It was awful. The week off for me I was so sick I could barely get out of bed. I live alone and it was scary. It never got better. I started to get depressed when my week off was coming up and I felt like a drug addict when I could not wait to start taking it again.

So was only on that for 3 months. She never even suggested lowering the dose. I know better now.

[kokopelli2017 in reply to kearnan]

hi kearnan. your story made me sad. and mad. why did they not recommend lowering that ibrance dose when you were so sick. and so new to mbc. just my gut reaction.

but back to the present. yay!... you are now a great self-advocate! I admire your strength.

carole XO