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faslodex and verzenio

Proudmetsmama profile image
27 Replies

Has anyone found any thing helpful to help with side effects faslodex and verzenio . Is there anyone feeling good ?

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Proudmetsmama profile image
Proudmetsmama
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27 Replies
kellylinkane profile image
kellylinkane

i am on falsodex and verzenio with very little side effect i am vegetarian so my GI system seems not been effect much

Proudmetsmama profile image
Proudmetsmama in reply tokellylinkane

Thanks so much! Great to hear

TammyCross profile image
TammyCross

Depends on what side effects you are having. Some people have a bad time on those two. Some don't. The main problem with Verzenio is diarrhea -- also fatigue, but diarrhea is tiring in itself, so getting the diarrhea under control is essential. Most of us manage with immodium. You have to find the schedule that is right for your body. I also had something for stomach cramps -- same meds as people are given for IBS. Bentyl is the brand name, but I had the generic. The BRAT diet helped when it was bad.

Fatigue is the other big one, and people have different approaches to help with that. The best is exercise, even though it is hard to get going when you feel wiped out. (Exercise also helps combat cancer and depression.) I also took Welbutrin, extended release, which helps with cancer and treatment related fatigue.

I was taking supplements but was told to stay away from them and get nutrients through food, and that did work. The only ones I took were Vit D when it was low (when it was high, bad idea) and B12, not much. I was also told to use pea protein if I wasn't eating meat and dairy. Your need for protein are higher.

Proudmetsmama profile image
Proudmetsmama in reply toTammyCross

thank you so much for all of this very useful information. I will definitely keep it all in mind. I’m also on vitamin D and B12 and not much else. Have you always been vegan or just now? I hope you’re having a good day.

TammyCross profile image
TammyCross in reply toProudmetsmama

I am not vegan. I was vegetarian at one time, not now. I just try not to eat too much animal and fish protein, for the sake of the animals and the earth. I never did order the recommended pea protein. The oncology nutritionist said I would have to eat a couple of cups of peas to get the pea protein that way. That is not a problem! Love peas. I just bought pea sprouts, too.

Proudmetsmama profile image
Proudmetsmama in reply toTammyCross

I love pea sprouts too!!!

TammyCross profile image
TammyCross in reply toProudmetsmama

Turns out pea sprouts and pea shoots are quite different. Shoots have lots of vit. K, and protein. Sprouts have A and C and protein, but I couldn't find how much. I wonder which I bought. Vit K sounds very good - promotes bone health and clotting (I bleed too easily, and suppressing estrogen is bad for bones).

DianaTrapani profile image
DianaTrapani in reply toTammyCross

I also get pea protien through Silk Cashew Almond milk, 10g of protien per 8oz.

TammyCross profile image
TammyCross in reply toDianaTrapani

You mean protein, not pea protein? I haven't tried it. I should. The oncology nutritionist told me to cut dairy because of my chronic diarrhea maybe from meds.

Proudmetsmama profile image
Proudmetsmama in reply toTammyCross

I do Malk almond milk and hemp protein as well! Or coconut milk smoothies delicious

Justme153 profile image
Justme153

I am on faslodex and verzenio also have felt completly rotten. Im so nausea i cant eat or drink. Jan 2 ended up in emergency room .They prescribed two diferent pills for nausia ( niether of them worked). Ive been doing nothing but laying around trying not to move to much cause movement makes the nausia worse. I quit taking Verzenio on the 2nd and today im still not feeling regular. I will be refusing to take 150 mg of verzenio if they try to tell me to give it another chance. Quality of life is important to me.

Proudmetsmama profile image
Proudmetsmama in reply toJustme153

This is auwful I’m so sorry to hear it. Thank you for sharing and I hope you find something that works better for you soon!

TammyCross profile image
TammyCross in reply toJustme153

What did they give you for nausea? They gave me Ondansetron, which I never needed, another anti-nausea med, dicyclomine (used for IBS), which worked best for me -- and I very quickly went down to 100 mg, then to 50 mg Verzenio (abemaciclib). My oncologist said 50 mg would work as well for me as 150. It certainly eased side effects. (My quality of life is important to my oncologist!)

If that doesn't work for you, can you try ribociclib (Kisqali) instead? It is supposed to be more effective than the other two CDK4/6 inhibitors yet have more tolerable side effects.

I reacted badly to one of the generics of exemestane. Ruined my digestion, miserable. Taking a month or more to settle down since I switched to a generic I tolerate. The half life isn't that long, but it seems to take a really long time to resolve the side effects.

Proudmetsmama profile image
Proudmetsmama in reply toTammyCross

I haven’t started yet. Just spoke to oncologist on the phone after my results will see her the 11th. If kisgali is more effective why do verzenio? Thanks so much !

TammyCross profile image
TammyCross in reply toProudmetsmama

Good question. My oncologist and my 2nd opinion oncologist at MSK said I will go through all 3 CDK4/6 inhibitors, so it was just a question of order. The MSK oncologist would have done Kisqali first. My oncologist did Verzenio first. It didn't do much for me and didn't work for long, so....hoping Kisqali will do a better job and side effects will be easier.

Nice you talk to her on the phone between visits!

Proudmetsmama profile image
Proudmetsmama in reply toTammyCross

My onco is also at msk! And we don’t usually talk between visits! She just called me when my reoccurrence PET scan came in. She’s actually not that accessible!

Justme153 profile image
Justme153 in reply toTammyCross

They gave me Ondansetron and Prochlorperazine10mg i could alternate them so i could take one every 4 hours they did not help!! Just had to wait for the Verzenio to work out of my system. I will be starting Ibrance shortly.

TammyCross profile image
TammyCross in reply toJustme153

Good. I found it so much easier.

irisF profile image
irisF in reply toJustme153

J'ai été dans le même cas que vous j'ai reçu Verzenios pendant 5 mois, les effets secondaires sont absolument insupportables. Au bout de 5 mois et après avoir perdu 15 kg j'ai reçu kisquali de la même famille. J'ai tenu une semaine avec ce médicament. J'ai fait une intoxication massive digestive et intestinale qui a enflammé les muscles du dos les douleurs ont été insupportables de plus, je n'ai reçu aucun médicament pour y faire face. Actuellement je ne reçois que faslodex en attente d'un biphosphonate pour protéger les os. Parfois il faut revenir aux traitements plus anciens qui ont fait leurs preuves.

diamags profile image
diamags

For joint aches on faslodex, I found that circumen was helpful. I've never been on Verzenio.

Proudmetsmama profile image
Proudmetsmama in reply todiamags

I was taking curcumin before and was told to stop because there was some contraindication!

TammyCross profile image
TammyCross in reply toProudmetsmama

There are supplements with "phyto-estrogens" that can relieve symptoms of estrogen elimination, but it is not clear whether they act like the estrogens we eliminate to "starve" the cancer, or block absorption of the estrogen we are trying to get rid of. Not worth the risk. The oncology nutritionist I talk to also said supplements are too concentrated and there is a risk of liver damage.

hopeoflife profile image
hopeoflife

I have been taking Verzenio 100mg for a month now. I also get monthly injections of Fulvestrant and Lupron. I have mild diarrhea but bad cramping every time before going to the bathroom. I also have nausea with Verzenio so I take 8mg of Ondanserton and it helps a lot. The worst side effect for me is rapid heart rate (>100/min) and high blood pressure (>140/90). I have headache, dizziness, fatigue and generally feel low and sluggish. Everyone reacts to the medication differently. I hope that you will have great results taking Verzenio with minimal side effects! 🙏💖

Proudmetsmama profile image
Proudmetsmama in reply tohopeoflife

Thank you so much for sharing, I’m so sorry to hear about your side effects and I will keep you all posted ! Be well today

Proudmetsmama profile image
Proudmetsmama in reply tohopeoflife

thank you for sharing and for the hints. I’m hoping to be the few that don’t have many side effects but we shall see. Hope you feel well today

TammyCross profile image
TammyCross in reply tohopeoflife

Those sound like serious side effects, in additional to the miserable ones. Can you go down to 50 mg? My oncologist reduced me to 50 and my side effects weren't as bad as yours. I took Bentyl for the cramps.

DianaTrapani profile image
DianaTrapani

I’m about to start Verzenio, as my body didn’t tolerate Kisqali or Ibrance. We are starting with 100mg per day. I took it as part of the Monarch trial in 2019-2021 and did well on it.

I hoping you do better at a lower dose. Blessings

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