Off Ibrance now Verzenio : My... - SHARE Metastatic ...

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Off Ibrance now Verzenio

Clair19
Clair19

My oncologist said this newer drug Verzenio will not be as hard on wbc. I also have to take a shot once a month. My blood work is better but not great. I’m taking 150mg twice daily which I feel might be to much. But he laughed and said he’s been doing this 16 years and does not get info from google which my husband was amused, me not so much. My index 425- down from 510. That was 3 weeks on Ibrance. I’m not trying to be negative but I have a feeling same thing will happen, then what? I’m going Tuesday for my injections then start new medicine. This I hope will be my last medicine for a while. I hope everyone has a fun weekend.

38 Replies
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Ibrance didn’t work for you—did they speculate why? Verzenio may be the next med for me, though I hope not for a long while. (I’ve been on ibrance for 24 months....PET scan Monday). I’m interested re how it affects you. Best wishes for good success!

Clair19
Clair19
in reply to Buffwright

Brought Neutrophils to dangerously low at .5 and 1.3 wbc. Verzenio is daily taken for 30 days, no time to recover. It just came out in February of this year. People in trails had 40% shrinkage of tumors to 18% given placebos. Not as hard on wbc, mostly loose stools. I hope it works as good as I read on it. It’s not Chemo it’s a little different than Ibrance. I will let you know. I don’t start till Tuesday and also get injection of Faslodex. I have Her2 negative so maybe this will work good. My index went from 510 to 425 in my 3 weeks on Ibrance. It scared him will Neutrophils at 500 scared me too...😮 Good luck Monday, I will pray for you.!!

Buffwright
Buffwright
in reply to Clair19

With dose of 100mg, my neutrophils are typically at .8 and WBC at 1.8. I was dizzy at 125 mg. What is the index you refer to?

Good luck with the new stuff!

Clair19
Clair19
in reply to Buffwright

My cancer index.. 27-29. Was 817 last July. So it’s come way down. Your wbc and Neutrophils are very low. He took me off Ibrance for that reason. I’m still getting dizzy if I lay down to fast. My wbc now 3.3 and Neutrophils 1.8. same as yours. My Neutrophils was .5. My Ibrance was making me scared 😟 So Verzenio here we come.

Buffwright
Buffwright
in reply to Clair19

I trust it will work for you.

Apart from your wbc how did Ibrance make you feel? I’m on day 11, this is the furthest I’ve made it (4th cycle but first x3 stopped day 7,7 & 9) due to wbc. I’m literally in bed, no energy and serious depression. There’s no way I can continue if this is as good as it gets x

I’m cycle 13 and I have to keep stopping it because my ANC is .8 WBC 1.9 and I keep getting fevers. So now I’m on antibiotics for 7 days. I’m constantly exhausted too! I need a break

Snowcone16
Snowcone16
in reply to Clair19

I get monthly folsadex injections too. They just added xgeva. The xgeva (from my reads) protects the bones. Last pill of Ibrance (first cycle) combined w letrozole.

The good thing about these new medicines is that “you never know”. They could be THE ONE that lasts years, cures or makes MBC dormant. Statistics on trials are usually shorter time periods. So long term benefits are still to be determined and could be fantastic!!

Clair19
Clair19
in reply to Snowcone16

Does the foldadex bother you?

Snowcone16
Snowcone16
in reply to Clair19

No, not at all. Although I’m going to do an oophorectomy this summer to Reduce the number of meds. I feel like my hair is thinning on top although everyone tells me it’s not. I do a lot of supplements so I think that helps (and juicing). I do D, C, turmeric and calcium. I know my second month I was pretty stiff. It felt like you would feel after a full day at gym. But coincidentally my iron was low for a few weeks I assume. It was 25. Normal is 50-125. The iron supplement fixed fatigue and a aching overnight.

Clair19
Clair19
in reply to Snowcone16

My hair is thinning like crazy. However I just ended a 6th month of IV Chemo. I don’t think 21 days of Ibrance would do it. My son said I need to drink more because the hormones dying will dry me out causing hair to fall or thin. I’m going to get some extensions next month before our trip.🤗... And Botox, I know sounds vain but going to see family. Don’t want to look to washed out, they will worry 4 sister in laws. I pray this new medicine will not make me miss my trip. My oncologist is very supportive and thinks I’m going to heal? I just wish I could get that positive. I do have breathing problems because of Mets to rt lung, that is why I need to walk and get my cardio back some. Have a great day.

Snowcone16
Snowcone16
in reply to Clair19

I don’t think it’s vain. Think I’ll get my annual Juvederm treatment next month. For me, part of feeling good is looking good. I think I’m going to get the Halo Couture “fall” for the top. The extensions by them are great. If anything, it can stretch my time between coloring. I also have some root spray I bought on amazon that also covers the scalp a bit.

Clair19
Clair19
in reply to Snowcone16

Thanks, some people do. Do you get your Jevederm to the sides of your mouth lines. It would fill them in for about 6 months. She told me last time there’s something that lasts about a year. Can’t remember what,. I tried the cheap stuff resalyn, but like Botox better. Man she loads me up for about 10 a unit. I usually get around 400. Jev a little much at 950 here for crease on both sides of mouth. I have fake lips because I had none. But I did this when my husband died and I felt old to start dating again. Then had partial face lift. My goodness I went crazy 😜. Hey I snatched a young husband...But I Love him, he had MS and does well. Been married 8 years. I’m rambling sorry 😐.

Snowcone16
Snowcone16
in reply to Clair19

I get the Juvederm for my smile lines. I use it to buy time...it lasts me at least 12 months. But I’ve gone as long as 24 months. Probably have done 5 times in past 15 years. It’s been improved. Think the website says 9-15 months. Restylane worked the same for me. I think Radiesse is advertised longer like 18-24.

I’ve done dysport and Botox with same results. Probably 3 times in past 5 years.

Ramble away 😁 I’m married 2 years now to my high school honey. We were engaged at 18 but I got cold feet....

Hugs ❤️

Clair19
Clair19
in reply to Snowcone16

Sorry your right dysport, it left a line on my forehead, still there so no more. Wow newlyweds! I remember 2 years, 8 makes a difference..😂. It went from coffee in bed to now me hooked on the cooking channel!😋 And then the sex thing. I remember a year in I complained to my gynecologist to much for my age, he’s a man he said good for you! I’m like what? Can’t you write a no sex note, or at least 3 times instead of every night. Now I’m like your crazy if you think I’m wanting to have sex. But that’s another story. Enjoy our light conversations.

Nmartinez15
Nmartinez15
in reply to Clair19

Hair thin and dry tip.

My hair was getting horrible every day and after my surgery on October this year my hair become so dry and not shine at all and it feel hard and fall alot. I want to cry bc I always have beautiful hair. So I saw a product and it was kinda expensive so I decide to make the cocktail myself.

Here the recipe:

Organic coconut oil 4 or 5 tablespoon

Lavander oil 3 or 4 drop

Rosemary oil 4 or 5 drop

Mix and put in your head all over and also your roots. Leave in until next day.

You need to wash with warm water and wash like 3 times then use a mask conditioner for 5 to 10 minutes ( I use an organic mask from Ion) omg my hair got smooth and silky!!!!!

I do twice a week.

Clair19
Clair19
in reply to Snowcone16

I guess I’m just to old for that surgery. I had a hysterectomy at 37 but left ovaries. My cancer did not come for another 9 years. Then it was a cyst and cancer inside. My Surgeon said good thing he did not do just a biopsy on breast because might have got just cyst. So Lumpectomy with radiation at stage 2. Then of course last summer it returns. My Mom was like 29 and lived till 56. However that was way before all the new meds for mbc.

_fight_
_fight_
in reply to Clair19

I’ve been on ibrance too

Did not work for me, cancer spread to my oesophagus so I had to start chemo and radiation. Radiation damage my oncologist more than helping it.

Now doing this verzenio and that shot also. First two days of taking verzenio , I had such a bad reaction.

Got two shots sho far

Had to add diphenoxylate and omeprazole. These suppose to lighten the bad feeling and crazy headache I get with taken verzenio,

jebhope
jebhope
in reply to Clair19

Hi Claire,

I also had very low wbc on Ibrance and am about to switch to Verzenio. How was you experience on the drug and are you still taking it? Any information you can give me would be very helpful.

Good luck and prayers for a good scan on Monday! Love, Marianne

Haven’t heard of that med. I’m glad to see there’s another one out there. I pray you tolerate it.

Juliandrea
Juliandrea
in reply to HopeinNJ

Hi HopeinNJ wondering if you are doing anything for treatment besides the Ibrance and Letrozole? Any supplements or tumeric or teas or juices? What is your routine daily? :)

HopeinNJ
HopeinNJ
in reply to Juliandrea

Working full time (part time soon) keeps me mentally in a good place. My NED is from the IBRANCE and Letrozole and of course daily prayer.

Clair19
Clair19
in reply to HopeinNJ

Hey just got approved Feb of this year, supposedly not as hard on wbc and Neutrophils. You can take it twice daily for the whole month. It’s basically same as Ibrance but newer. Most side effect is lose stools. So thanks again for responding, I start next week...Will keep posted. My Neutrophils did go up from.5 to 1.8 so hopefully when I start it will be up more. Good weekend to you!

Buffwright
Buffwright
in reply to HopeinNJ

My onc told me about this as good news—this is the next drug available when Ibrance quits working. As others have said, it was just approved by the FDA. There may be others in the pipeline before I (we) need it.

Bless you, Clair, and the best of luck with the new med. Sometimes, oncologists (or doctors in general) don't recognize or appreciate that, when a patient is discussing her own health, there is no such thing as a "dumb" statement or question. I really find it offensive if a doctor responds like yours did regarding the use of Google for individual research. He should be happy you are self-advocating. Good for you!! XO

Thanks... he is a sweet man from India so really takes it from me. When I know he’s getting inpatient he will say Leslie, Leslie just listen for a second..😋 I have to trust him with Verzenio states it’s more for mbc instead of breast cancer drug. It’s taken more so I’m hoping that means less side effects. I hope and pray. Will keep you all posted as it seems I’m the only guinea 🐷 right now. Good luck 👍!

Good luck with the new drug. I did not hear about it and will ask my oncologist when I go back in two weeks.

How are you doing Claire19 with the new V rx regimen?

I’ve been on Faslodex injections/Zoladex injections/ibrance for over a year now. I’m sick of side effects so my Onc said she recently went to a conference and the top breast doctors there were in debate over the efficacy of Ibrance relating to survival. Many doctors were saying that Faslodex alone might be enough. Also, these newer drugs for Er PR HER2- girls like us are emerging on the market such as Verzenio might be a better choice. Might! I am dropping the ibrance now. I’m sick and tired of being sick and tired. I’m greedy for my hair to fill in some. I’m 47 and just want to have some more energy back. I somehow feel that I’m perhaps gambling a bit here but it’s also a liberating feeling. I’m with you ladies. Xo

Clair19
Clair19
in reply to Chanty10

Hey Chanty10, I read an article as it works better for some. I’m taking Faslodex 500 mg monthly as Verzenio was to hard for my stomach. So I pray what you said about Faslodex working alone. My oncologist said we could stick with it for now. I was a little younger when I was diagnosed with stage 2, got 17 years before mets. So telling my age, I worked all through my original diagnosis, but I only had lumpectomy and radiation so not bad. I know some ladies work taking Ibrance and other treatments. I couldn’t now,but have you asked your oncologist about being so tired? I mean there is some but you sound like it’s super bad. Maybe some supplements would help if your oncologist approves. Keep me posted please and I would like to see how your doing on Verzenio.

I’m thinking of quitting Ibrance too, just staying on the letrozole, for the same reasons. I’m 42 and have been in bed for two weeks due to Ibrance. Did it make a difference to your mets? X

Hi, was just wondering how you are doing and if you decided to quit Ibrance afterall? I saw one of your other posts where you said the Ibrance was making you feel depressed... I feel it (almost immediately) did the same to me. I only did one cycle.. had my one week break from it, took 2 more capsules and couldn't stand how I felt so I stopped it for now. I am not sure I can continue with it. Hope you have been feeling better lately.

Hi Olive, I stopped Ibrance for 4 weeks, still had no energy and depression! I’ve started again now since having an okay scan result. All of this is such a nightmare. I’ve been trying to find an alternative to all of these chemicals. I’ve started more supplements and THC at night. Also soursop juice. I’ve been feeling a bit sick today but I figure if I can just throw everything at the at least I might get NED. I’ve managed to clear 3 spots from my liver.

My CT scan came back with 2 liver lesions bigger than previous scan 3 months ago. Stopping Ibrance and Letrazole and starting Verzenio when it is approved and back on Faslodex next week. What did you add to your regime to clear the 3 liver spots? I will try just about anything.

I’m not sure but I was mainly only eating avocados at that time. I’m not sure I’d recommend that though as my energy has never recovered X

Also I’ve been looking at alternative medicines lately. Cancer tutor dot com has lots of information x

What were your blood platelets counts?

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