Goodbye to Ibrance . Gutted but not s... - SHARE Metastatic ...

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Goodbye to Ibrance . Gutted but not surprised.

debbiedo2063 profile image
26 Replies

After my recent plural effusion and IPC catheter op I asked for an urgent scan and review as they were going to put me back on Ibrance .

Just had appt with oncologist today and scan shows a new area small of breast cancer on chest and couple of suspicious areas on liver. Bones stable.

I was given couple of options IV chemo or Cape tablets.

I’m going onto Cape to try it as I have never in the 12 years of breast cancer on and off had any chemo only immunotherapy.

Gutted as Ibrance suited me well re side effects but if it’s not working it’s pointless.

Would appreciate any encouragement and positive experiences on Cape.

Many thanks and love to everyone

Debra xxx 😍

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debbiedo2063
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26 Replies
Silver126 profile image
Silver126

Hi! Cape isn’t giving me any side effects, while Ribociclib (like Palbociclib) left me exhausted and I had strong dhiarrea episodes. My life is like it was in old healthy days. Just pay attention to hand foot syndrome, buy a good natural moisturizer because Capecitabine frequently affects hands and feet. 🍀🍀🍀🍀

Mumberly profile image
Mumberly

I don’t have experience with the medication you’re asking about, but I wanted to wish you all the best with it.

You’ve been through so much already, it will be nice for you to have a positive turn.

Kim

stardust1965 profile image
stardust1965

I know how you feel! I have been through two other treatments since Ibrance failed last summer. I just found out today (after three cycles) that Capecitabine is working for me!! I’ve had no side effects but the onc said fatigue can possibly get worse the longer I’m on it. My Ibrance hair is a thing of the past, my neutrophils aren’t an issue and looking back I haven’t felt this good in years!I really wasn’t keen to start Cape but it is working well and that works for me.

I hope you do well on it too.

Laskia profile image
Laskia in reply tostardust1965

That sounds very encouraging. I'm still in Ibrance but, even though I have side effects, I dread the (inevitable) day it stops working.

stardust1965 profile image
stardust1965 in reply toLaskia

Yes, it was a difficult time for me and it has taken a year to find a new treatment that would work for me. I’ve had a lot of (bone only) progression during that time but things are now starting to look better.It was hard leaving Ibrance behind but the other treatments were rough on me and didn’t work so it was easier to leave them behind. I feel much better now than when I was on Ibrance. And my hair is back to normal except that I stopped dying it which I think has made it look much healthier.

Saab900 profile image
Saab900

Hi Debbie, I have a similar story. Ibrance for 9 months or so before progression then Capecitabine. It was much easier re side effects. I got Udderly Smooth cream with urea off Amazon and had no hand foot problems. Did get worsening fatigue though but that was all. It worked for 9 months and I’m sorry it didn’t last longer as it was easy to tolerate. Good luck 🤞

Adele_Julia profile image
Adele_Julia

Hi there ! I’m not familiar with “Cape” but I am wishing you well on your next line of treatment ! I was bummed when I moved off of Ibrance myself but I’m on Piqray now and it’s kicking cancers patootie ! 🥰🙏

jersey-jazz profile image
jersey-jazz

Dear Debbiedo----It is all to the good. We are in such a fortunate position with all these choices that were unheard of years ago. I wish the stats about life expectancies would catch up with the real world as it is now. It would cheer us up no end.

Tantalon7211 profile image
Tantalon7211 in reply tojersey-jazz

I agree with you- I am recently diagnosed and had Mets on my pelvis and had stereotactic radiation- I am now starting anastronole snd supposed to steer Ibrance - and it’s hard to find good reports of how great women are doing now and enjoying life / and all the news meds that can be tried- they do need to catch up -it’s very scary - so glad i found this group and look forward to new posts

mariootsi profile image
mariootsi in reply toTantalon7211

This is a great group. It has gotten me through many difficult times. Couldn't do this MBC thing without them! Welcome

Hi DebbieSorry to hear your news, but I am sure you will soldier on with the next treatment.

Clare

debbiedo2063 profile image
debbiedo2063 in reply to

Thanks ClareYes ready for the next chapter, hope everything is good with you.

Debra xxx😍

Shafight profile image
Shafight

Curious. I’ve never heard of Cape

debbiedo2063 profile image
debbiedo2063 in reply toShafight

It’s oral chemo tablets. Also called xeloda . Looks like a few on the forum have tried it.

Shafight profile image
Shafight in reply todebbiedo2063

Thanks

Teddielottie profile image
Teddielottie

I hope you do well on Cape (Xeloda) Debbie with minimal side effects . Sending love x

Ntash01 profile image
Ntash01

Hi Debbiedo

Friday will be the end of my first week on cape and so far no issues - probs early days. I just follow instructions and pop my pills (have within 30mins of food and take 12hrs apart). Your BC nurse will go through a whole list of cons that sound horrendous but fingers crossed you tolerate it well. After the conversation with the BC nurse, I was so scared to take these pills.

I’m waiting for the hand and foot syndrome to kick in, but in the meantime I moisturise at every opportunity and continue to try and drink a lot of water.

Good luck to you :-)

N

debbiedo2063 profile image
debbiedo2063 in reply toNtash01

Thanks for this, glad you are ok so far. Reading between the lines some people tolerate it well, hope that’s me. I know it’s scary when they reel off all the side effects, but fingers xd.I start in a couple of weeks, as soon as the enzyme blood tests come back.

Take care

Debra 😍xxx

8576 profile image
8576

Well you have been off Ibrance so why not give it a chance even with the small progression. I wish I had given it more of a chance after being off 6 weeks due to radiation and surgery. There was also a slight progression so we moved to the next drug but I wish we had stayed on it to give it a chance. Just my thinking. No medical advice to back it up.

Cheers, June S.

debbiedo2063 profile image
debbiedo2063 in reply to8576

Hi Yes I’ve been off a while but they found breast cancer cells in the pleural fluid which is progression. Pleural effusion started with Covid but could be coincide. I think after 19 months I feel it’s had its day. Onc did say no reason not to move back to immunotherapy in future if things go ok.

life8888 profile image
life8888

I also had to switch from ibrance to cape! Tolerating it 🙂. Best of luck to you!!!

mariootsi profile image
mariootsi

I wish you well with your new treatment!

Missmaddie615 profile image
Missmaddie615

May this new treatment be manageable and kick cancers butt, and may you continue on this treatment for a long long time! Blessings to you!

SunShineEveryDay profile image
SunShineEveryDay

Dearest Debbie,

I’m sorry to hear about the progression. Always a shock I’m sure especially when you feel okay and have no clue.

I have heard about getting off Ibrance for 6 weeks or so and it working again afterwards. Maybe something to discuss with your onc.?

Wishing you much luck 🍀

Miriam

Totheriver profile image
Totheriver

Hope your new treatment goes well. Theresa

love2golfwell profile image
love2golfwell

Best wishes to you on your new treatment. I believe if I was in a similar situation, I would make the same choice for Cape rather than IV chemo. I think the suggestions about taking care of your hand and feet are good as several on this site have mentioned that as a concern. I hope you will do well and not experience adverse side effects. Sending hugs.

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