Mo betta!! Yay! Lower Ibrance & Faslodex

[Stinkinpinktink]

Just wanted to update everyone on the difference in my side effects and quality of life since my MBC regimen was changed!!

I am no longer on exemestane (an AI). I am now on Faslodex injections. Also my Ibrance dose was lowered from 125mg down to 100mg.

The difference in my side effects is SO MUCH BETTER!! Before I had debilitating fatigue, achy joints and muscles, fingernails wouldn’t grow, hair falling out by the bushel. I was having constant anxiety just trying to cope! Had to stop working part time. It was AWFUL. My brain didn’t feel like me!

Only made the change a couple weeks ago and the difference is amazing! My body feels better, my brain feels better, and I’m back to working part time! What side effects I do have now are tolerable and manageable. I also got a short hair cut because my long hair had gotten so dry and brittle!! Nails are growing again, hair looks so much healthier. I hope this keeps working for a long long time because this I can do!

God bless you all, my fellow warriors!

[nstonerocks]

Love the pic

[Stinkinpinktink in reply to nstonerocks]

Thank you! I’m not the best at taking a selfie but it’s a good shot of all my mermaid-y stuff 😂😉

[Red71]

I love the pic and your hair looks great! I cut mine short too and then it started getting thicker. I’m so glad you are feeling better!

[Stinkinpinktink in reply to Red71]

Ok good to know, I was hoping the haircut would give me a fresh start. Yes I am feeling way better! Thank you!

[4thTimesTheCharm]

LOVE the short hair-do! CUTE!

And yes, the exemestane was a killer for me too. Faslodex and Ibrance are working for me as well.

More power to US ALL!

[Stinkinpinktink in reply to 4thTimesTheCharm]

Yes it’s such a relief. I hope it’s as effective! How long have you been on the two?

[Hidden]

Lower dosage alleviated my crushing fatigue. Good for you.

[Stinkinpinktink in reply to Hidden]

Yes idk if it was the exemestane or the Ibrance; either way this is way better. I didn’t work for three weeks the fatigue got so bad! I was able to work the last two weekends and it sure helps my mental health!

[Arkait]

So glad you feeling better on lower dose think most meds are

prescribed in higher doses than needed. I cut back on my heart

and blood pressure meds a lot ,gradually, post op , and it didn't hurt.

[Stinkinpinktink in reply to Arkait]

Thank you! What MBC drugs are you on?

[Godbeforme]

Congrats on getting your life back! I had your same haircut and loved it, just recently went to a full-blown pixie ha ha ... it's easier for me to highlight and pull through the cap as I must have my highlights! I love the mermaids! God bless you and heal us all in Jesus name, amen! So nice to read some happy news! <3 xo

[Stinkinpinktink in reply to Godbeforme]

Thank you so much! Oh my gosh you reminded me of a good memory as a teen, highlighting my mom’s hair with the cap!!! Hahaha! I didn’t know they still made them! God bless you too Sis!

[Godbeforme in reply to Stinkinpinktink]

I'm always doing something to my hair; my mama was a beautician so it was inherited! People are scared of doing their own hair but I will tell you one thing, I've never made myself cry but I have run out of beauty shops almost in tears! Have a blessed afternoon or nite nite depending on where you live as so many are in the UK; Texas here ... God bless you sis and heal us all in Jesus name, amen! <3 xo

[Stinkinpinktink in reply to Godbeforme]

I’ve had the opposite, ruining my own hair!! Haha! I’m a California girl, born in San Diego but live in the Bay Area over thirty years now. I work at winery! They have been so supportive of me!

[Godbeforme in reply to Stinkinpinktink]

That's good, I'm glad you work for and with good people! What a blessing that is!

[Sugarbaker60 in reply to Godbeforme]

You bleach your hair???! I am about to go mousy brown all over due to fear of doing foil highlights. Ibrance and Faslodex hasn’t really affected my hair except really dry....pls share more about how you have done it!!!! I don’t want to be brown hair...I have been blonde for 46 years...

[Godbeforme in reply to Sugarbaker60]

don't do the foil, use the pull through the cap and I like petite frost. I am quite happy when I only do the front, then I actually get two treatments out of the box <grin>.

[mariootsi]

So glad you feel better! Beautiful picture and your hair looks so nice!

It seems so mamy here have to take lower doses of Ibrance!

[Stinkinpinktink in reply to mariootsi]

I’m not sure, but I feel like the exemestane was the big culprit. Absolutely awful. Listen, it’s not to say I don’t have any side effects, because I still do, but dramatically better! I can handle this. Prior I was having terrible anxiety every day. The fatigue was debilitating! Haha thanks about the photo; obviously I’m a terrible selfie taker!

[NPmary]

Love your hairdo, you are looking great! So happy for your news.

[Stinkinpinktink in reply to NPmary]

Awww thank you!! I’m still getting used to the short hair but it’s so much easier and looks a whole lot healthier. My long hair was getting so dry and brittle and falling out. This is much better.

[Cafeole2]

Yay!! I’m also loving my Faslodex and Ibrance 125mg treatment the last 7 months. Like you, my hair and nails thinned, hair cut short for the first time in 50+ years. Friends/family say I look younger. I started taking vitamin D3 and B complex which seem to be helping hair and nails. God bless all you sister warriors.

[Stinkinpinktink in reply to Cafeole2]

Yes last time I had short hair ever was as a toddler haha and my first cancer camp in 2010 when I had no hair! Nine years later the bitch came back. I’m feeling pretty spunky in my new ‘do!’

[Francesca10]

Glad you have found a new you. You look so pretty.

I chopped all mine off also and I felt so free of the longer hair maintenance😄

Unfortunately, ibrance wasn’t for me. I am one of the ones who had an allergic reaction. Been off all treatment for two weeks now. See doc tomorrow. Right now I am calm- hopefully whatever he is thinking of giving me will be ok with me.

Continued renewal to you- go woman!♥️♥️♥️

[Stinkinpinktink in reply to Francesca10]

Keep us posted on what’s next for you! I know there are lots of options aside from the Ibrance.

[Sister3nkc]

This is wonderful news! Love your picture!

I have been on Ibrance 125mg for FOUR years. Debilitating fatigue. I had labs drawn on Monday and my ANC has dropped to 0.7. Seeing doctor tomorrow . So providing the scans are good i may be able to lower my dose also.

[Stinkinpinktink in reply to Sister3nkc]

Yes Sis, debilitating fatigue. Idk if it was from the exemestane or the 125 Ibrance, all I know is switching to Faslodex and 100mg Ibrance has made a huge difference in just two weeks. I was getting anxiety every day feeling so immobilized by the fatigue. I hope you’re able to switch and find better quality of life. My brain feels better too. What else are you on? That could also be contributing. Hope your appt goes well and changes can be made!

[RLN-overcomer]

Sister warrior I see Lord/God has made a way. I am so happy you are feeling better, since the lower dose of Ibrance. I am praising our Savior XoXoXo

[Stinkinpinktink in reply to RLN-overcomer]

Yes Sis, absolutely! I am a witness to all the blessings that continue to fall upon me despite this plague!! He IS worthy to be praised!!

[Mindysooty]

We all love to hear good news stories. So pleased you're feeling so much better. Great pic and your hair looks pretty. Best wishes. Josie x

[Stinkinpinktink in reply to Mindysooty]

Thank you Josie! I’m so relieved. It’s not to say I have no side effects but dramatically better and manageable!

[needabreakfromcancer]

I am so frustrated as I have been complaining for months and months about vision and balance problems with my oncologist. Found out on my own that exemestane can cause these two issues, but my oncologist apparently was not aware. I talked to the pharmacist that said that these issues may not go away! I'm sorry but our doctors need to be more aware of the side-effects that they order for us.

I also wonder what kind of kick-backs they get from Big Pharma.

[Stinkinpinktink in reply to needabreakfromcancer]

Yes I had those issues too on exemestane, along with so many others!! It was awful. I hope you can make some changes. I’m not thrilled about the faslodex injections but way way better than everything I was experiencing on exemestane!! Good luck to you Hon! I feel ya!

[needabreakfromcancer in reply to Stinkinpinktink]

Did you regain your sense of balance? I am terrified that it won't come back. I had polio, all three viruses, spinal, lung and muscular. My bulbar (brain stem) was affected so this is very scary for me. Fluvestrant and Ibrance did not work for me. I actually am using Metformin on my own and it has gotten rid of a skin cancer on my stomach (in a week) and it appears that it may have killed a met on my liver. However, my doctors keep insisting that Metformin doesn't work. How much do they get back from Big Pharma?

[Stinkinpinktink in reply to needabreakfromcancer]

Well my balance was affected by my first go round in cancer camp over 8 years ago. After phys therapy it got better. Then starting treatment again it got worse again. Since making the med switch recently, it’s way better.

[Lolabazzle]

Your hair looks great and I am so happy to hear changing up the meds a bit help a lot! I have an oncologist appointment tomorrow and will discuss it with him. I have only been on IBRANCE one month and my whole body is so dried up and my hair is falling out by the handfuls. Best wishes to you!

[Stinkinpinktink in reply to Lolabazzle]

Yes I’ve read several folks say the 100mg Ibrance is just as effective as the 125. Also I switched from exemestane (daily AI) to faslodex injections instead. These changes have lead to dramatic reduction in my side effects! Even my brittle fingernails are growing back. Good luck!

[AuntyJane]

Congrats! Always so encouraging to read posts like yours! My struggle has been low WBC 1.0 and ANC drops to 200 or 500. Did lower dose make any difference in yours?

[Stinkinpinktink in reply to AuntyJane]

Yes my WBC is now at the very bottom edge of the normal range. It’s amazing how much it has helped the extreme fatigue I was having. I hope the new combo is still working to keep my bone mets stable or even better shrink! It’s kinda weird, I feel so much better but now a part of me is questioning is it still working? Somehow when I was sicker and absolutely down for the count, I was like this MUST be working. I know, I’m goofy.