Ibrane long term

[marianne88]

Hi. Has anyone been on Ibrance long term and is working

[Boogitymom]

I’ve been on Ibrance since March 2016, just had CT last week, no progression of disease. Feel good most of the time considering extent of bone mets

[marianne88 in reply to Boogitymom]

Would you mind if I ask you how many of your bones are effected

[Boogitymom in reply to marianne88]

Entire spine, (I have 3 compression fractures), ribs, hip, pelvis, and femurs.

[marianne88 in reply to Boogitymom]

What do you take for the pain?

[Boogitymom in reply to marianne88]

I take Norco as needed, sometimes I don’t take it for days and then other times I’m taking it daily. I’ve just started water physical therapy and it’s helping so very much, wish I’d done it sooner

[BeckyHobson in reply to Boogitymom]

17 months and going strong. Bone scan scheduled for end of November. CT scan this July shows no signs of disease 👍

I also have a lot less pain in my spine now since I was released by doc to do yoga and meditation class. Radiation did a good job of zapping my spine and jaw but left big voids where the tumors were so I had several stress fractures in my spine and ribs.

I do have Zometa (calcium) infusions every 3 months that is supposed to be filling in/rebuilding bone where the cancer had eaten bone areas so I like to visualize that this is happening.

[Partia]

I am in the middle of my 15th cycle (month). It seems to be working. I can only hope it continues.

[BeckyHobson in reply to Partia]

Keep up the whatever you are doing because it is working great!! 🙏

[tmills64]

I have been on Ibrance for 8 months. Just tired, and always take with food. Seems to be working great. I also take Letrozole and monthly Xegia injections.

[marianne88 in reply to tmills64]

What dose do you take?

[tmills64 in reply to tmills64]

I take 100mg 21 days on 7 off.

[Jan_Schnabel1]

It's working great for me...almost a year. Bone METS only but they are extensive...ribs, spine, skull, femurs, pelvis.

[marianne88 in reply to Jan_Schnabel1]

What dose do you take?

[Jan_Schnabel1 in reply to marianne88]

I'm still at the max of 125.

[BeckyHobson in reply to Jan_Schnabel1]

That is what I’m dealing with as well. So blessed and grateful that it is not in a major organ. No femur or pelvis activity for me yet. Although I am having a really hard time with my left leg lately. Praying it is just a nerve thing and not anything spreading. Will know more after November’s bone scan

[spouseM]

Myself, 1 year. According to marker and CT scan it is working. I go for another CT this week, and markers. Then I will know currently how it is working. I am glad you asked this question, I have been curious of this myself, I dont see much response from those that have taken this much more than 1 year. Feb 2015 is the release date of Ibrance, so we wont see anyone response as taking it longer than that, so we are coming up on 2 yrs. Partia, at 15 months seems to be the first in the group (my best to you, Partia!) I guess this makes us pioneers (first group to go!). My very best to you marianne88! Michelle

[BeckyHobson in reply to spouseM]

I like “Pioneers”😊. If this treatment stops working I hope to be a Pioneer of the next New wonder drug too 👍

[marianne88 in reply to BeckyHobson]

What dose of ibrance r u on

[Partia in reply to spouseM]

I see my oncologist Friday. Ready for cycle 16. I have bone mets in sternum, spine (although some disappeared) and the sacrum and illiac bones. Lesions in my lungs too but last cat scan they were smal.

[spouseM in reply to Partia]

My very best to you Partia. Let us know how it goes on Friday.

Michelle

[Susan1953]

I am on my 7th month of Ibrance and letrozole. I also would love to hear some longterm results. My first scan after 5 months was NED. I had multiple mets in my bones at first BC diagnosis in April. My side effects have been tolerable, hot flashes and fatique at night. I pray for all of us.

[marianne88 in reply to Susan1953]

When do you take your ibrance AM or PM ??

[Susan1953 in reply to marianne88]

I started out taking Ibrance AM and have just started my 7th month and have switched to PM. I cannot tell any difference yet. I did read somewhere that taking it PM might cause less side effects.

[marianne88 in reply to Susan1953]

I started it at night. After 8 days I finally went out to store and feel human. But need a nap bad. Lol

[Susan1953 in reply to marianne88]

I feel good all day but fatigue hits me suddenly about 9 pm. I used to enjoy going out at night but that has changed!

[marianne88 in reply to Susan1953]

How long did it take to start feeling normal again after starting ibrance?

[Susan1953 in reply to marianne88]

I never really felt abnormal. Hot flashes are down to 3-4/day and tired at night are my only changes. I can deal with that. I am 64. How is the Ibrance effecting you?

[marianne88 in reply to Susan1953]

Exhausted

[marianne88 in reply to Susan1953]

What dose do you take

[darlenejulien in reply to Susan1953]

Started Ibrance last month, this is my 2nd cycle & I have had no real side effects, tired a bit. Feel good, have become some what of a couch potato (by choice). Broke ankle 2 weeks ago so I can't drive. But this is all such great news about this drug. I'm feeling more positive! I'm 63 & have an 11 mos. old granddaughter, want to see her grow up!

[BeckyHobson in reply to marianne88]

I did the 125mg for 2 months and that was really hard on my system and doubts were in the drain. Once my oncologist lowered it to 100mg it was almost instant relief and my energy level soared rather quickly. Take those naps when your body says to.

[marianne88 in reply to BeckyHobson]

Where is your mets and is 100mg working for you

[BeckyHobson in reply to marianne88]

100 mg is working excellent!! I think the Letrozole caused more side effects. My cat scan in July showed no sign of disease🎉 and my last bone scan in February showed no progression of the bone Mets. The skull spot was all but gone, my jaw about the same but hadn’t spread and my spine/ribs showed some signs of less tumor and no spread. I was recently released to begin yoga/meditation and I am so excited to be able to “exercise” again. Because of the spine activity-I was told I could not do anything that would stretch or increase the fractures in my vertebrae. And I don’t have the spinal pain that I used to medicate!!

Ibrance is a great drug for those of us that are fortunate enough to get it and that it works for.

[BeckyHobson in reply to Susan1953]

Ya what nightlife right? I used to meet up with the gals once a week after work for a glass of wine and appies but I quit drinking and I’m usually worn out by then anyway. I have purchased a group of theatre tickets though. Stage productions and bands, etc and those are a good way to get out of the house, even if I am tired, be with a friend and enjoy an event while sitting in a cozy theatre seat.

[BeckyHobson in reply to marianne88]

I take my Ibrance in the morning with breakfast and my Letrozole at 6:20pm because I have to have an alarm on my phone to remind me of that one every day.

[marianne88 in reply to Susan1953]

What dose do u take

[BeckyHobson in reply to marianne88]

100 mg Ibrance and I’m not sure what Letrozole is.

[marianne88]

Have you lost any hair yet???

[Boogitymom in reply to marianne88]

It’s just thinner but my hair stylist says there is new growth as well

[BeckyHobson in reply to Boogitymom]

Mine too 👍

[BeckyHobson in reply to marianne88]

17 months and my hair is still here. Thin and really dry but here. Because it is so dry it doesn’t get oily. To preserve my hair I only actually wash it about every 4-5 days. I get it wet in the shower daily but don’t wash it. I try not to fuss with it much. I also take vitamin A and Folic Acid supplements because I read those help with white counts and I know A helps the hair thing.

[BeckyHobson in reply to marianne88]

It thinned quite a bit but never actually fell out 😊. It is very dry so I think I will cut it shorter next time I see my daughter

[marianne88]

Good to know. Thanks so much