Ibrance : I was just diagnosed with... - SHARE Metastatic ...

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Ibrance

I was just diagnosed with stage 4. I did 8 rounds of chemo and 33 radiation treatments but it now spread to bones, lungs, lymph nodes and chest. They want me to start taking ibrance. Can anyone taking it let me know how you feel about it and are you able to work on it?

Thanks,

Kim

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I have been on Ibrance for 18 mo. The only thing I noticed is thinning of my hair. I also have a low blood count and feel tired a lot. But from talking to others on this site these are normal reactions to any of the chemo meds. I think you will be fine on this medication. You

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Thank you so much! Makes me a little less worried. 😃

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I have been on Ibrance over 2 years. My Mets to lungs are stable. Also take letrozole. I do get fatigued but it comes and goes sometimes pretty bad. I work full time and function well but often come home and just want to go to sleep. And often that’s just what I do. My white count is low but bounces back after week off. Only had to stop taking it once because of low count. My hair, which used to be thick and wavy, is thin and wispy. Used to dye it (iits pure white) but let that go after chemo in 2014. I put purple highlights in it and use a shampoo that thickens it a little. Keep it short and sometimes use a styling paste . Makes me feel less of an old lady (I’m 64) and gives people something to talk about. I try to eat and juice lots of greens and am trying to cut carbs for more energy I Take a multi vitamin and some other supplements. Last summer I travelled all over Europe for a month, so the side effects didn’t stop me. You learn to pace yourself. Ibrance seems to be working well for me and the side effects aren’t to where I’d ever stop it. I get some joint discomfort but think that is from the letrozole. Also comes and goes. Hey I’m alive and all in all have good quality of life. Hope it works for you too!

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Thank you so much! I went through a lot with the chemo and radiation. I was neutropenia after my first chemo treatment, then got a staph infection and then c-diff so I had a hard time and was worried about ibrance but you made me feel better about it. Hope it continues to work for you!

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Kmzk, how are you doing on Ibrance?

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Hello, nstonerocks!

Would you mind sharing brand of shampoos you are using? Have you noticed any positive results?

I am on the same regimen as you and, after just 3 cycles of Ibrance, notice so much more hair in hairbrush, on shower floor, etc. I've started showering less often to lessen the impact but wonder how much hair loss to expect in months to come?

Thanks for sharing!

Linda

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Hi Linda,

I have tried 2 of the more inexpensive thickening shampoos: Loreal Ever Strong in a green metallic-like tube, and Pantene Sheer Volume, in a clear plastic bottle. I like the Every Strong, but the packaging is a bit difficult to work with: the cap keeps opening up, and stiff tube a little hard to squeeze shampoo out of when it is less than half full. I have to stand it upright in the shower shelf so it doesn't ooze out. It also has a conditioner, which I like. The Pantene is ok. Bought it because the packaging is easier to deal with but don't like is as much as the L'Oreal. I noticed after I towel dry my hair it looks fuller if I blow dry it a little and then "style." I keep my hair very short. I often use a styling paste, "OriginalMineral C Paste, which is fairly expensive ($25.95 at my salon). A tiny bit goes a very long way, otherwise your hair will feel like concrete. It is very helpful in shaping and spiking or "piecing" the hair (especially bangs). I don't wash my hair daily anymore, unless it is weighed down by the paste. I had very thick hair and now it's a joke. At least I still have some! I also notice there are times I see it on my sweater and shirt. I used to color it (went grey/white early), but as I mentioned, only do purple partial highlights now. I don't think showering less will help stop the hair loss. I notice a change in my nails too. They are dry, more brittle and have vertical lines in them. I did go for gel manicures for a while, which looked great, but they superficially "scrape" the nail to get the gel to stick, so I gave that up and am waiting for my nails to get to the point where I will polish them once again wutg regular polish. I moisturize my skin. Besides getting old, I'm sure these meds affect that too. My eyelashes (which were never thick and lush) are stubs, but nothing noticeable. I use a base, blusher and a nice red lipstick, which picks me up and definitely makes me look better (aging +chemo=?). IF I want to get fancy, I use a brow pencil and some eye makeup. When I look better, I feel better. I was never "glamorous." In fact, got my first every manicure last year! But now I treat myself to facials, massages and products that work for me within my budget. I am also restarting Omega oil supplements, maybe that will help.

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I also read that supplementing with Biotin helps both hair and nails. I've starting taking that daily. Thanks for brand recommendations! Linda

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I also don’t wash my hair daily anymore (this was a weird feeling for me since I’d always done it daily). I get it wet most mornings in the shower but only actually wash and condition it every 4 days or so. I use the blow dryer on the medium heat setting but no straighteners or curling irons.

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About 6 months ago I started using a conditioner that has Nioxin in it and have seem remarkable new hair growth.

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Becky, what is the name of the conditioner? Thank you! Linda

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Nioxin has their own conditioner under that name. I I am considering getting in touch with the specialist to has a With electrodes on it that supposed to stimulate hair growth for people that are thinning hair I don’t have a lot of information on that right now but I’m looking into it. A good friend of mine who had serious liver problem in her hair started sending started using it and she said it made a dramatic difference in her hair definitely is growing now she’s not on chemotherapy so I am not sure what the difference would be but it might be worth a shot. Although it’s quite expensive when I get more information I’ll let people know.

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I am still dying my hair. I’ve only been on my Brandts of my second month. My hair is definitely thinning and I haven’t decided what products I’m going to use at this point. But I don’t see me letting my hair go gray. I guess I’m just too vain for that 68 and having a husband that’s 11 years younger than I am I don’t wanna look like an old lady. So I figured that out in the near future. I do shower every day but I am now putting a shower cap on the day in between when I don’t wash my hair. Washing my hair seems to really have it fall out I’m not noticing it falling out on it’s own

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I also now very lightly blow dry my hair after washing on low heat and not completely dry to give it a little more fullness and that does make a difference

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I’ll look as soon as we get home in a couple hours 👍

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It is by ogx. It has niacin3 & caffeine in it. I put ogx conditioner niacin in the Amazon search engine and it popped right up. Squatting champagne colored bottle with a gold flip cap. I got it off a clearance rack at Fred Meyer for next to nothing but I will pay the good money they want when I run out.

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My latest wbc was 2.6 which is pretty low. and I was told it wasn’t too low to restart Ibrance after week off. Last cycle I was exhausted but feeling better by the time I restarted it. You’ll have regular cbcs done. I get blood drawn during week off. They look closely at your neutrophils to make sure your counts are going to be ok. I work in a middle school and am exposed to all kinds of germs and have done well. I did have an early case of pneumonia back in December but the flu was rampant and people were getting pneumonia’s with it. I did not have the flu and recovered quickly. I do advise you do whatever you can afford in terms of dollars and time to reduce stress. I get a massage once a month. Try to eat well. Trying to get a meditation practice going. Helps with optimizing immunity. Good luck!

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Hi, Kim!

I am about to start my fourth cycle of combo Ibrance with Letrozole (diagnosed Stage 4 in November after being breast cancer-free for 17 years). My primary side effect with Ibrance was its impact on white blood cell count which tends to drop, sometimes severely. I have had the Ibrance stopped for a few days on two different cycles, but am still on the 125 mg dosage.

Other than that, it hasn't been a terribly difficult regimen.

God bless you and shine His healing light down on you, Kim! Your are in my prayers! XO

Linda

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Thanks Linda! You are also in my prayers.

Kim

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Thank you, Kim!

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Take the Ibrance!! Wonderful drug that has worked great for myself and others at stopping the spread of tumors to new locations. Relatively few side effects once they get the dosage dialed in. I started at 125mg but that was too much for me so scaled it back to 100mg and I’ve been on it 2 years this coming May.

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Wow! That is awesome Becky. Praying for it to continue to work.

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I started Ibrance in December 2017. My platelets, WBC, and hemoglobin are low, but not too bad. They seem to go up a to close to normal on the week off. I am a swimmer and a synchronized swimmer as well as a teacher. I am able to do everything, except not as much as before. I get fatigued. Otherwise, I feel pretty much normal. I haven't lost any hair yet, but I do have the soreness on my scalp that came before losing my hair during chemo. That comes and goes.

I think that besides a good diet, being active seems to help. You just have different limits than before. That part is difficult for me. At this time, I am learning how to train with anemia.

I've had two PET/CT scans since starting Ibrance with great results. Hoping they stay that way. Best wishes on your journey.

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There is HOPE!!! I have been on IBRANCE since Feb. 2018, worked everyday!! I am also on Fluvestrant. Good Luck to you, but most importantly---God Bless you!!!

Shirley

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Thank you for hope. I’m on my second cycle of Ibrance. You all have given wonderful information. So glad to have found this site.

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