Just starting ibrance

Yesterday I had my first faslodex injection, and today I take my first ibrance. I’m one of those who reads all prescribing info, and it sounds identical to the warnings about the IV chemo I had before. I’m interested in the experience of other people, and how seriously you take the warnings not to floss my teeth or clean up after my dogs. 😉 And also, will I get to keep my hair? Thanks!

[Teddielottie]

I wish you well as you start on the Ibrance treatment. There are side effects , but they are tolerable . Just drink lots of water and keep moving . You will find lots of great advice on this site about handling the side effects .

My hair did thin in the first 8 months, so I had my hair cut into a short bob to make it look thicker , but there are no patches , just thinner and dryer all over . I have foil highlights too to give it more depth . Some ladies have chosen hair extensions etc , whatever makes you happy !

As to the risk of infection, just be cautious , wash hands (or wear rubber gloves ) etc , but I have never had a problem with this eg cleaning up after dogs .

I have been on it for 31 cycles and have tolerated it well so far . Hope the same for you ! x

[Hidden in reply to Teddielottie]

Thank you! ❤️

[Hidden]

Hi, I have Stage 4 MBC in my lungs and bones. I have been on Ibrance, Denosumab injections and Letrozole for 15 months. My hair went thinner but not thin in places. Other than me no one has noticed. I hope the meds help you. I feel tired sometimes and energy levels waiver. Understandable considering what we are going through. Best wishes

[Hidden in reply to Hidden]

Thank you, and I wish you well. 💐

[Arisgram]

Hi there! Good for you being informed. I have had a few systemic infections but wouldn't tie them to cleaning up after dogs. I wasn't aware of the flossing thing, so I've been flossing away. Regarding the hair (and nails) I've bought an LED helmet and wand. It seems to have done some good but both are very dry.

Good luck. Be kind to yourself. I hope it works for you a very long time!

Andi

[Hidden in reply to Arisgram]

I will be flossing too, but with care. There are some things I can’t not do. When I did IV chemo originally I was a neurotic germaphobe. Do I have to be do germaphobe IV with ibrance? There is a huge difference between a few months and a lifetime!

[Arisgram in reply to Hidden]

I am the worst to ask about this as I could never be considered the least bit cautious. In fact, I run a health clinic and we test folks for COVID.

I would say give yourself peace of mind. All the best to you on your journey!

[Hidden in reply to Arisgram]

Thanks! That is very reassuring!

[MacroMom]

When I was on Ibrance my oncologist said that because it’s targeted it doesn’t kill the barrier cells like cytotoxic chemo so, even though your counts may be low, there is less risk of infection. Hope that helps!

[Hidden in reply to MacroMom]

Thank you!

[illini9 in reply to MacroMom]

Have heard similar from my onc - Ibrance drives counts low but there doesn't seem to be a corresponding increase in infection. Now that was before Covid of course. With that I'm being even more cautious.

[Barbteeth]

Hi there

When I was on Ibrance I did notice my hair got a bit thin so I have extensions and they look good...I also colour my hair

As for cleaning up after animals...I have horses and always around dirty areas in stables...although I don’t have dogs I do have cats and a rabbit and obviously have to clean the hutch...I just wash my hands but not in an obsessive way...you can worry too much

I don’t see any reason not to floss...if it worries you then use interdental brushes instead as you’re less likely to cause bleeding with those....good oral hygiene is very important !

I was on Ibrance for over a year and never had any infections or viruses during that time...just carried on the same....went on flights as well and no problem

All the best

Barb xx

[Hidden in reply to Barbteeth]

Thank you! That’s great!

Sharon

[Titaniam_Turtle]

My hair thinned but did not fall out noticeadbly to anyone but my hair stylist and me. Mine did get quite dry and frizzy though. If for some reason I took my letrozole without the Ibrance my joints hurt from the knees to my toes. Other than that I can't really remember anything else. I was on it for 42 treatments, 3 weeks at 125mg and 1 week off. I had to go off to get a second breast cancer treated with chemo and radiation. I finished chemo in February and radiation for the third time a few weeks ago. They said I could go back onto Ibrance after 4-6 weeks of healing. It worked great for my MBC. The lesion on my spine never grew any bigger than when we originally found it. I was tired sometimes, but after chemo and losing hair, 1 and 1/2 eyebrows , eyelashes, all fingernails and toenails, Ibrance was a dream! No infections and I was not as vigilant as I have been with Covid-19. Also chemo destroyed my taste buds and I could only eat 2 things for 6 months. I lost between 70 and 80 pounds during chemo. I can't really complain about that because I had it to lose! Chemo honestly gave me the most side effects of anything. It caused fluid build up around the outside of my lungs. I was soooooo out of breath during the pandemic. Fortunately ,they found it, drained it and I felt like a new person. It was tested and did not come back cancerous. Sorry for too much info. I just hope maybe something can help someone else. I had no experience with any of this.

Andrea

[Hidden in reply to Titaniam_Turtle]

I have to say of all treatments I’ve had, radiation was the worst! I understand about the tastebuds. When I was doing chemo I was not able to drink coffee because it tasted so bad, and coffee is my comfort food! Never too much info, by the way. They say you should share your story, because you never know when it will become a page in someone else’s survival guide! Thanks.

Sharon

[Blakeysangel]

Hi,

I started Ibrance 5 weeks ago. Started on 100mg as my scan before starting was stable and also because I had surgery to have my lymph nodes removed in Feb and had a funny turn a few hours afterwards and was unresponsive for 40 mins and had to be defib’d, they don’t really know what caused this. Felt ok, just a little nausea but neuts after 2 weeks were 0.7 so had a break, took 3 weeks to get back to 1.2, restarted Wednesday at 75 mg with a view to maybe increasing it back up if neuts stay good. I’m taking mine with Letrozole. Hope things go well for you 😀😀

[Hidden in reply to Blakeysangel]

Yikes! That sounds like a rough go! I hope things get better for you. That was very quick for a drop like that. I took anastrozole for three years. My cancer modified itself from 99 percent ER positive to only 2 percent, but they put me on faslodex anyway. Almost three years on anastrozole left me with a lot of vagina and bladder discomfort. Good luck with your treatment!

Sharon

[Blakeysangel in reply to Hidden]

Hi,

Things after my operation and funny turn got better quickly, I’m just very conscious of how I felt before it happened so if I feel that sensation again I know to get help quickly. I,m hoping the Ibrance was just a blip and the 75mg will be fine, it’s only my second treatment in the 2 years since stage 4 diagnosis( medication treatment), I was on a trial drug for 18 months. I’m sure you,ll be fine 😀😀😀

[Hidden]

I tend to just read the side effects so I don’t panic if something new or weird happens. There is nothing wrong with reading it all and if it means someone else will clean up the dog poop then definitely use that 😉

I struggled with Ibrance and Letrozole combo. I seemed to be the odd one with my issues as everyone else seemed to function well while I was chronically fatigued and could barely function. I didn’t have any hair loss but my head did itch like crazy.

I have recently started chemo with Abraxane and I am tolerating it much better than I did the other. I guess it all depends on the person. Of course chemo did make all my hair fall out but I don’t mind that.

Good luck with your treatment.

[Hidden in reply to Hidden]

Thanks. Yesterday was my first day. A little heartburn and diarrhea, but I took a nap in the afternoon and waking up from it was like coming out of general anesthesia! Good luck with your chemo. I hope it works for you.

Sharon

[Quiltersue in reply to Hidden]

I’m with you Sarcie, this week was to be 4th round w Ibrance and Falvestrant. But I’ve such bone pain we’re going to do radn x5 next week. However Dr gave me the Falv needles. I thought I was going to DIE! I had 48 hrs of excruciating pain 15/10, so bad. Never EVER have cried so much, I’m not a crier, but 45-60 mins of crying out was unreal. Everything aches or hurt, muscles or bones.

Called Palliative dr first in am,( why is the absolute worse >< 11-7 am..??!!!). Adjusted morphine and steroids... I’m better today but, not certain I’ll do that next month, and I am Very Strong!!!!

What the heck was that all about???

[Hidden in reply to Quiltersue]

Oh no. I’ve only had letrozole. That sounds like the pain I had before diagnosis. I would definitely be asking your oncologist what is going on. You can’t function like that.

[mariootsi]

I have tolerated both well, but my hair has thinned terribly. Every one is different, so I wish you luck as you proceed. I hope you don't have side effects.

[Hidden in reply to mariootsi]

Thank you. I don’t have a lot of hair to begin with so I can’t afford to lose much!

Sharon

[Hidden]

Hi SeekersRoad (I like your name! ),

I'll just add to the others' responses by saying that I'm finding this treatment (Faslo + Ibrance) to be very easy. Even better than Letrozole + Ibrance was, and that wasn't bad either. Does my hair look a little out of sorts? Yes! And I have some fatigue. The biggest "issue" for me is low neutrophils (sp?), but that's a number on a lab report, does not affect my life, e.g. I don't get sick.

I'm with you on reading up on all of the details (info is always a good thing! ), but I hope you have a great experience with it and many years of success!

[Hidden in reply to Hidden]

Thanks! SeekersRoad is the name of a blog I keep. I hate having to think up screen names. Not sure why it’s necessary. I’m glad the low counts don’t result in illness. I have a lot of family living with me, including two preschoolers, who also go to visit other family, so I have a lot of exposure. I’ve generally had a strong immune system so I hope that remains. When I did chemo I got a Neulasta on pro after every treatment and my blood counts never dipped.

Sharon

[hdhonda]

Dear Seekers,

I am on Letrozole/Ibrance and guess I didn't read all the directions. I floss my teeth/clean up after the dog. Not suggesting that you do, I am suggesting that folks who can read have an advantage over other folks. My hair has thinned some but I don't need a wig. Good luck. Blessings, Hannah

[Hidden in reply to hdhonda]

This was in a hand out sheet my doctor’s office gave me. I don’t think it is in the manufacturer’s information. You guys have been very reassuring, thanks.

[viennagirl]

Hi SeekersRoad. I take Ibrance and Letrozole. I am just finishing cycle 13. I have brushed my teeth and my gums vigorously with my electric tooth brush all during this time. I floss every evening and I have never had any problems. I think if you start out brushing your gums and teeth vigorously you will have much stronger gums. The blood that comes to those areas are probably very healthy. I am not a doctor but when I was told to brush gently I just felt it was the wrong advice. So I am happy with my healthy gums, teeth and mouth. I don't have any mouth sores - sometimes tiny bumps that go away but never any open sores. So you should follow your own instincts but I know my hygienist is impressed with my healthy teeth. Hugs to you and I hope you have a easy time with your healing journey. Hugs Marlene

[Hidden in reply to viennagirl]

Thanks Marlene. I have also been doing the baking soda rinses morning and night, and my mouth seems to be pretty happy with that routine! I had mouth sores during chemo and I do NOT want to have them again!

[caw517]

Hi! Hoping I can be an encouragement. I have been on Ibrance for over 4 years now. I had been on a combo with exemestane and then a combo with letrozole but as of October began a combo with Faslodex. I did well for the first 3 years and then scans showed some progression but since changing the combo to Ibrance and Faslodex, I have been doing well again. I have had some hair loss but it has only just thinned it a bit. My counts -- white blood cells- have dropped numerous times so that I am on 100 mg now. They still drop so every once in a while my onc will give me a week off to build them up again. That seems to work. On my week off from Ibrance I do experience quite a bit of fatigue but hey -- I can manage that if this drug gives me years!! The Faslodex injections cause me some pain for day 1 and 2 -- the nurses joke that it is worse since I am "tiny" in the butt. but by day 3 I am doing good again. Hope this all helps. And I pray that these drugs give you a lot of good days-- and years !!!!!

[Hidden in reply to caw517]

Thank you! It is interesting that they take you off the medication to bring counts back up. No neupagen or neulasta then?

[caw517 in reply to Hidden]

No . My onc doesn’t think neupogen helps in relation to ibrance. I’ve heard the same from others. But a week off definitely helps.

[caw517]

Oh-- and one more thing. I have flossed this whole time with no issues. The only thing I have done is when I had "work" done-- not just a cleaning , my onc had me off Ibrance for a bit. and then we started it up again. I also take antibiotics when I have work done.

[Hidden in reply to caw517]

I do have a bit of work I should have done, but I have been putting it off due to covid. 😕

[Hidden]

Thank you Sandra! I look forward to getting to know you as well!

Sharon

[illini9]

Such great comments above. I've been on Ibrance for 54 cycles and I loved reading everyone's experience and advice. I have never heard of the dog thing and we've had a dog now for two years. I do clean up after her but always wash up when I get back inside. As for dental care it's most important that your dentist knows your drug protocols. I've been xgeva four years and remind them every time I go in for a cleaning. They are much more knowledgeable now than before as to different cancer drugs and impacts on the mouth.

I had IV Chemo (AC) first and it certainly was far more aggressive in terms of impact to white blood cells and I did take neulasta then. But those counts were so very very low. With Ibrance they will ride low but not like IV chemo low. Practice good hygeine and be cautious. We still do all the things I did before but sometimes modify - like when I fly (pre-Covid) I always wore a mask and wiped down the tray. Or in a hotel I'd have wipes for the remote and door handles. Stuff like that.