Hi-I’m new here...

[JustmeMary]

I am 56, diagnosed with MBC in July. Started Ibrance and letrazole a week ago. I feel fine so far....when should I expect to start to feel some side effects? Not sure if this is related but my scalp has started to feel itchy.

[Lulusue]

Good Morning JustmeMary,

Welcome to the group. I have only been a member for a week and everyone has been lovely. It’s awful we have to be here but really good we can speak with people who accept us with love, kindness and understanding.

I am on Ibrance too but with Anastrozole and I don’t have any side affects apart from a little tiredness in the afternoons. I have been on it 21 months and thinking back I think I did have a few itches to start with. Any other side affects seem to be coming from the Anastrozole and not the Ibrance. What dose are you on?

I hope you are having better weather than us in the UK, it feels like it’s been raining forever and I just want to go for a walk in the sun- warm my bones!

I hope your treatment goes really well and you get no other side affects, please keep in touch and let us know how you are getting on. There is so much knowledge on here and everyone is happy to answer any questions and pass on their experiences.

Much love

Hazel

[JustmeMary in reply to Lulusue]

Thank you kindly for your response, Hazel. That is very encouraging to hear you’ve been on it for many months without serious side effects. I am on 125 mg. I hope my experience is the same. Our weather has been really very nice here in this part of the country. I live in the northeast and winters are long so we’re grateful for a beautiful summer like this has been.

Take care,

Mary

[MCBS in reply to JustmeMary]

Welcome ! My scalp did too itch when I started the same drugs as you two years ago!

[Red1246 in reply to JustmeMary]

Hi Mary!

I’m on the same meds though 100mg Ibrance and, other than having developed some mouth sores (easily remedied) and fatigue, I’ve done quite well on them. I do take more than a week off some cycles when my white blood cells haven’t reached the right numbers but ne er more than two weeks.

The reports I’ve read on this drug combination are very promising and some people have tolerated them for several years. I’m hoping you’ll do well and as someone else mentioned, there are all sorts of remedies for any side effects you may experience. And many different drugs if these two are not tolerable.

All best to you!

Kathleen

[mariootsi in reply to JustmeMary]

Mary, welcome! Sorry you are here, but glad you found us. We are here for each other. Great group of amazing women.

I am on Ibrance and Faslodex shots. Started out at 125mg Ibrance, then changed to 100mg because of low plateletes. Just know , if any issues develop, which I hope they don't, but if they do, Ibrance has 3 doses of 125mg, 100mg and 75mg.

Each dose is deemed to have good effects.

I wish you well in your treatment and let us know how it is working out. Also, with Ibrance, there is room for different schedules that are as effective. I am on 3 weeks on and 2 weeks off so my platelets and wbc to recover. So far so good.

[mariootsi in reply to JustmeMary]

I live in Connecticut. Where are you?

[JustmeMary in reply to mariootsi]

I’m in upstate New York on Lake Ontario

[hopenowandtomorrow]

Welcome JustmeMary! This is a great group of MBC women from all over the world. There are many smart, funny, hope-filled & sad shares in this online community. Feel free to inform, vent, & ask. Someone is sure to provide helpful responses. Every BODY reacts differently to the meds. I’m on IBrance & Faslodex & Xgeva (quarterly for Bone Strengthening). Drink lots of water so you hydrate well when taking IBrance. Take good care of your scalp & skin to avoid the dryness. If you have other side effects, you can search the past posts to see the wealth of Solutions/remedies that have worked for others. All the best in your treatment & results. ❤️🙏❤️

[Hidden]

Hi Mary,

Welcome to this site. I am not on ibrance, so can’t offer any advice on that drug. My conventional treatment includes letrozole, zoladex and zometa. That’s great that you are not experiencing any bad side effects so far from your treatment. Your itchy scalp may be a side effect, but I can’t say for sure. I would mention it to your oncologist if you are concerned about it.

Take care,

Sophie

[Kiera49]

I was on Ibrance, didnt have any problems on it, I was on 125 mg as well, I wish you all the best

[Hidden]

Hi JustmeMary,

Welcome to the community!

I did really well on Let + Ibrance for almost four years, then switched to Faslo+Ibrance (two years, and counting) and am doing even better (i.e. re: side effects).

Let + Ibrance gave me fatigue and joint pain, but nothing too bad, especially in light of the life-extending effects of the drugs! (If side effects hit you, I'd def keep things in perspective! ). Did my head itch at the beginning? I'm not sure...but my hair definitely suffered, aesthetically (!), but I quickly learned not to sweat that one...

I'm wishing you many good years on this treatment!

Best,

Lynn

[JustmeMary in reply to Hidden]

Thank you for that Lynn.....I’m glad I joined this group it’s extremely encouraging so far 🙂

[Beryl71]

I started in April am on fifth month, no side effects so keep your fingers crossed. I've just felt so much better since starting treatment. We're all different, good luck. Carolynx

[pinkrv]

Good morning Justme Mary

I am also relatively new here. Glad you found this group of helpful ladies.

I did have a terrible itchy scalp at one point in the cycle of Ibrance 100mg. I have only finished one cycle of 100mg. I am on day 5 of Ibrance 75mg with letrozole and Zometa.

The itchy scalp went away after a few days. I wish you all the best. Be sure to drink water.

Diana

[Maludagui]

Hello 👋 I am very sorry that you are in this situation. This group is wonderful. We all help and support each other 100%. I live in Houston but I am from Venezuela. A pleasure to greet. The first thing is to have Faith 🙏 God does not abandon us. I am 52 years old and have Metastasis in the hip since August 2018. I am with Ibrance Letrozole Xgeva and Zoladex. Don't think about the side effects. Think of it as the medicine that gives you life. Just ask how to combat those effects when you have them. I use conditioner after shampooing and try not to touch my hair. To the touch it bothers me a bit But I don't do anything else. A hug from a distance. Ohhhh i on cycle 22. 🌺

[SunshineBoss]

Hi. I’ve been on Ibrance with faslodex since May of 2019. Your hair may thin a little but the biggest side effect I’ve had is weak fingernails. It was very upsetting bc I’ve always had strong nails. I started taking biotin and that has been a big help. Recently my toe nails have been having problems. One of them just fell off! Not sure what’s going on with them but I see a foot doctor next week. Hopefully you won’t have any side effects! Good luck! ❤️

[Hidden]

I’m on the same meds and have had them for 18months. I also have some irritation to the scalp. You may feel tired and a little irritable at times. Also, there is very slight hair loss. You may feel some joint pain.

Some mornings I feel a bit sick but it soon passes. I feel content to take this combination at the moment and you may not have any of these symptoms. Just make sure you drink plenty of water and keep your skin moisturised.

Hope this helps you.

Welcome and best wishes

Cheryl

[JustmeMary in reply to Hidden]

Thank you Cheryl....I see you have the infusions once a month. My oncologist suggested I do that but I’m not sure I want to. How’s that going for you? My sister passed away with MBC about a year ago and I remember her talking about this treatment that ended up giving her a hole in her jaw.

[Hidden in reply to JustmeMary]

Hi, I had to come off the Denosumab injections for 7months as I had a tooth extracted and was given an injection a week later that caused osteonecrosis. I now have a gaping hole in my gum after the removal of five small bone fragments. After a year I now have a small piece of protruding jaw bone in the same place. Strangely enough I went to the dentist yesterday as I have toothache again but she couldn’t find anything wrong. She feels it’s a sensitive tooth.

I’m on the emergency list again and have been for three months to have this other piece of bone looked at. My dentist has been great. She was checking me every two weeks before the virus. She referred me to the Cranial/Facial Consultant. He shouldn’t have discharged me after the bone removal and kept a check but I guess that’s how it works now.

It’s a rare thing to happen so please don’t be put off but your poor sisters experience or mine.

Take care

Cheryl

[Sky_Writer]

Hello JustmeMary! I never thought about it until you just mentioned it, about scalp itch. Not severe, but definitely there sometimes.

I take Letrozole, and occasionally it does cause me bone pain (more ache than pain) in my feet. Keeping moving has helped.

[Hidden]

Hi justbe Mary. I've been on letrozole since January. The only side effects I have had is my hair thinning a bit and dry skin. I had 2 huge tumors that have shrunk a lot and so the medication is very good. Hope all goes well for you. Please keep in touch as to how you are.

[Bexly]

Hi Mary!

I've been on 125mg. of Ibrance and 2.5 mg. of Letrozole for 2years. No side effects of concern. I am very rigid about taking both meds at the same time every day. Letrozole at lunch and Ibrance at dinner.

Wishing you the best!

[Teddielottie]

Hello ! I wish you well as you start this protocol and I hope it works as well for you as it has for me . I too am 56, was diagnosed mbc de novo December 2017 (bone mets) , and have been on Ibrance 125mg /Letrozole ever since . I have had various side effects over the last 2 1l2 years but have tolerated it well so far , and have been stable . I take both my pills after my evening main meal around 7 pm and drink lots of water all day (very important! ). For an itchy scalp I have applied Aloe Vera gel at nighttime , it seems to soothe it . I get some stiffness in my hip/knee joints from the Letrozole too, but I take a glucosamine tablet daily for this . I had hair thinning early on and some tiredness at times in my cycle ...I seem to cope with this , maybe it’s my new normal! If you do get any of the side effects , there is always someone on here that can help with advice on how they got through it . Keep busy , keep moving and stay positive x

[JustmeMary]

Thank you Sandra....my oncologist had suggested getting the infusions once a month but I am hesitant. My sister passed away with MBC and I remember her telling me she was left with a hole in her jaw from that treatment. Have you had any issues with the infusion treatments?

[Shelly1009]

Welcome I was diagnosed MBC in Feb of this year. I'm 6 months in to the same treatment as you. I've had few side effects and all quite manageable. Joint pain from the estrogen suppressor (mostly in my feet), my hair thinned a bit, and some general fatigue. I'm still working full time at a busy physical job and taking care of myself and a family. My blood work has remained fairly stable, just a little neutropenic and on the 125mg. Good luck!!! Hope you tolerate it well.

[JustmeMary in reply to Shelly1009]

It’s nice to hear so many women are tolerating their treatments so well. I’m working from home but keep struggling with when or if I should retire. I don’t particularly enjoy my work but just not sure what to do yet. I want to enjoy my life now more than ever instead of rotting at my desk for the next few years.

[Shelly1009 in reply to JustmeMary]

I totally get that. I really enjoy my job and work with a great group of people. I’d probably be inclined into looking at disability if I was doing something I didn’t like. I learned from this forum that MBC automatically qualifies you for it. I’m only 52 so retirement is still a few years away for me.

[LaliChicago]

Hi Mary and welcome!

First, I’m very sorry that your sister passed and am also saddened that you too have been diagnosed with MBC.

I have been on 125 mg of Ibrance, Letrozole and monthly Xgeva shots since being diagnosed in March 2019. By and large, I tolerate the meds fairly well. My biggest complaints are joint pain and itchy skin. As others have said, the side effects are very well worth the benefits.

I took disability and haven’t looked back. Frankly my work was way too stressful and I don’t think I would be tolerating things as well if I had not stopped working.

You can get so much incredible advice here , but please remember that we are all unique.

Peace!