Ibrance - to start or not?

[Jac-genova]

Hi everyone - I'm posting on behalf of my mom, Maria. She was diagnosed with Stage II breast cancer in 2012, had a mastectomy and was put on tamoxifen (no chemo). We found out it came back in September of 2018. She currently has 2 tumors in her bone - t2 and l4 regions (only bone, no organs). She has been taking letrozole. Her recent petscan showed no new progression anywhere, but it did show an increase in cellular activity of her tumors. Her doctor wants her to go on ibrance because of this, but we're both hesitant. We know it's such a strong drug and my mom has been wanting to stay away from chemo. Just wanted to know your thoughts and if any of you have experienced a similar situation. Thank you.

[Hidden]

Hello, Jacrew3 -

I would say without hesitation that she should go on the Ibrance. It basically doubles the average time until progression of whatever other drug it's paired with. And, while some people do experience severe side-effects, many/most of us do just fine.

I've been on it for more than 5 years and the only issues I've had are fatigue (not sure if that's the Ibrance or the other drug I take it with) and low white blood cell counts (which does not affect my life at all).

If your Mom happens to be one of the people who has real side-effects, they can always reduce her dosage or, if that doesn't solve the problem, THEN she can go off it.

I did "real" chemo 10 years ago...for me, there is simply no comparison to Ibrance, which is a walk in the park. I am so grateful that this drug is available as it has extended my life and given me great quality of life for years.

Again, this is my opinion based on my experience...I know a few folks here in the community had a really difficult time with the medication. But there's only one way to find out if your Mom will be one of them...

Best wishes to you both...

Lynn

[Jac-genova in reply to Hidden]

Thank you so much Lynn, I really appreciate your response and will share with my mom. I'm so glad to hear you are doing well. Only reason my mom's doctor is recommending it is because her calcium levels also increased, and she suspects that her tumors might be eating into the bone.

Wanted to share some helpful information that I hope will bless you! It's some research I've done for my blog

wellthoughts.org/an-integra...

wellthoughts.org/the-best-a...

[Hidden in reply to Jac-genova]

Jacrew3! I just love the blog!!! Fantastic!! Really great, thorough information over a wide range of topics/options! Thank you for creating it...

It's particularly timely for me to learn about your blog since I have a renewed interest in learning what I can do to improve my "internal environment" (i.e. my body) in terms of its ability to fight cancer.

I'll recommend that you look at a book written by one of our fellow board members, Anna, aka "BestBird". It is also a great resource - a comprehensive source of up-to-date info and so well written/well organized that it's easy to navigate/comprehensible even to people like me!

Here's a link to the download that Anna generously provides free of charge (also available as a book on Amazon - if you like the download, I'd share that as a review on Amazon):

insidersguidembc.com/

You discuss the importance of vitamin D on your blog, and Anne discusses it in her book...I'm just learning about/absorbing this info! Let me also recommend K2 -- I think Sophie, on this board, brought this to my attention...It's apparently very important, too, in conjunction with the D3, for bone mets...I, for one, feel very hopeful for the role of nutrition and similar in helping manage this disease, and I so appreciate people like you, Anne, and Sophie, who obtain, digest, and disseminate this vitally important information!

Thank you, and my best to you and your Mom!

Lynn

[Jac-genova in reply to Hidden]

Thank you so much Lynn!!!

[Annadm in reply to Hidden]

I totally agree with Lynn on this one. I have the same side effects and I’m also losing hair, eyebrows and eyelashes. But I’ll take it over IV chemo anytime.

Anna

[KMBL_]

I was diagnosed Stage IV de novo right out of the gate. Ibrance and Letrozole are the only two things I’ve ever been on, so I can’t compare it to chemo or other medications. I started on the 125 mg, which is where they start you to see how your body accepts it. My white blood count dropped dramatically, so I went straight to 75 mg. If her doctor is recommending it, it may be worth trying.

[Jac-genova in reply to KMBL_]

Thank you!

[Nmartinez15 in reply to Jac-genova]

I will definitely go to 75mg. Less toxic in your body! My doctor wanted to change to somethings else bc my white cell couny went to 0.69 but I know why. I was taking colostrum previous month and they never went so low but the past month I didn't take this natural pills. So I realized that was the problem so I refused to change to verzenio and i explained him.... so he said to stay one more month and continue take my supplement of colostrum.

[Jac-genova in reply to Nmartinez15]

Thank you so much! Hope you are doing well

[Hidden]

I’ve been on Ibrance and Letrozole for 2 years. After about 5 months we agreed to decrease the 125 mg to 100 mg to help with fatigue. That made a difference. I also try to take an afternoon 20 minute nap 3 times a week to manage fatigue.

So far I’m still active and cycle regularly. Hope this helps. You’re a good daughter

[Jac-genova in reply to Hidden]

Thank you Glad to hear that. Wanted to share the following with you too- hope you can benefit from the information, happy you are doing well

wellthoughts.org/an-integra...

wellthoughts.org/the-best-a...

[SunshineBoss]

I’ve been on Ibrance for a year and haven’t had any major side effects. It should increase her chances for living longer so I would say go for it. Sorry she has to go though this but Ibrance has been a has been a life line for a lot of people. ❤️

[Shelly1009]

I just started my 4th month of ibrance. I had some mild fatigue the first month but there was so much going on then with a new cancer diagnosis and the start of a pandemic. It could have been due to any combination of those things. I'm at the max dose of 125mg and have had almost no side effects. My white blood cell counts have remained stable and I feel better than I have for a long time. I had 20 weeks of chemo with my first diagnosis in 2016. There is no way to compare the two. Best of luck to you & your mama!!

[Jac-genova]

Thank you Sandra! There is a possibility that the increased calcium could be from a thyroid issue, but we're not sure. My fear is that if someone starts ibrance and wants to get off of it, the cancer would become more aggressive because ibrance suppresses your healthy cells & immune system too

[SMPG]

I too was very hesitant about Ibrance. I read about the horrible side effects and was scared. But then I agreed to give it a chance. I started slow, one week on, one off, then two on, one off and then 3 on one off. At 75 mg which is the lowest. And surprise! No side effects to speak of. I am tolerating it quite well. So, I say let her give it a chance and see how it goes.

[Jac-genova in reply to SMPG]

thank you - are you still on it? is ibrance something you are on indefinitey?

[Teddielottie in reply to Jac-genova]

Hi ! Once you start taking Ibrance you are advised to stay on it until it stops working for you , however long that may be .Then the oncologist will change your treatment plan to find something else that works for you . My experience of Ibrance has been a good one , and I have tolerated the side effects and had a good quality of life whilst taking it . I will be starting my 32nd cycle of Ibrance 125mg / Letrozole shortly (2 1/2 years ) and hope to get many more before I have to switch onto something else . I would therefore advise your mum to give it a go , doseage can be reduced if need be . Wish your mum well ...Take care ! x

[SMPG in reply to Jac-genova]

I only started Ibrance in March this year. I hear that you are on it until it stops working or until you give up.

[syl70]

In 2017, I was on Ibrance and Faslodex for 18 months. I did get fatigued some, but I was able to travel, swim, fast walk, bike and do zomba. I was 68 years young. Compared to infusion chemo, which I’m on now, it did well. My husband and I went to Spain and walked from morning to night for 2 1/2 weeks. I miss it so. I wish that your mom does well on it and stay on it for a long time.

[Eliactida1955]

Go on the Ibrance!! Thank god for it

[Annadm in reply to Eliactida1955]

Amen

[Jac-genova in reply to Eliactida1955]

How long can you expect to be taking it? is it indefinitely?

[Annadm]

Hi Sandra! Had your hair thinned out a lot? Not only is mine thinning, I’m actually losing quite a bit sling with my eyelashes and eyebrows. Thanks

Anna

[BlueEyedC]

Hello, Jac-genova,

First of all, thank you for supporting your mother.

I can't tell whether your mother should or shouldn't take iBrance - I can just tell you what my experience has been. I have been on 125 mg of iBrance (first with Femara, then with Faslodex) for 3 1/2 years. The only said effects I have had are weakened immune system (but not too bad and if it gets too low my onc just delays the start of the next cycle), and thinning hair, occasional mouth sores (the last two from ALL of my medications, so it might not be from iBrance). I have been able to live a pretty normal life. I know I'm lucky, and everyone reacts differently, but that's my two cents.

Good luck

[Jac-genova in reply to BlueEyedC]

Thank you! Glad you're doing well! Wanted to share these with you as well - think they could help!

wellthoughts.org/an-integra...

wellthoughts.org/the-best-a...

[Halfpint2]

I’ve been on 100mg Ibrance for 4 years. I’m doing awesome! I’ve had very few side effects.

[Lilykristymichael]

Ibrance is strong but it’s strength is what keeps many of us from progression. I did not want to go

On chemo either, but it has helped me and I am thankful I have had no new progression.

[Jac-genova in reply to Lilykristymichael]

Glad to hear that, how long have you been on it?

[Lilykristymichael]

I have been on Ibrance since June, 2019. Have had to stop for two weeks twice because of low white counts. But they always come back after two weeks off but

Dose was lowered to 100 mg after a year on . My thoughts are with you,

Madlyn