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newly diagnosed with metastatic breast cancer.

BellaMillie profile image
8 Replies

Hi all,

I was diagnosed with metastatic breastcancer a few months ago. Becsuse of my age, 75, the doctors here did not think I needed chemo. I was happy , because I saw my mother go through that and it was really awful.

The cancer is also in my lymphnodes and I just got the news that it has spread to my bones.

I have been on Lesterol for a few months and my oncologist is putting me on Ibrance from tomorrow. I would appreciate it if you can tell me what side effects to expect.

Many thanks!

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BellaMillie
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Red1246 profile image
Red1246

Dear Bella Millie,

I have had no side effects other than low white blood cells. No pain, discomfort or anything else. The low wbcs just mean that I have a different schedule: I’m on Ibrance for 21 days then need 3 weeks vs the usual 1 for my wbcs to come back to normal and I begin a new cycle.

Everyone is different however but I hope you too have little or no side effects. It seems to be a miracle drug in a way and many in this group have been on it for 5+ years and doing relatively well. Wishing you the best. 🥰Kathleen

BellaMillie profile image
BellaMillie in reply to Red1246

Thank you very much Kathleen! Keeping my fingers crossed to do as well as you. Keep well!

Red1246 profile image
Red1246 in reply to BellaMillie

Thank YOU. Please let us know how you get along. KS

neosha profile image
neosha

BellaMillie, it appears we have more in common than Ibrance! i will be 75 this month.

Also , the cancer has metastasized to my bones. Another time, I will you about that.

Where we may diverge is that I am also dealing with a bad back. But enough about that.

The biggest side effect for me is that Ibrance will make you lose your hair. There are various

shampoos, conditioners, and oils that can be purchased. I have not found the ones I have

bought helpful unless delaying complete loss is to be considered a victory. But that should not dissuade you! If you find something that works for you, by the way, I would appreciate

your letting me know. I wear a wig and always wear a fashionable hat! It is my trademark.

People sometimes ask how many hats I have, and I say that I really have not counted them

😊!

When I first got the diagnosis, I went through depression and tears but got over that. Now, I am just living everyday. When it ends it ends. Incidentally, I have been on Ibrance for six years. One thing I have been doing is giving away things that I am not likely to use and deciding I want others to have. On that latter note, I suggest you make a list and give it to someone you trust. I am not speaking of things like real estate or money but

more "personal" items. My mother died two years ago and I was largely responsible for

handling that part of her estate. I do not want to put anyone through that with my things.

No joke, I think I am finally coming to the end! I hope that I have answered your questions and given you some perspective.

Take care, take every day one day at a time, and be grateful for each one you have!!!

Hessie

bikebabe profile image
bikebabe

I have had metastatic cancer in my spine and been on ibrance, Femara, and denosumab (bone strengthing) for 1yr. I haven’t had hair loss as such - it just grows much more slowly. And apart from ongoing low grade back and shoulder pain and low WBC, no major side effects. I can easily walk 6 miles (slowly) and it hasn’t stopped me doing anything. A game changing medication compared to chemo.

BellaMillie profile image
BellaMillie in reply to bikebabe

Great to hear that! I hope you continue to do well!

We cannot get denosumab here ( I live on a small island) but my oncologist is hoping we can order it from overseas, so I can go on that as well. I will be doing my first bloodtest in 2 weeks,after my first cycle, and hope it will be ok...

Do you take any pain medication? And if so which one?

bikebabe profile image
bikebabe in reply to BellaMillie

I haven’t really needed any pain meds. Most things come and go so the odd paracetamol/ibuprofen for shoulder or lower back pain. I am given antibiotics at first sign of any infection- chest, skin etc as docs have a low tolerance threshold due to compromised immunity. Everyone’s different and I consider myself lucky as some do have debilitating side effects and my heart goes out to them. I have several daily core routines - physio exercises, lymphatic drainage, mouthcare, tai chi and walking in peaceful surroundings. I eat what I want and am usually rushing around solving crises often not of my own making so my goal is to find a better balance between being busy busy (ie life as normal and ignoring the cancer) and rest/ walk & contemplation to recharge. I’m generally optimistic despite the stage 4 and can accommodate the occasional crappy day/week(s) as bad things usually pass over if I manage them, distract myself, and don’t dwell. Hoping for many more years of active living and subscribe to ‘Life beyond Breast cancer’. Hope I haven’t bored you with a long response.

BellaMillie profile image
BellaMillie in reply to bikebabe

You did not bore me at all , it was interesting to read how much you still do!

I also am a very positive person by nature and my friends are amazed how well I am coping with that horrible news, stage 4 mastecised breast cancer plus now in my bones... But I have a lot to be thankful for and love life!

It also gives me hope when I read your story , for a few more years of quality life., which I am now determined to live to the fullest!

Wish you lots more years of good living! With thanks, Monique

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