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New to MBC and SHARE

MegandOllie
MegandOllie

Hello everyone, I was just diagnosed with MBC in May after breaking my collarbone in my sleep. Original breast cancer was in 2011. I am on Ibrance and Fulvestrant and am SO very overwhelmed and tired! Oh, and terrified. I’m looking to find help, hope and friendships in this space. Very new to sharing this side of me. Thank you all.

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Hello, dearest Meg!

You will find MANY kind and kindred spirits on this website. I have found much strength and encouragement from the words of so many beautiful women here, all sharing their ups and downs.

You don't mention where your mets are located, but if you are like me (whose BC lay in repose for 17 years) they may be in your bones. My oncologist referred to mine as a "shy" cancer that lies in wait for years before it strikes again, often metastasizing in bones. She told me that I would likely die in a car accident (!) before I would die from MBC--not that the MBC would be gone, only that the prognosis when a long period has lapsed between diagnoses, is often more positive.

After nearly three years on Ibrance and Letrozole, my fatigue is much less overwhelming. You do learn to pace yourself with breaks and naps; and may regret the lack of energy at certain times during your cycle, but I have found this side effect much less debilitating as time marched on.

God bless you and all "sisters" with MBC! You are among wonderful friends here!

Love to you, Linda

XXOO

Hello ! I just want to welcome you on here and hopefully give you some hope and support . I am just 3 years older and also quite a private person ... I have shared my diagnosis only with my siblings/ in -laws , and have even kept it from my mum ( who is in her mid eighties) . But I find this site has helped me a great deal , and the lovely ladies on here who are the ones who really understand what we are going through. You will get lots of good advice and support on here !

I have been on Ibrance/Letrozole for over 2 1/2 years and my bone mets are stable . I did find the first four months particularly difficult , but then I got into a routine , and now it’s my new ‘normal ‘ and I have tolerated it well. I would advise plenty of rest in those first few months , but do keep moving , (any exercise does actually help with the fatigue you can get with Ibrance ), and lots of water at all times ! Try eating lots of small ‘healthier’ snacks for energy (eg., nuts, fruit, peanut butter , avocado etc., ) and some ladies do daily ‘juicing ‘.

I know that it is overwhelming when you are first diagnosed mbc , but just hang in there , as it will become easier in the coming months . And do ask anything on here , as there’s always someone who has had the same experience. Take care ! x

Hello Meg! If your gorgeous dog's name is Ollie--hello there, Ollie. You take good care of your human because she's going to need all your love and slobbery kisses and support. And you will find so much much support and love and kindness (even though this is a tough journey). Meg, may you always know hope, breathe peace, and listen with love to your amazing body.

I was diagnosed with mets almost two year ago. Just stopped Ibrance and have started Faslodex. Seeing an integrative oncologist next week. Grateful for every day and for this community of which you are now a part.

Hi MegandOllie

Sorry you had to join us but you have come to the right place. The women here know what you are going through. With the wonderful support you will find here the months ahead will get easier. Like you I was 53 with three daughters when I was diagnosed in November 2018. It was an impossible time, I was terrified too and I didn’t know what to expect. With the medication you are on you can allow yourself to be hopeful for the future. I can honestly say I am enjoying my life and am living well (Ibrance & Letrozole). None of us knows what the future holds but we do have one. It may give you hope to know once things settled down with hospital visits etc I was able to travel which is something I have always enjoyed. My first trip was to California to visit my middle daughter for her 21st birthday while she was studying abroad for a year and the second trip was earlier this year to New Zealand. You can’t get further from the UK than that! They were both amazing trips. When I was first diagnosed I could not have imagined going anywhere (other than the hospital) let alone to the other side of the world.

You will find your way back to a new normal.

Take care.

Hi Meg,

Welcome to this site! You have come to the right place for support and encouragement. I hope that you will reach out and feel comforted when you are feeling low or have questions. There are many ladies on here on the same treatment as you who will be able to answer your questions about the medications you are taking.

Your dog looks very sweet and loving! I hope he is a source of comfort to you.

Take care,

Sophie 💐

A warm welcome to the group💐

Welcome Meg and Ollie,

This is a great group of ladies that are now your new friends. I am in my 40th month of Ibrance/Letrozole. It is overwhelming, but you adjust to your new normal. Energy levels are not normal although I am older than most at 74. So age may factor in. Best wishes and blessings, Hannah

Hi there and welcome!

Mine came back after 24 years...found out because my spine fractured...the whole experience was terrifying and still is if I’m honest...I don’t cope with stuff very well ....but here I am two years on and on my third treatment

I love animals too have cats horses and a rabbit...they are such therapy... one of my cats knows when I’m miserable and just quietly lies down on me and purrs

All the best

Barb xx

Hi meg

I am also recently diagnosed with mets but only 5 years after primary diagnosis. I started chemo in may with herceptin and perjeta infusions also, 2 more chemo to go and I am waiting for an appointment for my first scan since this diagnosis, also terrified and feel very overwhelmed when thinking about any sort of future.

Anyway, like myself I hope you find this board helpful.

Jpl5036608
Jpl5036608 in reply to cazlav

My daughter is 40 diagnosed de novo with her2 positive and lesions in liver albeit small. Was nursing her baby at the time. Had 6 tchp and now on H&P every three weeks or until it stops working. Tumor markers went from 322 to 0.5! Still some tiny lesions like subcentimeter in liver but nothing growing. Lymph nodes now normal. Breast mass smashed but hard to tell if there is cancer still in it or just fiber. I think H&P are miracles. You will do great too I am sure! Keep us posted on your scan!

What is H&P?

Herceptin and perjeta

Hi Meg! My initial stage 2 was in 2006. Metastasis 12 years later in jan 2018. Mets to bone. Am on second line treatment - currently on ibrance - faslo and zometa. Overall doing ok ! It was extremely hard to digest the first year ... but gets better with time. Blessings and strength 🙏🏻

Hi MegandOllie: Welcome to the group! None of us are here by choice but very fortunate to be part of a wonderful group of supportive women from all over the world. We all have similar but unique journeys, experiences & responses to various treatments. Feel free to share, care, vent & ask questions. Many are here who are very experienced & supportive. Praying for you. ❤️🙏❤️

Best wishes to you and your pup. May you be a long-term member of this group.

Welcome to you! Love the picture of your dog. I have two dogs, and gain so much emotional support from being with them. I was diagnosed with MBC just two months after my initial stage 2 diagnosis. I have been on Ibrance/Letrozole for just over two years, and am doing well. I generally feel less fatigue now than I did when I first started treatment. Most days, I am so busy, that I barely even think about breast cancer--although of course it is always there in the background. May you find peace and joy, one day at a time.

Welcome but I'm so sorry you're joining us. I was diagnosed MBC (initial dx in 2016) this February right before our lovely pandemic showed up. Quite a one-two punch in the face. The first few months are quite overwhelming. I cried buckets of tears, thought about it 24/7, I was a mess. But as the days went on the load started to lighten a bit. And when I found this board and read success stories about women living well, and long, with MBC it gave me the hope I needed to start living again. Hang in there ❤️

Welcome! We all feel your fear and the feeling of being overwhelmed! That's why this site is a Godsend. We get it and try to help through this rollercoaster ride. Keep posting.

The brave women here are wonderful!

Welcome to the group that nobody wants to be in. It is a great place to ask questions and get honest answers. These people have been amazing support to me over the past 2 1/2 years. I find it easier to share here then with my family and friends. The diagnosis is such a shock and then the treatments and side effects start and overwhelm us both physically and mentally. I found I was always so tired on Ibrance and Letrozole while others didn’t have an issue. We are all different. Reach out when ever you have a question. ❤️ Sarah

Herceptin and perjeta!

I am so sorry to hear the cancer has reared it's ugly head again. I hope/pray there will be the perfect drug(s) to stop this invasion in it's tracks. Gob bless you. Be strong Sister/warrior. I am praying for you. I am so happy you have your dog to give you unconditional love/comfort.

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