Need encouraging stories please

[Gibby21]

First time posting. I’m on Ibrance 125 mg and Fulvestrant 500mg, just started in may. I have Mets to liver I need some encouraging stories, I’m only 58 and I really need as many years as possible but I’m feeling scared and defeated already! I had breast cancer 12 years ago and never thought I’d be doing this again now!

[MadameKa]

Hello Gibby21, I am a year older than you. I first had cancer in 2003. When it came back in 2018 -- to my lungs and bones -- it was so long after the original that I didn't even think it possible for cancer to recur so late. You'd have assumed that I'd be tested from time to time... I was upset and I felt let down by life, and by the medical profession. I also thought I'd be dead within a year: just the word metastatic meant that in my head. I have been on Ibrance and Letrozole for over three years now and everything is stable. 99 % of the time I forget I have cancer. That 1% -- particularly first thing in the morning, the thought that I will never not have cancer again -- is still hard, I won't lie. But I understand it much better, and I am not scared of it any more. I wish you many years, and I hope both our blighters are lazy as they seem to be if they have taken so long to come back

[queeneee]

Hello Gibby21, I am the same age as you and have a very similar history - I was diagnosed stage 4 in Feb 2020. I am on Capecitebane as I could not tolerate fulvestrant.. I have decided to enjoy every moment of my life, whatever is left.. I smell the flowers and marvel at the sunshine and cycle my bike. I do worry sometimes.. but fear does not help me make decisions or adjust my outcomes. Take a deep breath and keep moving forward - you are not dead yet!. Love. x

[rnbobcat]

I was diagnosed 6 yrs ago with metastatic breast cancer right from the start. had a bilateral mastectomy and cyber knife to two spots on my bone placed on ibrance and letrozole and thank the Lord no evidence of disease since.

[jersey-jazz]

I am sorry that you had a reason to join us but assure you that we on this forum are all in similar boats and we all help each other paddle. My you be around for many many, many, more years!

[Jeremiah2911]

Hi Gibby,As much as we hate to see you here, you’ve come to the BEST place for support! Fear is part of this journey but don’t give up. And my advice is be VERY selective of what you choose to read online or research…it can be very depressing and create more fear. If you have a question, ask on here because odds are someone has already researched it. I was originally diagnosed in 2008 and almost made it 10yrs before the cancer cells got bored & decided to take up residence in my left lung. I’ve been on 100mg Ibrance and Fulvestrant since Nov. 2018 with my most recent scan showing NED. I celebrated and keep moving forward. The tough part of MBC is knowing it’s truly always there and will probably show it’s ugly head again. I’m 53 with a 9yr old daughter so I understand your heart’s desire to be here as long as possible. Important to have a few close people that you can share this journey with them without much explanation…you need that! Prayers for you 🙏🏻❤️

Alicia

[Gibby21 in reply to Jeremiah2911]

Thank you for those kind words. I have learned the hard way to stay off internet, and only read what can cause hope. I just read on the Internet that people with mets in their liver really have less of a chance of survival 2 to 3 years and that’s what I read to set me off so I’m just gonna wipe that from my mind, remind myself that I’m young and actually was healthy so I’m going to hold on that and hope that I’m part of the 23% that has five year or more survival rate and then I’m gonna stop reading things on the Internet. Thanks to everyone who replied.

[Karen2235]

You really have found the right place to share your ups and downs. I was diagnosed with MBC in March. I was so convinced that I had beaten the cancer the first time around in 2017 that it was a real shock. But I have started treatment with Fulvestrant and kisqali and am hoping for the best. I am trying to reframe the cancer as a chronic disease rather than a terminal illness. I am aware that it is not going to go away but I can live with it and still have a good quality of life. And get strength from the knowledge that I am not alone and there are all these other wonderful women sharing our journey.

[kduck in reply to Karen2235]

What are your side effects on Kisqali? What dose are you taking?

[Karen2235 in reply to kduck]

The main side effects fluctuate a bit. Tiredness mainly and loose bowel movements but not diarrhoea and lower back pain but I have other health issues (spinal cord injury and scoliosis) so I am sometimes not sure what problem goes with what side effects .... including ageing. I am 65 and not as mobile as I used to be. I am on 600 mg of Kisqali daily on a 3 week on/1 week off cycle.

[Hidden]

Hi Gibby21! I'm Marjorie and I had breast cancer in 2015. 2 years later, MBC to the bone, my femur. Surgeries, etc-have had it all. Have Faslodex injections every 28 days & Ibrance every day. Have so many side effects & ongoing problems! Guess what.......34 months later I am still ALIVE and honestly, probably doing better than a lot of people without cancer! Considering all, think it could be worse? Yes, it could! But it's not!!! Just think if one thing a day that you are thankful for. I'm thankful for waking up every day. And being able to get out of bed on my own!!!! BTW, I'll be 71 yo in August. Smile. Then laugh at me being so flipping old!🤣😂🤣

[Gibby21 in reply to Hidden]

Thank you for encouragement 🥰

[Hidden in reply to Gibby21]

Gibby, guess what???? We are still alive!!!!!🙏👏👍❤🤣🤣🤣 Smile...another day!

[Nunky]

Hi Gibby - thanks for your post and positivity in the face of all the fear. Fingers crossed treatment does the trick and absolutely stay off dr google!! I am 47 and was diagnosed initially 2014 and 2019 but then in March 2020 Twas back with a vengeance and boobs off, ovaries out and taking ibrance , letrozole and xgeva. My hitchiker is all through my skeleton (my nursey mates joked initially that I was just ‘riddled’!!) but 15 months on and I’m tolerating the drugs and things are

No worse. Last scan showed my hitchiker as I think of it - was busy busy plugging the mainly lytic lesions with sclerotic ones - so I’m quite proud of the little bastard really!!

Take heart - liver can regenerate - and I do hope you’re not suffering too much. All my love xx

[Gibby21 in reply to Nunky]

Thank you I’m trying to stay positive, went back to work that helps keep my mind off things… I’m staying off all internet in regards to this cancer.., you stay well and don’t pick up any more hitchhikers!! 😊❤️

[PJBinMI]

I'm so sorry that you need to be here, but glad you found this site! You have some things going for you! The length of time between your initial bc and now having mets does suggest that the cancer cells are not particularly aggressive, and that's always a positive! Your age is a plus, too. Something to keep in mind about the liver is that it is the only organ in the human body that can regenerate itself! I have heard of women being really sick with liver mets, in the hospital expecting to die, getting a new treatment and bouncing back to go on and live for years, not months. I was diagnosed with bone mets from the get go, the month of my 58th birthday. I'm 75 now. 17 + years with mbc and in treatment all the time. You would never guess that I have advanced cancer if you saw me out and about. (Or that I'm 75! which I love, lol!) One of the ways I have coped is learning as much as I can about bc and mbc. I've attended several big conferences and read alot. I have a theory that those of us who find on line sites like this one tend to do better than the averages. We have to feel well enough and be curious enough to look for info and others with mbc. We have access to the internet and know how to use it. The folks that bring the averages down are sicker to begin with, and may have fewer resources and may not be able to get the treatment they need. One thing that gave me hope when I was new and really looking for hope, was hearing about several women who had lived for 20 years and more with this lousy cancer. At one of the first conferences I attended (Metastatic BC Network), there was a 30 year living with mbc woman there! Amazing! Fulvestrant worked for me for over 9 years! When I started on it, 250 mg was the amount given, one injection. When I started getting the second shot, my CA 27-29 dipped into the normal level, the only time it's been "normal" in my years of treatment. I've known several women (face to face) who have gotten over 5 years from it. I hope you will do well for years and become one of the woman who give hope to the newbies! Alot of us do, more nd more all the time!

[Gibby21 in reply to PJBinMI]

I definitely hope those cancer cells are lazy since it’s been so many years in between thanks for those words of encouragement., I need to hear all those good stories makes me feel better. ❤️

[PJBinMI in reply to Gibby21]

I sure understand that! This diagnosis scares most of us! But it can get easier, esp if we have a good response to treatment.