New to this group - not new to MBC - SHARE Metastatic ...

SHARE Metastatic Breast Cancer
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New to this group - not new to MBC

Aquadog
Aquadog

Good morning everyone! I was diagnosed with Stage III BC May 2008 and MBC Dec 2016. Currently on Ibrance, letrozole, and Xgeva. Have all the usual suspects for side effects, but doing okay - still mobile, still engaged.

Hope you all are staying safe in these crazy times and I look forward to getting to know you.

Aquadog

26 Replies
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Hi Susan,

Welcome on board! It sounds like you are doing well on your treatment. I hope you remain stable and continue to see good results.

Take care,

Sophie

Hello and welcome on here ! I too am on Ibrance / Letrozole (for bone mets) and have been on this protocol from December 2017 . Have you been on this protocol since your mets diagnosis ? You sound to be doing well and I hope it continues for you . You will find this site very helpful and the ladies on here very supportive . Take care ! x

Aquadog
Aquadog in reply to Teddielottie

Yes, I'm still on my first line of treatment. My markers have been slowly creeping up, though, and that may change. Have a PET scheduled in a couple weeks which will tell the rest of the story. Fingers crossed it's just an infection or something else affecting the tumor markers.

Teddielottie
Teddielottie in reply to Aquadog

Good luck with the scan ...the markers are not always a reliable indicator . Mine have never changed... I may have marker negative disease .

You will get lots of advice and support on here , whatever the outcome . Take care ! x

Red71
Red71 in reply to Aquadog

I’m about in the same place as you are. My markers have been going up the last 6 months but my scans haven’t changed. My next scan is in about 6 weeks so I have my fingers crossed also. Guess I’d rather have the side effects that I am dealing with than break in my body to some new ones! I’ll be crossing my fingers for you too. Welcome!

I would say welcome to the group but it’s not exactly a group you want to belong to. These people are amazing with their support and encouragement. There are times they were the only ones that understood what I was feeling. I hope your side effects are limited and you continue to be able to function. -Sarah

Welcome to the board. I'm sorry you have a need to join us but it sounds as if you are doing well. I've been on Ibrance and Letrozole for just over 2 years now....last scans indicate that probably my time on that regime is over but I have chosen to ride it out over the summer and make a decision then. Looking forward to getting to know you as well and I hope you find the board as supportive as I do. This is a wonderful group. Take care.

Sandra

Aquadog
Aquadog in reply to girlsptz

Sandra, sorry to hear your scans weren't great. I love that you chose your own direction and are self-advocating. I've got a PET coming up which, for the first time, might reveal progression (markers inching up, discomfort in original tumor location on sternum). But, we'll see. I'm not fretting about it too much. That's just a possibility to be dealt with later. There's plenty of reality to fret about for now. Take care and stay safe in this crazy world of ours. - Susan

girlsptz
girlsptz in reply to Aquadog

Susan thank you. I'm a long time nurse and very in tune in all my scans, tumor markers and the entire picture overall and have known my oncologist professionally before I got this diagnosis. I have always been firm that it is my life so my decisions. We have a fabulous relationship and I trust her I guess with my life. Living in Canada I don't have access to all the latest and recently released treatments so I need to ride each treatment out as long as I can before moving to the next which will likely be chemotherapy.

I wish you the very best with your next scan. We've got this girl. I plan on fighting this beast and not making it's job easy at all. Take care.

Sandra

Hi Aquadog—- I was diagnosed mbc in January and I’m starting my sixth cycle of Ibrance/Aromasin. I like your description of “the usual suspects” for symptoms... yes, me too. This is a great group of women and lots of great info. It is nice to have a group who understand..... welcome!

Welcome to the group. You will find this group to be very informed and supportive. I don’t post a lot but I have learned alot. I am also on Ibrance, letrozole and xgeva since being diagnosed de novo MBC in December 2018. I am also doing well and have some side effects. Overall I am staying fairly active walking, doing yoga and far too much pandemic baking. For the next week and half we are at my friends cottage along a beach with with a relaxing waterfront view and amazing sunsets. So nice to have a change of scenery after months of not leaving the house.

Look forward to chatting again sometime. Take care and I hope you continue to do okay.

Aquadog
Aquadog in reply to Valisa

I'm so envious! The cottage sounds wonderful. Water views and sunsets...heavenly! I've restarted yoga (ugh - where did my flexibility go??) and I'm also learning tai chi. I do like to stay active and learning new things makes it interesting. Wish I could go to a class, but that's for the future.

Have a wonderful vacation.

Take care, Susan

Valisa
Valisa in reply to Aquadog

Let me know how the tai chi goes, I was thinking of signing up for an online class. I have only just started yoga during the pandemic a few times a week via an online class. I like the online classes and being in the privacy of my own home. Maybe by the time we can go out to classes I will have mastered some of the poses so I don’t look too silly. 😜

Welcome Aquadog!

Good to hear you’re doing well on your current treatment!

Blessings!

Welcome to the group! Best group of MBC ladies you’ll find. Glad to hear you are doing well on your current treatment!

❤️🙏❤️

Welcome!! You have just found a lot of new friends. We are here for you. I am on the Ibrance/Letrozole combo, but for lung mets rather than bone mets. Hope to see back soon. Blessings, Hannah

Aquadog
Aquadog in reply to hdhonda

Hi Hannah! Hope you're doing well on Ibrance/Letrozole. I'm looking forward to being involved on this site. It was recommended to me by another cancer survivor who said there's less drama here than in the Facebook groups. I beleive there's a place for both, but sometimes I just need someone to listen and understand.

Stay safe and take care

Susan

Welcome to a wonderful group of amazing women!!!!

Welcome to the group. It is an amazing group of ladies with a lot of information. I have also have bone mets since May 2019 and am taking ibrance and letrozole and zometa.

Theresa

Hello!

Welcome to a very supportive, encouraging, and inspirational group of women! You will not be disappointed!

👍👍💗💗

Linda

Welcome! I received a de novo Stage IV MBC diagnosis in Feb 2019 and have been on the same regimen (Ibrance, letrozole , Xgeva). This group is a good resource for learning about so many aspects of this journey. I hope you too find it useful too!

welcome to the group. I just switch from the Ibrance Letrozole protocol after five years. Good luck, stay strong. ( i moved to falsodex)

Aquadog
Aquadog in reply to Meadesmith

Wow - five years! That's fantastic. Hope you get at least another five out of falsodex. It's been suggested to me that I'll be on falsodex when I have progression. Good luck and let us know how you do on it.

I am exactly on the same meds as you. Not much in side effects so I am lucky. Wishing everybody to have good results with their meds.

Welcome to this group. I don't post much but read everything and find it so helpful. I am on Ibrance and Anastrozole since June of 2019. Had a mastectomy and reconstruction in 1989 and was seen every year by the lady dr who discovered my very small lesion. Had mammograms faithfully for 30 years and was told I would never have a reoccurance on surgery side. I noticed a soft swelling two years ago but thought it was fat that had repositioned from reconstruction. Then in June 2019 had severe pain in chest area and a very thorough ER Doctor found I had large tumor on sternum and mets to ribs, possibly lungs and liver. I also had been seen by three regular drs for a chronic cough and hoarseness. They all found nothing. Shocked is mild for what I felt. When I contacted original dr for previous records she had gone out of business and fined for incompetence. She was in her 80's and had been a wonderful dr for many years. I know now I should have sought out a dr with the latest equipment and education. Thankful to be treated at the Univ of Michigan and know I am now in good hands. I was recently taken off 125 mg Ibrance and started 100 mg two months ago because of low blood counts. My cough went away soon after I started initial treatment. I just pray my meds don't do too much damage to my body and try to live each day doing what I please. We are retired so I don't have to worry about work. I am very thankful for these meds that keep us alive. This was not possible in the past. I feel like I am in God's hands and try to eat healthfully, exercise and trust in God. I feel fatigued a great deal but enjoy sitting on my couch, watching the birds at my feeder and gazing out at the trees and little lake we live on. Oh my, this post is too long. I hope I have not bored anyone. My best to all the wonderful ladies who share their struggles and triumphs here.

--Madlyn

My gosh, Madlyn, what a story - 30 years then progression! Not boring!! So glad you landed in a competent ER doctor's hands and are under good care now. I went through something similar. Eight years after having two lumpectomies, chemo, and radiation for Stage 3 BC, I had pain in the sternum and right shoulder. My primary care doctor diagnosed costochondritis and arthritis and said it would go away. It didn't. After six months (!) she ordered an xray - my phone was ringing when I walked in the door at home and she said I needed to call my oncologist. I feel like so many doctors are not aware of MBC. They ask our history, but don't really think about it when making a diagnosis of symptoms other than lumps in the breast. We also need to educate the people who have had early BC about the possibility of return. They don't want to hear it, but it's necessary and could extend their lives.

I, too, am retired (I'm 64 - husband still working) but my 90-year-old mom and 25-year-old son live with us, so there's still a lot to do on a daily basis. Sitting and watching the birds sounds wonderful to me!

Take care and be safe

Susan

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