I have a very specific question: is any of you ladies triple positive and over 50, and been diagnosed 5 years ago or more? Would highly appreciate your answers, as well as what meds are you on.
I'm 63, still on chemo (newly diagnosed) and trying to be hopeful 🙂
Hi Ezsz I had recurrence of bc cancer to metastatic breast cancer 5 years ago After a 13 year break , it had spread to the bone and some small lung nodes. I was on hormone treatment until oct 2020
Currently I have started IV chemo treatment , I have just completed my second round of Pacilitaxel, pertuzumab & trastuzumab and once a month denosumab injections.
If you have any questions ask away . I am 57 years old .
Luann
Hello Luane,
Thank you for responding. I have do many questions.
What was your first line of treatment?
Why chemotherapy again after 5 years?
How much freedom do you hVe between treatments? Can you travel?
Is there some kind of normality?
Your story is similar to mine.
I am on first line, just finished 3rd cycle chdmo/H & P treatment. I have 3 more cycles. So far, well tolerated. Maybe I'll be given 2 more cycles if I can handle it.
Then I guess just Herceptin as long as it's effective and tolerable.
Sounds familiar?
Are you on a special diet?
Are you physically active?
Thank you
Dully
My first line of treatment since reoccurrence 5 years ago was 2.5 mg of Letrozole 1 year , then Anastrozole 2 years
then ibrance 125mg and faslodex injections for 2 years . I slowly had decreases in Ibrance from 125 to 100 to 75 due to low neutrophils. I had a substantial progression and have now started the IV a chemo of Pertzumab , Trazumab & paclitaxel every 3 weeks and a repeat on paclitaxel 2nd week with 1 week off .
As for travel with the current pandemic we are not going anywhere. I also can not get medical travel health insurance to travel outside of Canada , being stage 4 metastatic breast cancer is not eligible for insurance in Ontario Canada.
I am not on any special diet ( and should eat healthier) I don’t eat a lot of spicy foods anymore. my stomach does feel better with smaller meals/ snacks more frequently previously I would eat 2 larger meals a day ( didn’t have time for grazing , fill and go ... lol )
Now on my new treatment I feel well enough to work part time for likely 6 hours on my feet a couple days a week and maintain my home and cooking . Up until the last 4-6 weeks , I had been feeling like crap since January 2020 .
I don’t exercise ( but I should ) I have never enjoyed exercise .
I am feeling better physically with less pain then I have in 5 years . But I did semi retire 2 years ago from working my own business 6 to 7 days a week for 25 years ( I was physically, mentally & emotionally exhausted ) so I believe the change in life style has been a positive move.
Generally I am feeling so much better , and looking forward to the pandemic being under control to have more freedom to get out and about and seeing friends & family in person .
Sorry for the long response , anymore questions fire away .
Oh and I am Pr positive, Er positive , Her positive , so triple positive .
Luann
Luann, you said that you are now on IV treatment. Weren't you on IV treatments for the last 5 years?I'm on IV now.
Can you tell me about the side effects?
Thank you so much
Dully
No the last 5 years I have been treated with hormone therapy , since I had progression of cancer the new IV a chemo was introduced .
I love long replies that offer many details. I'm in Ottawa, been here for just over a year (moved from QC. I retired, sold our business, 2016.
I highly recommend reading The Plant Paradox by Dr Gundry. It explains the science of food/ macrobiom, and it may be of an advantage to follow his recommendations.
I am posting a new question that is related: was there a change in blood work after 1,2,3 chemotherapy and H & P treatment. Very interested in the response I shall receive, hopefully.
Thanks, be in touch. If you are close to Ottawa, I'll be happy to meet/talk.
Dully
We are about 7 hours drive away from you . We live near Lake Huron . But that would have been nice .
Beautiful area. Maybe one day 🙂
Opps side effects of IV chemo have been hair thinning, I shaved it but maybe a little too soon ,opps ! My cheeks get rosy for about 2 days
I take an anti nausea pill maybe once a day for 3 days after treatment . And I have insomnia for about 2-3 days after each treatment .
I starting using CBD oil drops about 3 weeks ago , I was taking about 8 extra strength Tylenol throughout the day for pain , I am now taking maybe 2 on day 3 after treatment .
Funny, I too shaved it too soon because I still have hair 🙂I found the cbd oil ineffective, so I bought a vaporizer. Much faster response. No nausea though, but red checks. Very similar.
Any change in blood work?
I’m ER+ Her2+...I was on Herceptin/Perjeta for 4 1/2 years before progression in November. Then I had radiation and switched to Kadcyla. Preliminary numbers have gone down so hopefully scan in March will show shrinkage! There’s a good hand full of lines out there...Don’t worry ...U got this.. 😀❤️😀
Thank you so much for your response. Any side effects from first line?
Not too many side effects... I worked full time. So quality of life was good! And 2 trips to Disney...😀
Sounds like a good deal 😄Happy to hear that. Thank you
Hey, Dully! I am HR+ and HER-2 negative, so I don't have anything to offer on the triple positive front. But, I did want to chime in to say that I "see you." I am newly diagnosed as well (seven months now), and I have found this forum to be an incredible source of information and support. Wish you weren't a new member of the club, but if you (and we) are going to go through this... talking to people who "get it" makes all the difference.
Hang in there!
❤️
I have told you my story in earlier post. I can add that I have two sisters who were diagnosed with BC. One sister, a year older than me, was diagnosed in 1999, age 52, triple positive, followed by chemo and 18 months on tamoxifen. She has not developed MBC. My twin sister was diagnosed with triple negative BC in 2010, at age 61, followed by chemo; she has not developed MBC. STAY HOPEFUL AND DILIGENT!
Linda. 💗💗🙏🏻🙏🏻
Thank Linda. My sister died 30 years ago, her BC spread to her bones.I had good 14-15 years in between. Yes, I'm devastated, have a good life and plans for the future.
My main fear is physical pain, and the side effects of the mefd. Goidbye my good health I worked so hard for.
Will not lie, I'm devastated, but there is no other choice but to adjust.
Thanks again.
Have you been screened for BRAC gene? They are discovering new threads every year that offer the promise of targeted therapy. I am being tested for third time by lab at the University of Washington, along with my two sisters. You may want to ask your oncologist about genetic testing. It’s just a simple blood draw. God bless you!! Hang in there. 💗💗🙏🏻🙏🏻
I have, and so did my sister 35 years ago. Both negative. Should Itest again?
When were you tested? Geneticist here suggested every 4 or 5 years.
2005
I’d for sure get checked! Ask your oncologist about this! 💗💗🙏🏻🙏🏻
Hi, I am not triple positive but I heard that this one of the best forms of MBC to have because the drugs are very effective.
There is a woman on the SHARE hotline who is triple positive and she is now into her 8th year of mets. She is very active in SHARE and wonderful to talk with. Her name is Victoria Goldberg and currently she is on the hotline on Saturdays. You would feel encouraged talking with her.
Definitely, thank you. What's the hot line?
sharecancersupport.org is a good website. Lots of resources. To talk with a volunteer who has MBC call the metastatic hotline 844-275-7427. They are great and you will feel encouraged. They are all encouraging with mets in various places but living their lives.
Hi. What's Dm?
Did you receive my Dm?
Breast surgery for de novo Stage 4
stage 4 breast cancer and hair loss
Mom has stage 4 mbc. looking for hope. 
Living with Stage 4 Breast Cancer that has Metastasized
Mammograms for Stage 4?
