I am a 54 year old, mother of two children and grand mum to one beautiful baby boy.
I live in Ontario and will return to full time work in the next couple of months. I work in Volunteer Services at a regional hospital.
I was diagnosed with ER+ HERS- MBC in June 2021 with no symptoms, no previous cancer, and no family history.
It’s origin is a 1cm lump in my breast,then 3 lymph nodes, a couple of spots on a rib and spine and a number of liver lesions.
In December, I finished eight FEC chemo treatments with very few side effects and in January I started letrozole and ribociclib, and had a zelodronic acid infusion.
So far the scans show no new disease and a shrinking of the original tumours.
My goal is to get a NED scan someday, and to live a long life. ♥️ And I’d love to meet other people through this forum who are already there.
Kim
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Mumberly
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Welcome. This is a great board. You deserve to enjoy life and your beautiful grandchild.
I’ve had MBC since 7/18. I take Ibrance and Anastrozole.
Fingers crossed for you. Keeping it under control is my goal. I cycle, swim, travel, enjoy family and friends, and embrace life for as long as possible.
Glad I can help. I received great support when I was first on this board. I remain grateful for the ongoing support.
Yes, we need to make changes to help both our physical and mental health. I see a counselor occasionally so I can vent about things it might be hard for my family to hear. I also take an anti anxiety medicine when it spikes. It’s a broad approach I use.
Please don’t hesitate to ask us questions about coping tools.
Welcome! Sorry you have to be here. The good news is there are many, many treatments for us that did not exist previously. I’m at 7 years now. You have much to live for and hopefully your treatments will provide you with a good quality of life for years to come.
Welcome to a fellow Canadian. Wow, you had both a wonderful happening (your grandchild) and a horrible surprise (your diagnosis) last year! Thanks for sharing the details and charming photo.
I also am taking letrozole and ribociclib, but not Zometa (two years of tamoxifen, and sclerotic bone mets mean my bone density is currently at the highest level). After 3 months of 400 mg Kisqali, my liver mets grew larger, so my oncologist and I decided today I should try a couple of months on 600 mg. I hope that'll help shrink mets before I have to graduate to something stronger. Congratulations on your positive scans! I assume since you already have done chemotherapy that your breast cancer is triple positive??
I live in Saskatchewan which I'm very pleased to say now has an online medical record portal (Mysaskhealthrecord) where I can access my recent lab and medical imagining reports. These reports usually appear within three hours after I've done bloodwork or a scan. I'm very appreciative of this service, and assume other provincial health boards may soon offer something similar. I'd be interested to know whether Ontario is providing this now. I spent the first 40 years of my life there, and have a doctorate from Queen's.
My cancer is ER positive and HERS negative. Is it not typical to have chemo with this type of MBC?
We have a portal we can buy into, to get our test and scan results. I didn’t figure I could read the scans properly so I haven’t signed up for it. But maybe they post the written summary report there too?
My bloodwork is the same day as my oncologist appointment anyway, and my two scans have been within a week of my oncologist appointment, and it can take that many days to get it reviewed by a radiologist.
I have a special place in my heart for Saskatchewan 💚 as my dad was from Melville. And Queens, as I work at the teaching hospital that’s linked to Queens.
I hope the increase to 600mg kisqali does the trick for you.
You've probably already read other replies you received so know that most of us with ER+ HER2- disease (and diagnosed within the last three or four years) were not started on chemotherapy as that is held in reserve for use after all versions of endocrine therapy quit working. However, most of us also had early breast cancer which still is being treated in many places with chemotherapy as a possible prevention against MBC.
Since your MBC was de novo, your oncologist may have thought it wise to try and limit its spread through chemotherapy. I'm glad you experienced few side effects to it as I worry about the consequences of all our cancer treatments on our general health. You'll read the expression "quality of living" on this forum as deterioration of this can be the trade-off for treatment attempts.
Only the summary medical imagining reports (not the actual images) from the radiologists are posted on the Saskatchewan portal along with the lab test results, clinical visits history, prescription history, Covid-19 vaccination certificate, and immunization history. I like how quickly all this information is posted, except CA 15-3 tumour markers which take a week. It is a "free" service provided through our tax dollars, and I hope it will eventually be available in all the provinces.
Melville is a charming town of fewer than 5000 people southeast of Saskatoon. If you ever visit it, and want to see the rest of Saskatchewan, take the Yellowhead not the TransCanada, the reason everyone thinks Saskatchewan is flat although 90% of it is not.
Hi KimWelcome and what a lovely photo. You will get so much support from members on this board, I know I have in the year since diagnosis. I am 58 have 3 children ages 19 to 33 and a beautiful grandson age 2 who brightens up the days.
I’m working in Charity work in the Uk, I’m a professional fundraiser and love my job.
Had Breast cancer since 2012 on and off and diagnosed MBC Oct 2020. Doing ok , I think, on Ibrance and Faslodex, scan results next week. Fingers xd.
Have a lovely day. I’m in the North of Uk. I’ve visited the Niagara area quite a few times, beautiful part of the world, bet it’s cold right now.
I am north east of Niagara, near Kingston. Today it’s 2C but we’ve had mostly cold-cold days so far. I’m ok with it, but I’m looking forward to the Spring, as I’m sure everyone is.
Good luck with your scan next week. I know the nervous anticipation that comes with that.
Welcome to this group fellow Ontario. It is the most supportive group I have come across. I was diagnosed originally in 2002 and with mbc in May 2019. Wonderful ladies on here and there is always someone that has the same thing that we are dealing with.Theresa
Welcome to the site. I wish you all the best with your treatments and hope you achieve your goal of reaching NED. You seem like a positive and determined woman.
Im also diagnosed in the same time frame, circumstances and Cancer type as you…although I only have bone mets. I started with Kisqali (Ribociclib) but was switched to Ibrance after 3 months, together with letrozole.
I had some issues with liver enzymes. From the onset when I started Kisqali they were slightly elevated, but the Doctor hoped they would balance out. By the third course my enzymes were 10x above normal.Rather than try a reduced dose or an extended break period at the end of each course, my Doctor preferred to switch to an alternative targeted treatment ( Ibrance ). She thinks I must of been sensitive to Kisqali in particular.
I never had scans done during my initial 3 months of treatment, but the oncologist was happy with the blood work results (apart from the raised liver enzymes). During this period my tumour marker numbers continued to drop and physical exams showed the original breast mass was softening and reducing.
I took a break from all meds, even the hormone blockers, to get my liver enzymes back down.
I lost 20 kilos by dieting and exercising, and I also began drinking lots of water to help to flush out my system (as advised by my oncologist).
After about 5weeks off meds and now almost at the end of my 3rd course of Ibrance my enzymes have remanded down.
Scan results From the CT I had a few weeks ago show a 40% reduction in the original mass. I haven’t spoken to my oncologist yet to discuss the results, I’m due to see her in a few weeks just before I start the next cycle.
I feel well in general, I just get a little foggy towards the end of the course of Ibrance, but I just plan a head so I can take it slightly easier during that time. During the off week my energy picks up and I regain clarity.
I hope everything works well for you with your treatments. I really recommend drinking water as it’s really helped me in my experience. I drink around 3 litres a day.
I’ve always been a big water drinker so that’s been an easy one for me. I wasn’t much into fruits and vegetables or exercise, so those are my main lifestyle changes. That, and cutting my alcohol intake down to next to nothing 😩. I do enjoy a good shot of whiskey haha.
Other than hair loss, my main side effect so far, is with my white blood counts being too low so that’s where I’m at with trying to figure out the kisqali levels. I’m starting at 600mg and seeing where that takes me.
Hi Kim! I was also diagnosed de novo. (July 2020. Also have no family history.) I have the same HR/HER2 status, and my mets are bone-only. Our meds are different, except for Letrozole. From what I understand with my own situation, NED or NEAD is not really expected in my case. But I am doing extremely well on my treatment, including having side effects that are rarely worth mentioning (most of the time) and generally feeling GREAT. My first oncologist started me on chemo despite my MBC diagnosis, so I know something about chemo (even though I should have NEVER started there). Oh, and, my first 1.5 years was with a provider I didn't trust. (I just moved my care to Johns Hopkins this past November.) So, I am not only moving into the MBC advocacy space, but... my greatest advice is to learn everything you can... and question EVERYTHING (when it comes to your medical team).
Here for you! And, if you ever want to chat privately, let me know. In the meantime, finding this forum made ALL the difference for me. Great people, and a LOT of terrific information. Sorry you needed to find us... but I am glad you did. Before I got "here" (this site), I thought I was going to die within two years or so. No more. Finally learned "what's what."
Hello, what a beautiful photo. I am 55 with 2 sons, 3 grandchildren and would like to stay healthy as long as possible for them. I had Er+pr+her2- 2013 then MBC diagnosed 2016. 》FEC-d chemo, zoledronic acid infusions, some radio, anastrozole, now palbociclib and faslodex. Its mostly in bones now, nodes looking good. I hope you have lots of fun with your family, I really enjoy my kids and grandkids and hanging out with my partner. I have cut down to 3 days work per week 😊
Hi Mumberly, Welcome to a very helpful support group. Sorry you have to be here. Thank you for sharing your beautiful and precious photo. Best wishes with your treatments. Take care.
Welcome on here and what a lovely pic! I am 58 and diagnosed de novo in late 2017 , but thankfully my 2 meds (ibrance and Letrozole , from Dec 2017) have kept me ‘stable’ for over 3 years now . I asked my oncologist about NED , she only uses the word ‘stable’ with stage 4 breast cancer patients. NED (no evidence of disease ) would suggest there are no cancer cells at all , which is unlikely at present . NEAD(no evidence of active disease) is therefore probably more accurate as there could still be cancer cells hiding somewhere . I have been ‘stable’ since my first scan after treatment started (2018) and fortunate not to have pain (my mets were bone ) .I have tolerated the side effects and would be glad to stay on this treatment as long as possible. I hope you continue to get good results too ! x 🤞
Ohhhh my, I love your picture with your cutey pie grand child with the deer ears.😇 I had those same deer ears I wore every year during the Christmas holidays. Sadly I lost them during 2021 (2 ) weeks before Christmas🤨 I looked for hours trying to find them to no avail. I was misdiagnosed, and then a year later correctly diagnosed with Triple negative MBC, 10 of 12 lymph nodes were affected by cancer. I am coming up on 14 years NED after being told I would not live to see 2008. The last treatment I had was in the end of 2006, early 2007. I am grateful DR GOD had the last word.😀
This site is great, I don’t feel so isolated. Like you I am DeNovo diagnosed January 2022. I’m 61, with no family history. I am ER/PR+ HER- Lobular with bone Mets and 4 lymph nodes.
I’m hoping to get NEAD as well on Ibrance and Letrozole. My kids are grown . I have 4 grandkids and an amazing husband. I find the women on this site help us cope and we learn from each other. We all need to support each other as it’s different when you’re the one with the cancer. It’s the ups and downs that I’m struggling with and the uncertainty of each day and how one day turned my life upside down.
I hope they keep making strides in new medicine to treat MBC. Like they have for HIV.
Your grand baby is beautiful. Happy your getting good results.,
Hi. Good to meet you. I am the same. De novo. No known family history. Hormone positive her 2 negative. Small breast lump (can’t be felt, missed on a mammogram) and some bone mets. 3 weeks into treatment. Lovely to meet you. X
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Hi I'm new to this group from KS
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