Hello all! I don’t post much on here but I am on here everyday reading all of your posts and I have to say we are all one strong group of ladies. This rollercoaster ride sucks...
I am currently on that ride. I was diagnosed in Dec 2016 with numerous Mets to my bones. I was put on letrozole and Ibrance. Worked very well till this past sept where I started having bone progression. My onc switched me to faslodex with Ibrance. Everything has been stable and resolved since then. However my last scan this week now shows some very small areas in my liver. Bones are still stable. Which of course is upsetting.
I will be getting an MRI to verify that these are cancerous, which I assume are. If they are she’s switching me to verzenio and keeping faslodex. I’m very nervous because of side effects. This is my daughters senior year of HS and I don’t want to ruin it for her. As she does not know my situation. Just a couple people know. I have my reasons why I’m keeping it to myself so please don’t judge.
Just wondering who all has similar diagnosis and how you are being treated and side effects.
TIA
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Wildcat1
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I’ve had Ibrance and letrazole...stopped working and I had a liver met which was treated with SABR radiotherapy...was on Afinitor and exemastane which didn’t work and I have more liver tumours...I was advised to have chemo but just can’t face it and refused...now started faslodex injections and just hope they work
I’ve been extremely upset over this and felt that the treatment options are running out
I’ve always been active and felt young for my age...now I just feel ‘ill’...always in pain from my extensive bone mets and it does wear me down...however I make myself do things as the thought of ‘giving in’ scares me
Not taking the pills has made me feel better as they were making me so anaemic and permanently tired...although I have no experience of Verzenio I am assuming the side effects will be similar...I actually was not too bad with Ibrance and Afinitor apart from the anaemia but I must say I feel better not taking them
I admire your decision to keep your diagnosis to yourself....I’m afraid my husband told all and sundry about me and I was furious (still am!) about it...so stupid as now I feel people are treating me differently and I hate that...I would have just told the few that had to know ie my work colleagues and a few close friends...I’ve mentioned on here before that I avoid my neighbor as she puts on the pity face and says ‘poor you’ and that sort of thing...it’s embarrassing for both
My daughters are 32 and 27 and they know what’s going on with me but I try not to worry them unnecessarily so I just gloss over things and say I’m ok if they ask
When I had my initial diagnosis many years ago I never told my mother as it would have broken her heart...her sister died of breast cancer so what was the point in worrying her...so she went to her grave never knowing and I’m glad about that
I hope all goes well for you...there are ladies on here who’ve had liver mets for years and doing well...I hope I’ll be like them
Thanks for the reply. I am like you sad, mad and frustrated. My onc said there are at least 8 other treatments we can try and there are news ones also that will be made available soon. I just feel like a failure and all I wanted to do was make it thru my daughters last year of HS without bringing this to light.
I’m sorry to hear of your sister. And yes that is another reason I didn’t tell people is the look...
Thank you...you’re lucky in America as you seem to get access to new drugs before we do ( I’m in UK)
I’m getting a genomic testing very soon as I want to find out more about my type of cancer...I know I’m strongly oestrogen positive but the test was never offered and I have to pay privately
I know there are lots of treatments out there to try...but the word ‘try’ is bad enough...trying doesn’t mean will succeed...sorry I’m in the negative frame of mind today...other days I’m the opposite...power of the mind!!
Let’s assume the perfect treatment is just around the corner
I can’t offer you advice on treatment post Ibrance / Letrozole but I do remember my trusted onc telling me that treatment available to us is like a ladder and Ibrance for me was only the first rung of the ladder and there were many more after ! And with you being in the US you will get access to new treatments much sooner than us ladies in the U.K. .
I know how you feel about protecting your daughter as I was diagnosed with Mbc de novo when my daughter was the same age as your daughter is now . She was just about to start university in England and moving away from home ... this summer she is graduating ( under pandemic conditions !) and hoping to continue with a masters degree in London . I decided to tell her about my condition (her senior year at school was over and exams all done ) , but I didn't go into too much detail . I want her to have a full life without worrying about me ! So far she has coped well !
I also have only told a few close family members about my condition for the same reasons , and also have not told my mum who is fairly independent and in her mid 80’s , as she wouldn’t cope with knowing .
So we do all understand when you feel this way too and the ladies on here will be here to support you too . Sending love x
My mum also went to her grave not knowing I had breast cancer and I’m so relieved about that as she too, would have been heartbroken. Bless her ❤️
Jo xx
I have numerous bone Mets and took Ibrance and Letrozole for 2 years but always had low neutrophils and chronic fatigue. I had progression and my oncologist decided to skip trying Falsodex as he didn’t think it would help so I started chemo last month. Wednesday is my second treatment. I’m sure there are ladies here that take the same meds as you.
Have you had genome testing Sarcie?... just wondered why your oncologist didn’t think faslodex would work...I’ve just started that and was trying to feel positive but now I’m not so sure
I’m sorry to hear that...I have three new spots in my liver and one has increased in size...the first liver tumour was zapped with SABR radiotherapy and that’s gone...however the new ones are too numerous to be treated in the same way but I wouldn’t have it done again as I had awful side effects for about six months...in hindsight it was a waste of time
I had radiation on my hip and neck and I swore I would never do it again. It’s awful.
Hi,
I'm not on the same treatment as you, but I just wanted to say I am thinking of you. I can understand why you have not told your daughter that your diagnosis is metastatic. I have also kept my metastatic diagnosis to myself from friends and family. Like you, I don't want to worry people unnecessarily or to receive those pitying looks.
I'm sure there are other ladies on here who will be better able to advise you on the treatments you are on.
I’m currently in a similar to you. I was diagnosed with widespread mets, to liver, bone & lung following a fall in April 2018 where I fractured my humorous.
I started palbociclib & letrozole in July 2018 & added Denosumab from January 2019.
I had been doing really well with minimal side effects however a recent CT scan at the end of May has indicated there could be progession in the liver & also an under arm lymph node.
I had my MRI scan on Friday & I’m due at ultrasound & underarm biopsy on Wednesday.
The biopsy should indicate if my type of MBC has remained the same & also possibly indicate best treatment options.
It’s then an anxious wait for the results and worrying what the next treatment will be .... I’ve never had chemo or radiotherapy & I’m scared of both & really want to avoid if possible ..... but I do love life and want to live as long as possible but with quality of life.
I’ve researched all the possible next treatment options and will have to wait and see.
Any advice would be welcome - even a virtual hug please - it’s a challenging time for me!
On a brighter note, Teddy our little dog is 2 today and we are having round for a social distanced bbq probably in the rain 😂
I’m putting on a brave face but I’m hurting, I was widowed at age 43, losing my husband to sarcoma in July 2007, just after losing my dad to bowel cancer. I am happily married again and now all this ... we’ve been enjoying a fun life, I don’t want to be a burden - I don’t have any children ....
So sorry to go on and on - not really like me.
I wish all you ladies in a similar situation all the very best and at least we can share information and try and support each other. We totally understand how it feels.
Hope you have a good day today ! And happy birthday to your Teddy ( we used to have a lovely King Charles called Teddie !) . Fingers crossed for some dry weather today for your social distancing barbie ! x 🤗
Sending lots of hugs. Don't worry about going on and on. This is the place to do it. We all understand. I think it helps to read about others feelings at different stages. Helps me anyhow. So sorry for all your losses and sorrows. You are brave though and soldier on. That is great.
In January of this year, after 10 yrs. of breast cancer I had my breast plus lymphs removed. It was causing problems. I am so happy about this even though I know I still have BC in my hip and may have progressed to my left lung. I think, for me, it was good to have this large tumor removed. I hope it helped me in my battle.
I'm sorry about your news. This is a rollercoaster....and your riding it in silence in regard to your daughter. What a devoted mom you are! I do hope you have a close circle giving you support.
I'm in your same boat. Dx in Feb 2019, progression in spine in November. Now, a spot on my liver. I'm so disappointed and frightened. I'll find out Wednesday the next course of treatment.
I hope your new therapy works wonders, and you are able to enjoy your daughter's senior year! What fun that is!
Please let us know how you're doing. I've got my fingers crossed for you!
Bless you. I know how u feel about the senior year thing. I was bald for my youngest sons senior events but I had a wig and was able to attend everything without embarrassment. I have different treatment than you but I pray your results are great. Are you a KY Wildcat? I live in KY.
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