Hi inspiring ladies!! After only 4 months into diagnosis of stage 4 MBC and 3 months on Verzenio and Fulvestrant, my medication has been completely suspended due to progression.
More lesions on the bones - pelvis and vértebra. My oncologist has sent off 4 blood samples to a specialist hospital to see if there has been any mutation and I am now awaiting results so I can go forward with a new treatment. All so unnerving and difficult but you are a great inspiration to me in this difficult time. Let's see if we can crack this lobullar MBC! Anyone with a similar experience?
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Tanyateresa
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Sorry to hear you already have progression. I’ve got lobular and ductal but my first line of treatment lasted 6 1/2 years. It was Anastrozole and Fulvestrant. Then I was on Ibrance and Tamoxifen for 2 1/2 years and now am on Verzenio and Letrozole for about 6 months. I hope your doctor finds a combination that works well for you and that you get many more years! Keep on trying and get a second opinion if needed! Good luck 🍀!
Hello. Fellow Lobular MBC hormone positive here. I was diagnosed aug to oct 2021, i have small spread liver and question mark over bones. Started on letrozole in oct 21 and Kisqali nov 21. Have zometa bone infusion started monthly for 3 months and now every 3 months. Touch wood this regime working well tumour markers went from i think 120 in nov 21 to around 40 now. Have scans in april and due to have knee replacement in May
The great thing for us is there seems to be several lines of treatment and more coming on board the whole time. I found some diary entries from when i was first diagnosed and really although coped well, i wasnt at all hopeful. I didnt even want to buy a rug for the floor as i wouldnt be around to enjoy it! Now here i am preparing for unrelated knee surgery. Ive done loads of travel, made time for friends, seen my daughter graduate etc. Can honestly say really enjoying the life i have and am less moany about the smaller things! I have scans 6 monthly at moment so tend to plan my life in 6 monthly chunks.
Best of luck today. Ask about all the options. There seems to be many.
Thanks for your positive reply. This is so helpful. You are right there are so many options but it is so difficult to know how serious each case is - perhaps even the oncologists don't know 🤷♀️
That's very true. One thing i hated was people saying its so important having a positive mindset. Thats very hard to do when you are a state of uncertainty. Someone else here posted they had read the important thing is to overcome fear. I found that very powerful. I think i did that with the help of a councillor. She said to view the cancer as a piece of me that i havent much control over and really ihave put trust in my oncologist to look after that. But i still have control over the rest of my life, how i choose to spend my time, with who etc. I founf that very helpful. I also found it helpful to stop thinking of my cancer as an alien invading me! I now think of it as rogue or naughty cells but still part of me. Again i read of some one who said her cancer is like the burls or imperfections ne you see on the bark of a tree where branches once were, imperfect but part of it. I know im talking like a hippy but think my diagnosis has softened me, i dont like hearing your so brave, or fighting cancer. It is just part of me noe and im. Desling with it. Anyway i've strayed a long way from your original post. I just was reminded of how i felt and wanted to reassure you. Do ask your oncologist to explain the path they see. I found that reasuring too. Best of luck.
I had a similar experience. I don’t have lobular but I started on Ibrance and after 3 months the scan showed progression and I also got lung inflammation. So it was not the drug for me. We then started on Piqray(I didn’t have the classic Pic3CA mutation but some other one) and my Mets got smaller. I must say I was initially disappointed that Ibrance didn’t work since so many get multiple years from it, but then I decided it is what it is, and there are many more drugs out there and I just need to keep taking care of myself and living the present. I’ve been on Piqray for a year ; the mets are stable but haven’t gone away and now my markers have climbed so I think we will be finding a new therapy soon.
I try to do as many things i love as possible. I also have found that being outdoors and getting good exercise feels like a good way to defy this cancer. I have always been a worrier but this time around I don’t think about the cancer unless I’m researching the science; I listen to updates from Dana Farber Institute and from UCSF. Everyone is different— some people leave everything to their onco but I need to understand what’s happening and the latest drugs, etc.
So these are some of my coping mechanisms. I’m sure you will find a therapy that works for you. I wish you peace and good health!
Yes Helen you have a great attitude and have given me some wise words to help me on my way- more helpful than my psychologist!!. I agree that you have to be informed as there are so many new things available all the time. I wish you well too on your journey.
Lobular carcinoma can be tricky. Mine went to the lining of my stomach. My sister had MBC that went to her bones and she survived for fourteen years. So far I am stable. Best of luck with your treatment. Prayers for you.
So disappointing to have progression😭Please remail hopeful as I have been on many different meds.Currently I have had 7 Enhertu infusions will very encouraging results.All the best to you❤️
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