i am am sorry to hear that you are having such a hard time. I am new here still, only a month since my secondary diagnosis, but I am on Ribociclib, which from what I have read is a 'kinder' treatment than other similar drugs, so I wonder whether you could be given that instead of Abemaciclib? I don't know why they prescribe the different ones ending in ciclib, but it may be worth asking.
I am 50, post menopausal as I had my ovaries out when I was 41, 2 1/2 years after my primary, which like my secondaries, was ER + and PR + and HER2-. My secondaries are in lymph nodes and sternum.
i do hope that you find something you can tolerate and which works for you soon.
All the best
Sorry to hear you've not been feeling good, and that your blood count has put the Abemaciclib on hold, fingers crossed that it's back up this week.
The Diarrhoea is a pain in Abemaciclib but I have found that mind has settled a bit over the 6 months, I take 1 Loperamide in the morning and that keeps it in check.
Here is a link regarding the trial....
Thank you for replying. Do you have any more information about the lobular trial?
I went for my checkup last week and was told that they were going to put the abemaciclib on hold for a week because my blood counts are all lower than they should be. I’ve been back this morning and they’re still too low to put me back on the abemaciclib. They’ve booked me in for a blood transfusion a week tomorrow, so I’ve got to go for blood tests on Monday and then again before I see the oncologist on Thursday to see if I’m well enough to restart the abemaciclib. It seems a bit like one step forward and two steps back at the moment. I’m tired all the time, uncomfortable due to back and joint pain and suffering with diarrhoea.
On a happier note I had a lovely weekend spending the day with friends on Saturday. We took them to the local wild life park and there was a meet Santa Claus experience too. The kids loved it.
I'm 47 and was given a De-Novo diagnosis earlier this year with spine mets. I also have lobular with the same profile as you'rs and I'm on Letrozole, Abemaciclib, Zolodex and Zometa. So far I have very little in the way of side effects and so far my scans have been stable.
I'm with everyone else about asking about prognosis, we are all different as is our disease and who knows what medical advances are around the corner! I believe there's a Lobular trial going on at the moment....
Thank you for your reply and common sense approach. I have been doing some research and making sure that it is as up to date as possible. I like to be informed but have been a bit backward in asking all the questions I want answers to. I think I'll take a leaf out of your book.
Many thanks and best wishes
Thank you for your response. I don't mind you asking at all. I believe it is helpful to us all to share information about our experiences.
I know the cancer has spread to my bone marrow as I had a bone marrow biopsy to confirm the diagnosis, followed by a lymph node biopsy. The bone marrow biopsy together with a CT scan showed where I had metastatic breast cancer. The lymph node biopsy revealed the exact type of breast cancer, invasive lobular breast cancer that is ER and PR positive and HER2 negative. The blood tests I've had show that I'm anaemic, white blood cell and platelet counts are low. This is because the cancer is taking up space that should be occupied by healthy bone marrow.
By way of background information, I had a hysterectomy when I was 41 but my ovaries were left behind. I'm 54 and post menopausal now. My most recent mammogram didn't show a primary and I've had regular mammograms for the last 10 years, since I had a nipple discharge. I was recalled after a mammogram 4 years ago but the doctor who followed up said there was nothing to worry about. I've examined myself regularly looking for lumps, but they don't tell you that lobular breast cancer doesn't form lumps.
I'm due for my next check up on the 11th.
Good luck with your treatment. Let me know how you get on.
i am similar to you in that it is just under 3 weeks since I was diagnosed with secondaries and they are in lymph nodes - apparently this is quite rare just to be there. I am starting Fulvestrant, Ribociclib and Denosumab on Wednesday.
if you don't mind me asking, how do you know it is in your bone marrow?
I had Letrozole for 2 years after I had my ovaries out, which was 3 years after my primary diagnosis, with very limited SEs. All the best with your treatment.
Thanks for adding your voice of experience, I will read it again when my head stops spinning. I also like to research for myself, but there seems very little info about my type of mets.
Hi ladies, especially those of you newly diagnosed with secondaries and waiting to find out what happens next.
Breast cancer, and that includes secondary breast cancer, is treated according to what the receptor status of your cancer is. If a biopsy has been done of your primary, or a recurrence, it is assumed your secondary will have the same receptors and subsequent systemic treatment (ie one that affects the whole body such as chemo, Herceptin or hormone treatment) will reflect that. Occasionally more targeted treatment is also used such as surgery or radiotherapy which only affects a specific area of the body. We all react differently to these systemic treatments therefore it is difficult for anyone, even your own oncologist, to give a prognosis. Sometimes, after it is established how your body copes with the treatment and side effects and how well it responds they may be able to be more specific. However my experience, of living with secondaries for over 11 years, is do not ask! It seems most oncologists still quote incredibly out of date survival figures, ones that were on the internet in 2008 when I was diagnosed with my secondaries and have still not been updated even though there really has been a number of new treatments available now that weren't then. Obviously if you really want to know then please ask but it's not necessarily relevant (until they have some indication about your response to your particular treatment) and quite frankly can scare the whatsits out of you!
What I have found helpful (for me) is to research my particular type of breast cancer and be aware of what treatments are used - this forum is very good for asking questions and getting proper, up-to-date answers from ladies who have experience of different treatments rather than the general info given out at hospitals. I've always found that educating myself has helped me deal with what this awful disease throws at us and ready to challenge my oncologist if I feel I need to, as I've done on several occasions. I might sound very direct but for me I want to know as much as possible so I am prepared. Having said that it didn't happen overnight, I had to find the right time to do this and when you are first diagnosed it is all such a blur you probably don't want to find out anything.
i am sat in the radiotherapy waiting room. Everything is just so scary and unknown isn’t it!
Both consultants I have seen (breast surgeon and oncologist) have unprompted used the phrase “many years” - what does that mean! Like you I didn’t want to press further. Better than a few months I guess!
Thank you for taking the time to reply. It is a scary diagnosis. I haven’t yet felt able to ask the oncologist how long I’ve got but I would like to know. Maybe I’m being a drama queen as I’ve read stories of others with this disease who are surviving for years. I feel that I’m being drip fed information about my diagnosis, which is frustrating.
I'm pleased that you’re finding the letrozole side effects manageable. The Denosumab was just a sharp scratch and it was over for four weeks. Good luck with your treatment.
Hope you are doing ok. It is a very terrifying place to be isn’t it. I have recently been diagnosed de novo and it is a huge shock!
I have my secondaries in my bones and having letrozole at the moment. I am finding it very manageable. Will be getting demosumab in the next week or so and then possibly some more drugs after I have had some radiotherapy. I think a lot of people on here have had similar so will no doubt have more info than me xx
I was diagnosed three weeks ago as having de novo metastatic breast cancer. I’ve been told that it has spread to my bone marrow, bones and lymph nodes. I’ve started treatment with Letrazole, Abemaciclib and Denosumab. I’d be really glad to hear from anyone else with a similar experience.