I have the most common BC er+ her2 neg with 2 nodes with cancer. So originally I was told chemo surgery radio tamoxifen. But now they want to give me other drugs and mentioning trials and targeted therapies. They seem to think I’m at really high risk of it spreading but I can’t really understand why? I’m 45 with no sign of it anywhere else in the ct.
chemo didn’t work that well but it worked nearly 50 per cent, but if I’d had it after surgery I’d be none the wiser and would have nearly finished treatment.
I just feel I don’t have the capacity to try anymore drugs that I may or may not need. But with 3 young kids do I have a choice, but at the same time the nature of my work means I probably wouldn’t be allowed to do my job.
Just bummed really, I was so happy yesterday that my lymph node clearance was clear so I can’t understand why they want to give me more drugs.
Hi starburst
It’s hard processing everything and then having to deal with it, isn’t it? Wouldn’t it be easy if they could just take the lump and that’s it…but no life gives us these challenges.
I don’t have an exact answer to your question, it could be the grade, size, family history. They do genomic testing (not sure on spelling)which looks closer at the cells…that can contribute to your risk factor.
The only way to know for sure is to ask. My BC nurses have been great and answered all sorts of questions from me, and what they didn’t know, they found out.
Hope you get an answer, it may help you going forward.
Take care x
I guess if chemo worked 50% that is why. It worked 85 to 90% for me which was the best I could expect. However it came back within 6 years. Mine was quite big though but not in my nodes. Now it’s in my scar tissue where 2 sentinel nodes were removed but they don’t think it’s in my nodes. It can still spread though and it’s HER2 this time too so more aggressive.
Very confusing and mind boggling when you get offered lots of options sometimes it does not compute.Take your time to get as much understanding of it all as you can - use your BCN use the helpline here write questions down take someone in with you and compare notes about what they thought was said with what you thought. Get them to spell out for you exactly what they mean in a way you can understand because these are not small decisions.
Re medical trials ; if you are tempted to go for it find out how long they have been running that particular trial at your hospital . I signed up to a medical trial and I was the first person on it it in my hospital , and it was all a bit disorganized to begin with . However when you are on a medical trial they are literally invested in keeping you safe and well . Xx
I think it’s because it’s been 4 weeks since they dropped targeted therapies into conversation after my lumpectomy and snb. Then when the surgeon gave me the results of the node clearance today, she said the onco will offer you more treatments so wait until you speak to them. Which is how many weeks until that appointment I don’t know!! So many weeks of wondering, what’s going on.
Yes the waiting is really hard. For me, I just want it finished. I’ve not long started Tamoxifen and waiting for rads appointment.
Look to the future, and hopefully this will all be in the past
Thinking of you x
I was told similar and I kept ringing up and chasing! Hate to be that patient but things were moving quite slowly (outside of published guidelines) - can you do the same? Definitely do ask, and get your CNS to ask on your behalf to? You should be able to ring CNS any time I think?
My guess - and I have no idea - but my total guess would be that they now know your cancer responds 50% to chemo which is enough for now but IF it were to recur (God forbid) in a place that is harder to do surgery on, that chemo might not be enough. So they might want to try and find something that is really effective now to reduce risk of recurrence or challenges with treatment in the unlikely scenario of recurrence?
I am on targeted therapies and find it way better than chemo, it might not be so bad?
But do ask!!!
Sorry this is so hard.
Hi starburst, I am older than yourself but I also had a er+ breast cancer with 2 affected lymph nodes and I am presently on a targeted drug following chemotherapy. I do understand how you feel as after 2 surgeries, chemotherapy and radiotherapy I felt that I had had enough. Your medical team is on your side and wants to give you the best available treatment which gives the best chance of a cure .
Unfortunately oestrogen cancer can come back many years later. The cancer cells can lie dormant and these cells can cause a recurrence. Targeted therapies such as Abemaciclib, which I am presently taking, are fairly new in treating early oestrogen breast cancer and although the data is still immature they appear to be more effective in reducing the risk of recurrence than chemotherapy and have only been offered in the past 2 years for high risk oestrogen based cancers.
I hope my post hasn’t increased your anxiety and I wish you well with your recovery.
No you haven’t increased it all, but…
What was it about your cancer that made them think you needed the targeted drugs in addition to the usual? This is what I don’t understand about mine.
Hi Starburst,
My breast cancer is a grade 3 and had 2 affected lymph nodes. Those 2 factors make me eligible for Abemaciclib, which is a targeted drug offered to high risk oestrogen positive breast cancers. Other factors to be eligible for this drug are; you have to have a tumour that is larger than 5cm with 1-3 lymph nodes or have more than 4 lymph nodes affected by cancer.
Larger cancers, cancer in your lymph nodes or a grade 3 breast cancer are all factors which studies have shown increase your risk of future recurrence. The Monarch E trial has 5 years of data which show that taking Abemaciclib for 2 years reduces the risk of recurrence in high risk early breast cancer and in fact it is more effective than chemotherapy. My oncologist told me it was my best chance of a cure.
I have grade 3 too. So I’m guessing that’s why then but predict breast gives me high chances of surviving 15 years regardless! So is there much need really I’m thinking!!. How do you feel on it, were you ‘grateful’ to have it so to speak?
Thanks for replying to me.
Hi,
I can’t lie, some days are difficult but on other days I feel fine. I’m a year into the treatment and will be pleased when it’s done. My oncologist gave me a 73% chance of being disease free at 5 years without Abemaciclib. Predict is for survival not disease free survival and I’ve read on here that version 3 predict is not used by oncologists they use version 2 but I’ve not looked into that fact it’s only what I’ve read on other posts. I’m sure when you see the oncologist they will give you all the facts.
Hi Starburst,
I too am on abemaciclib and have been taking it about a year now. At first I was like you, very reluctant to take it, scared after reading the side effects and surprised to be offered it. My oncologist recommended it out of the blue and I knew nothing about the drug. Like you I had had enough of treatments at that point
My oncologist knew how frightened I was and offeredto start abema at a lower dose. I posted on here for more info and got some good, gentle advice from other women taking it. I was very grateful for that advice and once I knew a bit more about about the drug and read about the benefits I decided I needed to at least try it. My oncologist listened to my fears and started me on the middle dose of 100mg twice day. I tolerated it fairly well. The first few months were difficult at times, cramps and diarrhoea, two or three times a week being the main problems for me. I used the imodium prescribed with the drug a few times and only needed one. After that first few months it settled to one or two episodes every fortnight and I didn’t use any more imodium.
Three months ago I decided I would try to increase to the usual starting dose of 150mg twice day. To be honest it has been much tougher than the lower dose. I am very fatigued. I have short episodes of diarrhoea every day but do not take any imodium. My appetite and fluid intake are both good and I dont feel the imodium is necessary in my case. I am considering asking to reduce back to 100mg but giving it a bit longer.
My cancer was 2.5cm, grade 3, er positive, her2 negative, lvi present. I had full node clearance and two out of the 36 removed were cancerous.
Most of the posts about this drug on the forum are from women needing reassurance and support with their symptoms. It makes sense to me that there will be many women with no, few, or very manageable symptoms who we dont hear much from as they don’t have any worries. You may be one of those!
As @shade says, Predict is about survival, not disease free survival and the latest model does not seem to be widely used at this time by most oncologists. My onc uses version 2; I go with that figure for survival scores and then add a bit on for the abemaciblib. My radiotherapy consultant suggested that 
.
Talk to your onc a bit more to get a better understanding and keep asking on here too…its a very supportive forum. Remember you can reduce the dosage. I’m very glad I chose to take it, its an option we didnt have a couple of years ago with significant benefits to those of us with high recurrence risk.
It is a big decision, find out a bit more and do what is right for you. Wishing you well starburst, whatever you decide xx
Thank you for your lovely message, sorry to hear you are tired, only a year to go and you’ve done your time! I feel a bit like it’s a jail sentence!! Have you got on with everyday life ok? Is the diahrea unexpected so to speak, can you get to the toilet in time. Is it awkward when out?
Hi Starburst,
Yes, halfway there and counting down…the time has passed fairly quickly for me 
.
I am much older than you at 67, retired and not working so can only imagine all the extra challenges you will have had throughout your treatments so far. I admire all of you working young women with children to look after too. It must have been very difficult many times. You are an awesome bunch 
! My husband is also retired from work and very supportive…I rely on his help a lot with cooking, heavy shopping (I developed mild lymphedema) and housework.
If it helps at all, I have seen on this forum that by far the majority of women find abema much, much less harsh than chemo. Also, regular blood tests are standard throughout the treatment. Your onc wants you to keep you well and have a decent quality of life. If you do go ahead and struggle, other medications for side effects can be offered; remember the option of dose reductions or stopping altogether if its too much.
When I first started on the 100mg, I quickly learned to spot the signs of an episode of diarrhoea coming on. For me, I would get mild cramping getting stronger and then need the toilet quickly about 15 minutes from starting with the cramps. If i was woken from sleep with cramping I usually needed to get to the bathroom straightaway. I have had one accident in bed during the night.
In my experience diet changes are often helpful for many of us on abema… I feel fortunate to be able to eat a good variety of foods that do not give me diarrhoea. We learn very quickly which foods trigger us. I eat salads, fruits and vegetables, wholewheat bread, pasta and cereals, curries snd chillis with very few problems. For others these foods are a complete no no. My list of “never to be touched again til this shite show is over” are pork pie, battered fish and chips with mushy peas and cashew nuts. Big NO, high fat foods are definitely not for me. I have also cut right back on hard cheese and full fat yoghurts but this is partly because I have had high calcium blood levels since diagnosis and am now under endocrinology for investigations.
I do get out. Town is a ten minute bus ride away and I dont walk far. I know which stores have decent toilets and carry a small pack of tissues and wipes in my bag with spare pants. We go out regularly on a Friday afternoon for a couple of hours to a pub, also a short bus journey, and meet up with family. There is a toilet for the disabled. I dont eat a meal but do have one, sometimes two alcoholic drinks with no noticeable after effects. (Oncologist has okayed moderate alcohol drinking)
If I go further, for meals out or longer celebrations, with my symptoms as they are now I would probably take an immodium as a preventative before going out. I also have imodium Instants in my hand bag that have been there since starting chemo…they are still unopened. I would also wear an extra long discreet pad and take a spare one just in case, along with my tissues, wipes and pants.
I dream about the time I will enjoy a pork pie again, it will be top of my Christmas shopping list 2025…cant wait! 
. Happy Halloween by the way, if you celebrate with your young ones xx
Hiya!!
I’m very similar to you, 45, Er+, Her2-, 2 nodes. I had a 7cm mass, grade 2 stage 3.
I’ve had mastectomy, Chemo and radio. Started on tamoxifen, not tolerated Zolodex so will be having my ovaries removed in a few weeks, so then will swap from Tamoxifen to Letrazol.
As my onco said I was high real for reoccurrence , I am also on Abemaciclib, have been on it since April, it’s tough but there was no doubt in my mind that I would have everything offered to me to make sure that I don’t have to go through this again…
Sorry to jump in but how do you know how much it worked? I had surgery then chemo and radio but they won’t give me scans to see if it has spread or to see if chemo effective. Thanks.
I had chemo first to shrink it for surgery. I was on a trial but came off it as not suitable for me.
You need to have chemo first and then they can tell how much it has shrunk at the operation. Having chemo after the tumour is out, you can’t possibly tell what effect it would have on the tumour. Chemo after is really just to mop up any stray cells.
Hi all,
Due to start Abemaciclib too with ER+ Her Neg and one lymph node following recurrence (also on anastrozole plus zoladex plus zometa). Nervous about taking Abem in case I don’t tolerate it. As very concerned about another recurrence. Anyone have more advice at preventing the side effects especially dietary or time that you take it?
Also anyone know what happens when you finish the two years? Given this drug is so new but also so expensive wondering why it’s only 2 years?
Thank you all!