Sbc Diagnosed March 2021

Hi Daisy1257 

I have been on Ribociclib, letrozole, zoladex and denusamab combination since my diagnosis in July 2018. I also have breast primary with lung, liver, spinal and brain mets. Luckily I had brain surgery in July 2018 and haven’t had any further tumours in my head anyway.

i also agree with you so much about wanting to be around for my family. Life is not the same but your priorities change so much. You find joy in lots of things you may not have noticed previously.

I hope you go on to not have too many side effects with the treatments. 

best wishes

Hello Red13

Thank you for your reply. It sounds like you have been on quite a journey especially recovering from brain surgery as well. I hope you continue to do well.

So far side effects from ribociclib and zoladex have been very little. Although I only had zoladex this week so I'm guessing I may start with hot flushes in a couple of weeks once it's in my system!

Do you mind me asking about letrozole as I have not started that yet? Is it an injection or tablet? And any side effects for you? 

Have you been on this combination of meds since you were diagnosed or have they changed? 

Thanks again for replying it's so nice to chat to someone on the same meds and if there is anything you want to ask me please do, I know I'm relatively new to my diagnosis but happy to share info and help where I can. 

X

Hi Daisy 1257

Yes it’s been a bit of a roller coaster we thought at the beginning that I’d have the brain surgery and then that would be it sorted but no of course they then found the breast primary and other areas. It was a bigger fight than we first thought but still fighting.

Anyway when the hot flushes hit they can be quite a handful. I tend to have a fan in every bag and one of the cooling sheets in the bed otherwise a get soaking wet with sweat.

letrozole is a tablet that you take once a day every day not like the Ribociclib that you only take for 3 weeks and then have a rest week. The main side effect I have had from the letrozole is joint pain and aching. 

I am very lucky that I have been on this combination since the beginning and my 3 monthly CT Scans have remained stable. The dose of Ribociclib has gone up and down depending on side effects and 

I hope you continue to feel well and it is great to chat with someone on the same treatment. I don’t know all the answers but if you have any questions I can try and help.

Hope you have good support at home? I have a 18 and 10 year old so I Know how it feels to worry about the family and being there for them. Stay safe. 

Red 13

Hi, I was diagnosed yesterday, breast primary but also in my lung. I don't know what happens next or even if there is anything that can be done. I'm terrified, oh and not good a waiting! I hope the side effects continue to be minimal for you. 

So sorry to hear your news. I’m no good at waiting either but since my diagnosis it’s been a big part waiting for appointments, results and then the reviews and hoping everything remains stable. I hope you get more information soon on treatment plans. I always find information helps with the anxiety gives you some control in an uncontrollable situation 

Red13

Hi Jude3

I am sorry hear your news. Do you mind me asking if they have said what the type of cancer is? Mine is estrogen positive. They did a biopsy and within a day or two they knew it was this type.  Then it was an appointment with the oncology doc to talk about a treatment plan, this all happened really quickly. I was still in shock when talking to the doctor about treatment.

I hope you find some info out soon, I definitely started to feel better once I had a treatment plan in place.

X

It's very encouraging news to read that all your scans have been stable. I have read some good and positive articles on the medication we are both on but it's nice to hear about an actual experience.

Yes I have brilliant support at home, my husband is doing a fantastic job and all my close family are positive and upbeat which is what I need.

Yes your right all of the worry is for the kids and being there for them. Have your children dealt with everything OK or as well as they can do if you don't mind me asking?

My first CT scan is the 8th May, I am not sure that's a bit early as I haven't started letrozole yet but I suppose it will give me an idea how effective ribociclib is?

I am also on Tamoxifen, are you on this as well?

Take care

X

I have only had a CT scan, so know it's there but nothing more. Breast clinic appointment on Monday, for ultra sound, mammogram etc I'm just hoping there is treatment of some sort available, . Thank you for replying, it's good to have made contact with people who understand. x

Hope everything goes okay for you on Monday and that you get a treatment plan then. Red 13

I have recently been diagnosed with secondary on my sternum seeing my oncologist in 2 weeks for treatment plan the waiting is the worse part. It is nice to feel you are not alone . Thankfully there are treatments to hopefully keep us going. Sending love to you all.