Loss of appetite: Secondary Breast cancer extensive spread to bones and lung possibly liver

Hi NikkiH and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi , I know how overwhelming and frightening it is when first diagnosed but you will come to terms with it with support from places like this or even counselling (that wasn’t for me) . Breast cancer now have online sessions twice a week on zoom too with people in the same boat. My primary was in 2018 stage 3. I was diagnosed with secondary in the liver Aug 23 and started on Abemaciclib and Letrozole. I’m still on it 2.5 years later and still stable. I’ve had many side effects including feeling really sick and severe dioreah. However, I reluctantly reduced my dose after a year as it became unbearable but I now have more good than bad days although I get really tired. I’ve been on lots of holidays and take each day/scan as it comes. There’s new drugs and trials coming out all the time so there reason to be hopeful! I have a friend with extensive mets who is also 2 years down the line. Take care and good luck . If you wish to message me privately I don’t mind. Xx

Thanks for your reply, It was making me feel worse that no-one had replied as it felt like my  worst fear was confirmed. Good to hear that you are stable after 2.5 years. Yes I've had diarrhea too but pain has definitely lessened since treatment started. I just wish I felt like eating, Hopefully that will come back. xx

️ it helps I think when someone is on the sane drug as Abemaciclib doesn’t as seem as common as other drugs on here tbh. Glad side effects are easing a little. Is it feeling sick why you have no appetite ? I started taking kefir daily which helped but I’d check with your nurse first before taking it. That seemed to help. I tend to only feel sick now when dioreah is bad but that has Improved. Good luck and I’ll pray your next scan is good. I’ve gad 2 the last couple days, results next week.  xx

Hi NikkiH.  Sorry to hear about your diagnosis.  I had stage 3 lobular breast cancer in 2013.  Had op, chemo, radiotherapy and then hormone blockers for 5 years.  I was diagnosed with secondary breast cancer in September 24 with extensive bone mets.  My spine is quite painful.  I am on Ribociclib, exemastane, denosumab and adcal.  I had a bit of diarrhea in the beginning but not for long.  I had to have my dose of ribociclib reduced from 600 to 400mg due a severe rash.  I have been fine with it since.  my husband and I went to Portugal last year in September and are going to Iceland next week.  I still walk my four dogs every day and have a good quality of life.  Hopefully your appetite will come back soon.  Big hugs.

Lee x

Hi Nikki,

Hopefully my post won't be deleted like few days ago,I am finding Jane McLelland's book helpful, I have breast cancer myself.