Breast Cancer Now Forum

Hi Mary, Changes to taste are a known side effect of protein kinase inhibitors (the drugs that end with -ciclib). Is she experiencing a sore mouth, and what are the changes she's experiencing? (i.e. bitter, salty etc.) The general suggestion is to try different foods to see what tastes OK, but if she has a sore mouth that could indicate mucositis (inflammation of the tissue in the mouth), which might be treatable. Always worth mentioning to the oncologist, as they should have plenty of experience with this side effect. Cheers Andy ... View more

Hi Deb, No oncologist worth their salt should try and guess how long you have left. Especially as there are a myriad of drugs yet to try/retry and the only progression is to bone and liver. My wife has flipped between ER+, to TN, to ER+ again. She had mets in the bone, which were treated and have healed. Then she had mets in the liver, which according to the latest PET are no longer active. She is on Cape, but at a much reduced does due to side effects, and also Avastin. She still has active cancer in some lymph nodes around her neck which are ER+, so they've added exemestane. It's a process, and her oncologist's answer to the "how long" question is, and always has been, "ask me again in 5 years". Have a look here at all of the drugs approved to treat breast cancer: https://www.cancer.gov/about-cancer/treatment/drugs/breast There are so many, and until you've tried all the applicable treatment options, "terminal" is not on the cards, which I take to mean as "nothing more we can do". Hopefully your liver biopsy will reveal the nature of the beast, and you can get on with treatment. Don't forget that new drugs are being developed as we speak too! I know it's hard, but try to remain positive, and enjoy life!   ... View more

Hi Andy, Best case, your wife will be stable on these drugs for many, many years. My wife wasn't so lucky and had a spot of triple-negative pop up, so had to have conventional chemo for that, which also failed after a while as it came back again, this time as hormone positive again! Everyone is different, as are their cancers, so we just have to keep going. New treatments are coming out all the time! Cheers, Andy ... View more

Hi Andy, All the "ciclib" drugs work in much the same way. The only real difference is the side effect profile, and palbo is probably the worst for the immune system, ribo a bit better, and abema the best, but with worse gastro symptoms. Cheers, Andy ... View more

Hi Maryarbab, I think it's pretty common for tumour markers to increase when chemo is started, something called "tumour flare". I would think markers after a few months have passed would be more accurate, and even than, they are very hit and miss as a clinical marker of disease.   ... View more

All breast cancers can metastasize. This will have happened before the tumour was removed. The long periods that some people experience between primary and secondary diagnosis can be attributed to the metastatic cells being dormant, then waking up and dividing. Also in the case or HR+ cancers, being on tamoxifen or an AI for 5 to 10 years could also keep it at bay, until you finish taking them, or the cells manage to grow anyway. ... View more

Hi Louise, My wife has stage 4 TNBC, and her CA153 is currently 26, which is "normal". As Jane said, I wouldn't read into these number too much. Additionally her MO mentioned that chemo can actually cause CA153 to rise, so as you're on active treatment that might also be affecting the result. Cheers, Andy   ... View more

Hi WMJ,   If you still have visible tumour on scans, I'd be surprised if they stopped treatment altogether. Maybe a maintenance dose of something? My wife is currently NED after chemo for spine mets (TNBC), and will still be getting maintenance chemo to try and stop it coming back. Cheers, AP   ... View more