How do you know if its progressing?

elisewjk

Hi Everyone, just a bit of a dumb question... I'm Stage 4 De Novo with bone/spine mets. I've been on Letrozole/Ribociclib/Denosumab for about 7 months now. I'm having restaging scans every 3 months... The first set of restaging scans showed "significant improvement" in my breast tumour and no further commentary re lymph node or spine mets. I'm about to go in for my 2nd restaging scans in about 2 weeks time. I don't feel much different than before I was diagnosed (except from the side effects of these drugs). So far, so good I'm just wondering, aside from results that may show on scans/blood tests, do you feel any different when the cancer starts to progress please? Should I be looking out for something? Pain? Or something else? What else have people encountered please? Any experiences shared would be greatly appreciated. Cheers

primek

I haven't personally experienced it but I know that some ladies have reported new pain in a different location. Some nothing at all. 

SoldierCrab

hi Elisewjk, 
I am not mets 
but wonder if you are part of the mets group ?

http://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer

you might get more information from the group 

angg66

I just started getting back pain that didn't go away. At first I thought it was muscular, but after months of physio, I asked my oncologist for an MRI. It was mets in my lower spine. But some women experience no pain. It really depends. 

Kat09

I was one of those women with no pain, no feeling of being unwell, no inkling at all that the cancer had come back. I thankfully still feel really well halfway through my second cycle of Xeloda for a secondary to my lymph nodes and a spot at the base of my neck C7. I guess we just have to make certain to get checked if there is anything that doesn't feel right or persists longer than it should, for me I was just lucky that my yearly scans in late March picked up the change in my nodes. My check in January was all clear so this re diagnosis came as a massive shock! If you feel well and strong hold onto that and try not to factor in what ifs because they're what do our heads in. I get rescanned in about 5 weeks and am already anxious about it but in reality I can't change the outcome, just have to trust that my treatment is controlling the spread of this hideous disease.

LEEMA

Hi, I am Stage IV De Novo as well - diagnosed in January 2018.  Mets to my bones, lungs, and brain.   I had no symptoms whatsoever before diagnosis.   I still feel really quite well, apart from slight side effects of the medication (mainly stiffness of the joints).  I am also on three monthly re-staging scans and also get incredibly nervous to receive the results.  I am taking the attitude that I’m not going to look for anything else - just trust the medication is working!  Try not to worry too much (I know that is easy said 😢).   I am currently on three weekly cycles of Herceptin and Perjeta, with Femara daily.  Sending positive thoughts - every day new things are being developed, that how I try to look at it xx

Deebs

Hi everyone, I have been on Ribociclib letrozole and Denosomab for 15 months my latest scan showed decreased  activity in my spine. The onco is confident that this medication is working for me and the side effects are limited but my hair is really thinning 🤔. Has anyone had the same problem? Also has anyone been on this combination for longer than 15 months...Hope you are all keeping well cheers Di 

iserbrown

Great to read that the combination is working a treat!
Best wishes 
Take care

elisewjk

H@Deebs, i have been ion the same combination of letrozole, ribociclib and denosumab just in 12 months successfully so far.  My Onco advises the next step would probably happen sometime between 10-20 months per the studies.

I have had some hair loss/thinning, not an extreme amount tho. I have a good hairdresser and we've just cut it really short. I've also been using the Moroccan Oil restore and replenish shampoo and conditioner plus leave and conditioner have improved the condition, thickness and volume of my hair. 

Best wishes and warm hugs

beatit

I too had no inkling the cancer had come back. Was also having regular treatment by my physio for a sore back which always seemed to resolve after a couple of treatments. It was only a casual comment to my surgeon that he decided I should have a CT and bone scan which picked up the mets in my spine. MBC had never entered my mind. I was started on Ribo and denosumab. Unfortunately they have not worked for me after 5 months as shown by my latest CT scan and so I will be starting oral chemo. It was shattering news but since joining this forum and reading other comments I am feeling in a better place.. There is so care and much support among everyone.

Kats162

Hi, I was diagnosed Stage 1V BC in June after a diagnosis of early breast cancer and treatment in 2009. I now have mets in my spine but have no pain. Just hoping it stays this way for a while.  I have been on oral chemo now (Capecitabine) for 2 months and  Denosumab monthly injections for my osteoporosis. I otherwise feel well and wouldn't really know anything was amiss apart from mild side effects of the oral chemo.
I too get very anxious about scans........have another bone scan planned for early January. My bone marrow does not seem to have recovered very well from the IV chemo. My platelets and white cells still very low.