Breast Cancer Now Forum

No, not had any eye probs with denosumab, not heard that one before.  I just feel "creaky" first thing in morning especially ankles and if I sit around for too long I get very stiff - but not sure whether that's the ANASTROZOLE or denosumab.  Meant to say earlier I started ANASTROZOLE once chemo finished ... And also meant to say I am now 47. No idea why ANASTROZOLE always comes out in caps!!!!  ... View more

Briefly my story is ... Diagnosed with BC in 2010, usual surgery, chemo (TAC) and rads. Then onto tamoxifen. Routine ongoing scans all fine until end 2014 when some rogue BC cells were found in one of my original scars.  Further scans found a plural effusion and 3 bone mets.  No symptoms at all so changed to Letrozole and denosumab but scan 3 months later showed "extensive" liver mets (again no symptoms).    Onc offered the Concept trial as alternative to weekly paclitaxel.  This was March 2015. As its randomised I thought I had nothing to lose, if I got cabazitaxel I'd have the chance of trying another chemo that may or may not have been available at a later date.  If I got put in the other arm of the trial I'd be having the chemo recommended anyway.  I had no hesitation really (and I think I was one of the very first to enter the trial).  Anyhow, I ended up in the cabazitaxel arm and found it "doable".  I was told to expect to keep my hair but it thinned a lot to the point that by the time I finished the six rounds I had resorted back to wearing caps in public for about 8 weeks (but kept it for the whole of the chemo process). I had no sickness - indeed the protocol does not include steroids or anti sickness.  Apart from generally feeling a bit rubbish for a couple of days, my main SE was taste.  I had a yucky taste in my mouth and each round got worse and it lasted longer.  As I felt OK ish otherwise it was a struggle (although I hung around bakeries and Indian takeaways for the smells and watched food channels all day long making lists of what to eat as soon as the yuckyness went away!!!!).  The liver mets reduced at each of the scans during treatment (although the trial deemed me as stable because of the way they measure) and the end of chemo scan showed average reduction of over 50%.  Next 2 scans showed further reductions and last scan in May showed a normal liver and no fluid left from effusions. Equally denosumab has done its thing on the bone mets. I gather that it's still early days for the Concept trial but results so far indicate cabaxitaxel as another chemo drug for SBC, not the miracle drug we need but something else to give us more time.    I know many think of trials as last resort, I think that's untrue, I used as a first resort! I would have no hesitation in recommending a trial. You get well looked after, and of course you can leave at any time.  I know your decision may be harder if you are being offered a chemo that's not paclitaxel, but I hope the above, great long ramble, is helpful in some way! ... View more

Hi Lesalanos   Are you looking at the Concept trial using Cabazitaxel? If so I am in it and can share my experience - if it would be helpful.     ... View more

I think there's a misconception about trials.  I joined a trial last year before any other options - so the opposite of last resort! My thinking being (like you Spudgirl) I could access potentially a new chemo drug now (it is a radomised trial and I luckily got the drug they are trialing) and save other options for later.  I felt I only had a possible gain in the situation.  My oncologist (who runs trials often) gets very frustrated about other oncologists keeping trials for "last resort"!       ... View more

Have a look for AyaCovers on Etsy. Found them perfect, best range of designs and I think about £7 each. although from USA, I recall they came really quickly.  Everyone used to ask where they were from, when my line was removed I passed them on to the lady in the next seat! ... View more

Didi62   i found out I had SBC Oct 14 - firstly pleural effusion, then bone Mets and in Feb 15 "extensive" liver mets. extensive sent me in a spin - did not sound good so I opted not to ask any more questions!  Onc suggested chemo and I did that March -July 15.  End of chemo scan showed average reduction of 50%. Then started taking ANASTROZOLE and had 8 weekly CTs.  Nov and Jan 16 scans continued to show further reduction of liver mets and Jan was declared as "low volume" so Onc said to move to 12 weekly scans.  About 4 weeks ago I had latest scan and liver mets gone.  Liver is normal (just some fatty disease showing so advised to think about diet!). Onc happy and no scan needed until late September.     I hope old this helps a little. Once you get in and discuss treatment plan with your Onc I am sure you will start adjusting to the new normal. Sorry for all typos in this message.  I think there's a glitch at moment as several others seem to be having issues as well!   ... View more