Metastatic bone disease

Please try not to panic.  My story is identical.  Firstly, the meds are very tolerable.  My only gripe is joint ache from Letrozole the rest is fine.  Everyone reacts differently to the meds of course but it’s really not as scary as it sounds.  I’m walking 3 to 4 miles a day with my dog.  Fatigue can be an issue for some people. I find the mornings hard but once I’m up and a few coffees I’m fine.  

finally, this can be controlled for quite some time so whilst it’s not curable it can be contained.     Unless, you’ve literally been told you’ve only got six months or so (terminal). 
strangely enough this becomes he new norm fairly quickly once you get into a routine with your meds.  

Ax

Sorry if I repeated my answer. I cannot see it, so here it is again in case it didn't go through.

Hi Michelle,

I am in the same situation.  I've just finished the 2d round of chemo and am fine aside from feeling tired and very dry, itchy skin. I feel actually lucky to have Palbociclib as it was not available on the NHS a few years ago, and is very effective with tolerable side effects. But I am still terrified, especially at night. I guess we'll get used to it... Take good care.

Hi Michelle, I was diagnosed with bone secondaries September past, 4 months after my primary diagnosis. I've been on the same meds as you since then, and I've honestly been fine. Same as AliWtem I also walk my dog couple of miles as day just as I did before diagnosis. Just hope the meds hold for a long time as this combination for me is really tolerable compared to the chemo I had for primary. Take care

Jools xx

Hi, after 10 years of remission my breast cancer was re-diagnosed (is that a word?) in November 2018. Two months after retiring and moving back to Yorkshire after an absence of 40 years. I was given a life expectation of around two years. 

I had iv chemo (Taxotere for five out of six sessions until my nails started lifting/dropping off and they were worried about infections). I subsequently started a regime of Palbociclib, Letrozole and denosumub over 18 months ago. I have tolerated this quite well, apart from joint pains, some slight nausea and thinning hair. Which is now straight after having curls all my life...( be careful what you wish for!). We managed to get a cruise down the Nile in just before COVID struck a year ago. I had plans to fulfill other ambitions, and am still fully capable of doing them, Pandemic permitting.

I sometimes feel like a fraud as people expect me to be quite ill, friends always comment on how well I am looking. Due for a scan next week, followed by a telephone discussion with the Onc on the 22nd. Hope the news will be on the good side.... still have quite a few things on my bucket list that got postponed because of COVID. 

It feels strangely reassuring that others are on the same treatments as I receive, hope that you can all help me retain that sense. 

keep safe .. Jenny 

Hi.

I hope the following reassures you.

Many ladies do very well on palbociclib; I know of a few who have been on it for a couple of years with manageable side effects. Also, there are many available treatment possibilities after that one.

I myself have had denosumab injections. They take just seconds to deliver and in my experience were painless. I even did them myself on a couple of occasions!

Best of luck.

Hi , I am on exactly the same treatment as you and have no side effects.  I live a normal life and no-one would even know that I have bone mets.  This year is my two-year cancerversary and I'm still stable after a scan in January.  Please check out the positive bc stories thread here - read about the ladies who are living for decades with secondary bc.

Good luck - you will eventually be at a point where you forget that you have cancer.

PS  As AliWtem mentioned above - it's not terminal unless we have been told categorically that we have less than a year.  There's a big difference between cancer being terminal and incurable.  As you'll see from the thread that I mentioned above, ladies live for 10, 20, (even) 30 years (!!) with secondary bc.  I don't know about you, but I don't regard that as terminal.  The way I see it is:  would you think of someone who has been diagnosed with asthma as terminal? Yes, asthma may well kill you one day but if you take your medication properly and listen to the doctors, you'll more than likely live a normal life with it.  Living with it, rather then dying from it.

Best wishes.