Hi, have just been diagnosed with secondary breast cancer (after 11 years) I am to start ibrance with letrozole. As I'm 48 I'm also getting monthly injections to suppress my ovaries.Would love to know how you're getting on with the treatment and whether you have any advice.

Gosh I have a very similar history. Diagnosed in Jan 2016. Found the lump the day David Bowie died. I wanted a mastectomy , had that and usual cycles of chemo x6. Then developed back pain last feb 2019, eventually went to gp and mr scan revealed Mets L4 spine, PET scan revealed Mets C5, T2, rib and a small area of lung. Been on palbociclib and letrozole for 9 days now and suddenly pain has worsened. Has anyone else had exacerbated pain since starting the Palb.?

Hi, I am also on palbociclib and letrozole. Started the letrozole back in August following surgery for mets at T1-6. My back is now full of metal! Owing to further surgery for wound infections I wasn't cleared to start the palbociclib until January 2020.

I have had issues with the aromatase inhibitors and swapped to anastrazole for a brief period but decided the letrozole was the least worst opition. It gives me joint aches , mostly in my hands and fingers, as well as hot flushes but tolerable. Pain has not been an issue but I am on a range of pain killers following the surgery, so not surprised I have no pain thankfully.

My last scan showed that my disease control is stable so my oncologist is unwilling to completely stop my palbociclib as it is clearly having an effect, so I have been reduced to the lowest dose and will be reviewed when appropriate. Needless to say I am in "shielding" against the coronavirus.

Stay safe everyone

Quite similar story myself.   Had replacement hip last year due to a fall, and further x-rays, CT scans etc, found I had secondary cancer, mainly in bones, spine, vertabrae, . .I wasn't having any discomfort before the fall so it came as a bit of a shock .  I was first diagnosed in 2003, had lumpectomy, annual Mamograms, nobody advised I should be getting other tests.  .

Anyway I'm on the ibrance, and Bone strengtheners since last October, and recent scan shows no spread so responding well to meds .  . I too didn't get my injections this month due to Corona.  

I've 2 young children,  I didn't take this diagnosis very well last year, I assumed I was dying, but I have calmed down a little, but know I won't be around for my kids teenage years . . 

Hi I was diagnosed in 2004 with BC. Had mastectomy ln left side and lymph nodes removed. They were all clear so had chemo and for 10 yrs had regular mammograms which were all clear. Ive had sciatica since i was 17 so when i got a pain in my groin, December 2018, on right  side going down my leg I knew it was a different pain than usual. Dr said it was typical  sciatic pain.  If it gets worse come back  and we'll do a scan.  When I actually put my back out, May 2019, from compensating for pain in my groin i got an MRI which showed a mass on L1 on spine.  Saw condultant and she had me lay on my back and lift my right leg. It moved about 2 inches. I was so shocked i couldnt move it!!   I was told cancer was in my left lung and lymph node in my chest as well as my spine.  Ive had mass dose radiotherapy on my spine withing 2wks of seeing consultant which left me sick and in so much pain!!! It lasted about 4/5 days. I was put on letrozole and  palbociclib as well as the now 3monthly injection for bones.  Im relatively pain free (i take codeine and gabapentin for lower back pain which is wear and tear).  These meds have stopped my cancer for now even though im about to be put on lowest dose they are working.  Ive carried on with palbociclib during lockdown as well. 

Its scary coming out of my safe bubble to go for bloods and meds but worth the risk ... for me and my situation anyway. 

Xxx

Hello Paddocks, 

I am Stage 4 breast cancer to liver and bones. I read all the time on the breastcancernow forum about women who go on for eleven years plus with bone only spread and new treatments are coming along all he time. Don't give up on seeing your children get into teenage.

Sorry to shang-hai your thread. Always looking for felluw Stage 4er-s.

Ceyenne

Hello

I am messaging for a bit of morale support. Recently diagnosed with stage 4 breast cancer with mets to the spine. Going to collect the palbocilibib tomorrow and to have my first bone strengthening injection. I have been a complete wreck and very worried about side effects and the meds not working. Feel lost and alone. Not sure how to deal with this. What are the most common side effects. I have been taking Letrozole for the last few weeks and had x2 zoladex injections. Any advice much appreciated xxx

Hi Lizee.. here for moral support!!!  I know it's scary. You must feel very frightened but Palbociclib is the most wonderful drug for Stage 4 mets. In my experience the response to it is great and should get your markers down and/or steady so you can live your life with more confidence. I think side effects differ but a common one is very dry hands and sometimes feet too. Go into taking it with as much positivity as you can muster xxx

Hi MCELS

thank you for replying to my message. It’s all a bit daunting but hopefully the drug will help. When the nurse gave me a list with all the potential side effects I was quite shocked but if I want to keep going, I know I don’t have much choice. X