Hi Dawn,

hope your doing ok. I'm on exact same combo, been on it for 12 days and doing great, no side effects yet, so fingers crossed. Have bloods and see oncologist on Tuesday , I'm sure all will be ok though. Hubby full of a cold and cough so just hoping I don't catch that. 

babe x

Hi Babe, thanks for your reply, maybe the delay is because we applied too late and I am no longer eligible I go back Tuesday to see what's what, think I will have to go back again before Christmas , will keep you posted take care xxx

h

Hi Babe, how are you feeling? I hope the drug has started to kick in for you and your tummy is less swollen. I went to see oncologist today and I have got the tablets, start them tomorrow. Have to go back in 2 weeks for bloods to check on bone marrow and blood count. Found out something very interesting today, I don't know if I have told you already but when I went about six weeks ago they asked my permission to obtain my biopsies from when I was first diagnosed as part of research into your DNA and to see if any changes have occurred. Apparently they have found a certain gene in my DNA which could benefit me in the future how amazing is that. It's not a generic gene so will be of no threat to my two granddaughters. Well taking first tablet with breakfast tomorrow. Another adventure, will keep you posted. Take care xx

Hi Babe, sorry to hear that you are no better, I'm sure it will kick in soon. Poor you all that tempting lovely food. Were you able to go out over the holiday, I hope so the hospital you are under seem to be looking after you like mine. One of the oncologists phoned me at home after they found out I had this attractive facial thing, perhaps its an improvement haha. Had to check that steroids didn't interfere with cancer meds. He is a young Italian, he is so lovely. I always end up making them laugh, same with my GP. Got to phone him tomorrow as need more steroids. When I was in local hospital Thursday they did my bloods and my neutrophils were 2.6 which is good apparently but then have only been on meds13 days. Its a beautiful day here, frosty and sunny with lovely blue skies, makes me feel a hundred times better. Back to family again for lunch today, they live in next block of flats. She is my aunt, we are the same age, and have grown up like sisters. Her and husband are both very good to me and we have such a giggle, like two silly schoolgirls haha. Well Babe, you are probably yawning by now haha, so I'll say ta ta for now. Take care, love Dawn xx

Haha you are funny. You have a fab day xxx

Hi Babe, how are you doing? Has the combo started to kick in yet? I truly hope so, been thinking about you. I have now been on it for 16 days and so far so good. Went to see onco Thursday, bloods good. Had one ulcer on tongue, which probably be more painful, if my face wasn't frozen!!!!! No change there, no movement still. Hospital staff really kind about my face, but because I laugh a lot it's pretty obvious, so we all had a laugh about it!!!. You usually hear me before you see me I'm afraid. Any plans for tomorrow night? I'm just in with family Chinese take away, will probably be soundo by midnight. Hope 2017 will be a much much better one for you. Take care Dawn xx

Hi all 

was diagnosed with BC in 2016. Tiny tiny tumor I left breast. Stage one type three. Had surgery and removed tumor plus Centinal lymph. Onca type came back high(29) . Had five chemo and 35 radio. All clear October 2017. November 2017 started getting pain in back which escalated over Christmas and became unbearable by March. Two xrays showed nothing. Then had full bone scan which revealed that the cancer had spread  to many places. Mainly in bones and mainly in spine. Given many pain killers and started on zelandronic acid and fulvestrant.  Awful to begin on first application. But body quickly tolerated it. Then I got approval for combination of lerozol and palbociclib. Been on it for two weeks. I currently feel fine and I am carrying on as normal. I take it at around 1030 at night with snack. But I wake up at around five or six with coughing fit. Not had that before. Cough for some time and sometimes I get bad nausea. The coughing is extreme. And it’s concerning me. Is this a side effect of the two drugs as I took the letrozol for one month before beginning the palbociclib and did not seem to affect me. I am hoping this drug will keep me going for some years. Does anyone else have these kind of symptoms and do they go away ???

Hi all 

was diagnosed with BC in 2016. Tiny tiny tumor I left breast. Stage one type three. Had surgery and removed tumor plus Centinal lymph. Onca type came back high(29) . Had five chemo and 35 radio. All clear October 2017. November 2017 started getting pain in back which escalated over Christmas and became unbearable by March. Two xrays showed nothing. Then had full bone scan which revealed that the cancer had spread  to many places. Mainly in bones and mainly in spine. Given many pain killers and started on zelandronic acid and fulvestrant.  Awful to begin on first application. But body quickly tolerated it. Then I got approval for combination of lerozol and palbociclib. Been on it for two weeks. I currently feel fine and I am carrying on as normal. I take it at around 1030 at night with snack. But I wake up at around five or six with coughing fit. Not had that before. Cough for some time and sometimes I get bad nausea. The coughing is extreme. And it’s concerning me. Is this a side effect of the two drugs as I took the letrozol for one month before beginning the palbociclib and did not seem to affect me. I am hoping this drug will keep me going for some years. Does anyone else have these kind of symptoms and do they go away ???

ive been on the same combo. only side effects for me are hot sweats at night n general tiredness n more ratty with kids xx

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 was on letrozole and palbociclib but found the pain that I had stopped when I started the combination. I have just been told they are stopping the palbociclib until the Coronavirus is over as they consider it would make my risk of getting the virus higher. I found this quite disturbing at first but as recent scans have not shown much/if any movement in the cancer sites I guess that waiting for the results of my next scans in 3 months not quite so daunting. And hopefully if the next scans show any detrimental progress they would let me go back on them. 
I hope your pain has now been resolved and you are not getting any bad side effects. 

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