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Palbociclib

Prawn
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Hi, my name is Dawn, 8 years secondary breast cancer. I just wondered if there are any other ladies out there that are on Palbociclib/Fulvestrant combo. I was given my first dose of Fulvestrant yesterday, the Palbociclib has yet to arrive. Side effects of this drug are pretty scary, so I just wondered how other ladies are coping. Your feedback would be greatly appreciated. Kind regards Dawn

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    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

  • Offline in reply to babe
    Hi babe, thank you so much for replying to my post, was beginning to think, I was a loner on this one so pleased to hear that all is good with you, will keep fingers crossed that it stays that way for many years to come. Hope too that you don't get hubbys's cold. Have got MacMillan 24/7 hotline number which now gives them access to my once records. Can I ask you do you just carry on as normal, or do you take precautions? I am due to go to theatre just before Christmas, if I don't go feel I'm giving into cancer. Take care and I will keep you posted if that's OK with you? Dawn x
  • Offline in reply to babe

    Sorry ha just realised you meant Theatre to see a show... I thought you meant for surgery... o god sorry, I'm not normally this dizzy honest.. ha. O get yourself out girl, live live live, remember your living the life they are saving...I have a spoon full of Manuka honey every day, I swear that helps to stay well. Xxx

  • Offline in reply to babe

    Hi babe, how is it going? How many days is it now? Any side effects? I went for 2nd lot of Fulvestrant last Tuesday. Go back two weeks for another lot and maybe by then the US tablets will have arrived. Getting ready for Christmas and seeing my grandchildren, has kept me in the right frame of mind, although did have a 'down' day on Saturday, but different again today. Take care, love Dawn x

  • Offline in reply to Prawn

    Hi Dawn, sorry because I use this site on my I phone I struggle with it. Anyway hope your feeling ok. I just had three weeks on the drug and a week off, I'm going tomorrow (Tuesday) to hopefully get the bum injections and three weeks worth of Palbociclib. I haven't had any side effects apart from onnthe day of fulvestrant. When they gave it me for second time I instantly got tightness in my chest and felt so so sick all day, was a bit breathless too and had funny heart flutter. I read online it's a rare side effect but when I spoke to oncologist she said just keep eye on it in case of blood clot from Palbociclib. Anyway I know it's not the tablets, it's deffo a little reaction to fulvestrant, however I can cope with it because obviously there isn't much else left for me. I'm really swollen because of the liver, things have got worse and worse and I haven't been told when to expect this drug to work. I tried looking up how long before it kicks in , but couldn't find anything. I'm hoping tomorrow I get the next lot, I'm sure it's gonna take more than one session before it starts to work, well that's what I hope anyway because otherwise it means it's not working. Vinoralbine (don't know how to spell ) is only thing left for me to try after this. Will probably know from bloods if it's doing anything but again don't know when to expect it to work. Have you been given any idea ? Why has it taken them so long to get your tablets ? Babe xxx

  • Offline in reply to babe
    Hi Babe, Sorry to hear, you have had a bit of side effect from Fulvestrant. It would appear that we are doing this the opposite way round. I have had to have two lots of Fulvestrant to build it up in my system before I can start Palbociclib. I also have an injection in my tummy to strengthen my bones every four weeks. I take it that it's secondary breast cancer that you have. How long have you been diagnosed. Have you had all the hormone treatments. I was on Letrozole for almost six years before it stopped working. I got it in my head that it would work forever, how stupid is that. I was devastated when they told me it had stopped working and the fear came back. They are giving me this combo so that I don't have to have iv chemo again. I am so sorry that you are swollen due to your liver, is it very painful. I hope with all my heart that this combo works for you and your results are good and positive. What hospital are you under. Will be thinking of you . Dawn xxx
  • Offline in reply to Prawn
    Hi, I was diagnosed in 09,I was 34, then diagnosed with secondary in my liver, spine and skull in December 11, been on permant chemo ever since with a three month break to travel. I got diagnosed in march this year with it in my brain, had radiosurgery and so far so good. I have done really well on all six different chemo's they have given me and tolerated them all until they have stopped working and the cancer grows. It's always been my liver that's the problem, because it's totally covered and very swollen. It's got worse since the last chemo stopped working and then I had to wait two weeks before I could start this treatment, I also had the double lots of injections but started the tablets at the same time as my first lot of injections, I also have the bone drug too but I have the old style, given on a drip over half hour. I had tamoxifen when diagnosed in 09, didn't have chemo because they said I didn't need it. Because I am getting worse and worse and not able to eat a lot without being uncomfortable because there isn't enough room, I need this Palbociclib to kick in fast. It's frustrating because I would be ok apart from that, doesn't help that I'm so tiny, I'm only 5ft1 and weight 7stone. I am under clatterbridge, what about you ? Xx
  • Offline in reply to babe

    Hi Babe, you are just a baby, so young I don't know why but I assumed you were older which is very naive I am sorry I was diagnosed in 2008, just by chance, someone was looking out for me that day. Two years running I had been to my GP complaining of pain in the left nipple area. She examined me both times but couldn't feel any lumps or bumps, she told me you don't associate pain with breast cancer and both times sent me away telling me it was hormonal and to take more evening primrose oil. About 18 months later I was due to go for my regular screening and this may sound daft, but as soon as I put my foot on those steps to the mobile unit, I just knew it wasn't going to be good and I was right, got a letter to go to St Georges Hospital because the calcium in my breast had shown changes. I had a mammogram which didn't show anything, but because of the changes they did an ultrasound which revealed a nasty tumour tucked away nicely behind my left nipple. They told me I had breast cancer and everything became fuzzy, I could hear voices but they sounded in the distance. My beautiful surrogate daughter was with me and was listening to what was being said. I had some biopsies and was sent home to wait for the results. I immediately told work I was going to stay with my

    family in Kent to get my head around it. I was a medical secretary at the time to the two lovliest

  • Offline in reply to Prawn
    hi dawn, haven't got all your message through. Can you re send xxx
  • Offline in reply to babe
    Hi Babe, sorry not got back to you before now, I was rambling on a bit too much, re-living the experience, not always a good thing. How are you doing ? Do you have children? I have one son, whom I rarely see and 3 beautiful grandchildren who I met for the first time 3 years ago. They are do to come over next Saturday (fingers crossed). The youngest is 8, then 11 and 13. Sadly I fell out with my son many years ago, being a single mum is not easy. It's a long complicated story, so will leave it there. Just treasure every moment I get to spend with them. Back to story, I will probably repeat myself!!!!! I was 59 when first diagnosed and I am now 67. Right, here goes........after being diagnosed, it was believed that it was still contained within the breast and surgery was planned. Then one night at about 7.30 in the evening I had a telephone call from an Italian sounding man, I thought he was trying to sell me double glazing until he mentioned the words The Royal Marsden, then I listened. He asked me if I was prepared to go on clinical trials, not necessarily to benefit me but for future generation's, of course I said yes, which turned out to be my second lucky break, because I was given a PET scan, which showed the cancer had already spread. I was still given the option of surgery, but as one 'not so nice oncologist, think he was a, can't think of the word der!!!! not yet fully qualified, put it 'No point in mutilating yourself when it's already spread' lovely bedside manner, I don't think, did not have surgery, but even now because of the trials, I can still have surgery if I want. Was put on Letrozole which worked for 59 months, yay, thought it would work forever, put in loads of weight, but didn't care as side affects were minimal and could live a normal life. Had PET scans every 3 months, then came big shock had spread to liver and spine. Tried a couple of different hormone combos, side effects really bad so had chemo for 6 months, got off very light, hardly any side effects, had my head shaved, got a wig which I only wore to two family funerals (and where my son started talking to me again) .One of my aunt's knitted me several little cloche hats with flowers on, which I wore mostly as it was winter time, else I went head Brazilian!!!!, got the usual stares, but just embraced it. Chemo did trick no sign of cancer anywhere, put on Tamoxifen which worked for 7 months, then back it came then put on chemo tablets, which lasted a year and now this combo. Been having PET scans every 3 months throughout the whole time and tummy injections every four weeks for bones, so back again in Tuesday to see if Pabociclib has arrived. To be honest not looking forward to taking it, side affects scare me, so truly value your input. I can't understand why it costs £85,000 per year per patient with such scary side effects. I hope the combo has now kicked in for you and is having good positive results. Have added you to my very long prayer list, thinking of you and sending you hugs xxxxx
  • Offline in reply to Prawn
    Morning Dawn, Ar firstly I just want to say, don't worry about this new drug. It is very well tolerated, I'm on my second cycle of it now and haven't had any side effects, I'm sure you will be fine. Think you have to remain as active as you can, that's the key to avoid some of the horrible side effects that can happen. I really can't understand why they are taking so long getting the tablets for you. I was accepted straight away but had to be off chemo for two weeks before having it. I had two weeks off chemo then got tablets and injections straight away and started them together then a week into it I had double injections like you. Last week I got the bum injections and the second cycle of tablets , I go back on the 3rd Jan. My oncologist did say I was lucky to get on this new drug as it's now been pulled from the NHS to those who are new applying for it. They can't take it from us because we are already on it, even though your still waiting for it to arrive. Have they said what the delay is ? Ar I hope you can get a proper relationship back with your son, that can't be easy for you. I haven't got kids of my own but have a step daughter who is 12. I didn't want kids until I met my hubby, I decided I had met the right person so wanted a baby but then got re-diagnosed. My oncologist said she would have thought the drug combo would start to kick in after this next cycle, I'm so hoping it works because I'm very uncomfortable, I look pregnant with the swelling. I'm very positive and keep saying it is going to work. When are you back at the hospital ? Keep your chin up and don't worry about the treatment you will be fine
  • Offline in reply to babe

    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

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  • Offline in reply to Prawn

    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 ???

  • Offline in reply to squids

    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

  • Offline in reply to squids

    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.?

     

  • Offline in reply to velveteen

    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. 

  • Offline in reply to skateski

    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

  • Offline in reply to Zaccycat

    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 . . 

  • Offline in reply to Zaccycat

    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

     

  • Offline in reply to paddocks

    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

  • Offline in reply to 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

  • Offline in reply to Lizee

    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

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