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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

    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

  • Offline in reply to babe

    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

  • Offline in reply to Prawn
    o that's great news I'm so glad u have the tablets. I take mine after a snack about 8-9pm because I read some forums that all said night time was best as u sleep through some of side effects. What do u mean when u say they can help u in the future ? Sounds great but not really understanding. I'm no more comfortable, I'm thinking it's getting worse, my liver bloods were not good today either so might try see oncologist next Tuesday xxx
  • Offline in reply to babe
    Hi Babe how are you doing, I hope by now that the combo has kicked in well and truly for you and that your liver is less swollen and painful. Have been thinking about you over the Christmas holiday. Did you go to see your oncologist and what did he say? This thing with regard to the gene. Having obtained my original biopsy of 8 years ago with my permission for research, I was told that it would not be beneficial to me personally, but could help in the future for other people. However whilst testing it with recent bloods, my DNA has changed and they have found this specific B gene that now makes up my DNA. I think they were as surprised to find it as was I and so quickly. Beyond being told that it could be of benefit to me in the future, I know no more. I didn't ask as was grateful for new treatment. However last Thursday I did develop Bells Palsy on the right side if my face haha. Been taking meds for that, but so far no change. Eating and drinking over the Christmas period was interesting to say the least. Need a bib!!!!!. Well tablet time is calling. I take mine half way through breakfast, which is always porridge with blueberries. It says to take with (preferably a meal) not after food so I always read that as in between the meal. Please let me know how you are getting on, love Dawn x
  • Offline in reply to Prawn
    Happy Christmas Dawn, o no I'm sorry to hear this. What's caused it ? Hope you recover from it quickly. We don't know still if this new drug is working yet, they said after this second cycle it should of kicked in. I'm guessing time will tell, hoping I don't get any worse. I'm no worse than last week but so so uncomfortable with the swelling, can't really eat much as no room the liver is that big, I look about 6-7 months pregnant. Oncologist did ultrasound last week because I wanted to check if some of it was fluid, in which case they could drain to make me more comfortable, however no fluid was found, it's all liver, hence why I can't eat much throughout the day because no room. I'm hungry too so it's very annoying ha ha , I just want to eat everything. Anyway I'm not letting it spoil my time and remaining positive, it is going to prevent me from getting any worse. It's sounds very interesting and beneficial to you for future then this gene discovery, I'm pleased. Let me know how you get on, I have been thinking of you but didn't want to bother you over the festive days. Big hug Dawn xxx
  • Offline in reply to babe

    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

     

  • Offline in reply to Prawn

    Haha you are funny. You have a fab day xxx

  • Offline in reply to babe

    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

  • 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

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