Breast Cancer Now Forum

I think it pretty common to need extra time to rebuild neutrophils on palbociclib; there are some women on three weeks on two weeks off as standard. I have already dropped to lowest dose ( cycle eleven) and missed a couple of weeks ago again! ... View more

Hi Barbamama, sorry you have joined our exclusive club! I am on pablociclib and letrozole, so similar drugs to you, and have had few problems with side effects. My oncologist said that for most people the SE for palbo are on paper. Letrozole can be more of an issue if you are just hitting menopause, but you would have faced that sooner or later anyway. I hope you find it manageable. mary ... View more

I am a year in with multiple liver mets. I also have bone and chest wall tumours. My liver was misbehaving last year, but paclitaxel sorted that. I have been on targeted therapy for ten months and feeling ok with tumours shrinkage.  as Jan says, we all have different needs but there are lots of options now. Your sister in law needs support but also needs to listen to what the oncs have to offer. Good luck🤞🏻 ... View more

Hi Louise, I am doing pretty well and feeling so much better than twelve months ago. I have just started palbo cycle 10; had to miss a week because of low neutrophils even though I am now on lowest dose. TM have gradually gone down , and now at 1126. Interesting they went up a bit last month after my fifth vaccination and consultant was not surprised. Obviously a number of factors affect them. Good luck with your treatment; if you are like me you will find palbo easy after paclitaxel, but we are all different!🤞🏻 ... View more

Raised liver enzymes are a side effect of Palbociclib. I think it depends how high they are. Mine are often around 2 times normal, but I think the onc gets concerned when they are 4/5 times normal.  ... View more

Hi Lesley, I was on exemestane for eight years after my primary diagnosis. I would have kept going if it can been clinically approved but I had already had extensions beyond normal treatment. I wasn’t really aware of SE; possibly some loose bowels at times and hot flashes at night. I was discharged in 2016 but discovered lots of mets last year. I can’t help but suspect that everything started growing when the exemestane stopped!  ... View more

Hi Ej.  glad that you are finding palbociclib tolerable and feeling almost normal! I feel the same after eight cycles, not least because I had chemo last year before starting palbo.  I think it is fair to say that scanxiety is something we all share! This is particularly true if treatment seems to be going well I think, because SBC is so sneaky we are scared to feel better.  I try ( usually unsuccessfully 😆) not to worry as it will not change the outcome.  🤞🏻🤞🏻🤞🏻that it is working for you ( and me😊) mary ... View more

Dear Buster, I do get where you are coming from on this. As women we spend our lives being told how we should look and all of us are touched by this! I never had a reconstruction after mastectomy and in some ways that was easier, just using a prosthesis. But last year my cancer returned and I started chemo, lost all my hair and loads of weight. I felt and looked grim and frankly thought I must be repulsive! My husband was scared to hurt me and so was physically reserved too. But the situation has changed with time; I feel much better as my treatment is working, hair is back and normal life has resumed! If I were you I would continue to investigate the possibility of a reconstruction, but perhaps also be a bit kinder to yourself! SBC is hard to deal with, but we are expected just to get on with it. It might be worth contacting MacMillan for counselling support so you can work through some of your feelings too. Mary ... View more

Thanks Liz; I am from the West of Scotland but now live in Sunny Sussex. I don’t remember sun growing up in Balloch😆 ... View more

Hi Sharon, I think scan frequency can depend on the nature of your mets and how stable things are. I have been on three monthly scans for my first year, but they have actually been more like 4/5 monthly because of backlog here. My onc has said I might go onto four monthly if things are stable despite having multiple liver and bone mets! I would be ok with that as I have monthly bloods which provide information too.  mary ... View more

I think the side effects for that group of drugs tend to be ‘on paper’ my oncologist said! I get tired on the week off and have some indigestion but otherwise ok. I get all my tests at hospital and like that; our local Onco ward is really supportive! I guess it varies from area to area. ... View more

Hi Christine, I am on pablociclib/ letrozole/ denosumab; not quite the same but the same family of meds. I have found it really manageable and live pretty normally tbh. It has also shrunk my mets, which chemo didn’t do!  This is a relatively quiet forum, so I thought it was better to have similar experience rather than no reply! mary ... View more

Thanks Joycem. It is always good to know that what you are going through is normal (😱) for that treatment! I get your point about the week coming at the wrong time; I thought I might need antibiotics last week which would probably have put off treatment for a week and ruin my plans. Fortunately I didn’t, so holiday this week with grandson was on week one, my best! ... View more

Generally I have found this combination really good with few SE, but I do suffer a bit during the week off palbo! I get lightheaded and can have the runs, particularly on days 4/5. Bit weird as the drug level must have dropped by this time. Nothing terrible, but I have to plan ahead to avoid comments at this point. On chemo I gradually felt better during the week off rather than worse; is this just me or do other ladies find this too?  mary ... View more

Hi Cheryl sorry to hear your news! I am a year on from the same diagnosis, although I also have multiple bone mets too. Initially I was put on paclitaxel as my liver enzymes were high; it stabilised things and I have been on pablociclib and letrozole for eight months now. This has reduced the tumours a bit and I have been able to live a pretty normal life, but of course everyone responds differently! I feel much better than I did before treatment started for sure!  Good luck with your treatment plan; secondary breast cancer may not be curable, but it is treatable.  mary ... View more

Hi Karen, looking at your post history has really cheered me up as I had been getting despondent about my liver mets! I am on pablociclib at the moment; did your mets actually shrink on this or just stabilise? For three years! I guess you also must have changed track if you are now on trodelvy!  thanks for cheering me up this morning! mary ... View more

That makes sense! The UK approach seems very different from the US. Here the oncs will do what they can to control the disease at Stage 4 but seem to accept that more aggressive treatment is pointless/ too expensive.  if you have looked on the breast cancer.org forum, the women on there seem to have everything thrown at them! Surgery, radiotherapy and novel treatments abound, but presumably only while the insurance will pay. Having said that, US survival is better than the UK. Actually most of Europe is better too😞  Good luck with your treatment  mary ... View more

Thanks Bernard! ... View more