metastatic breast cancer

Hi and a warm welcome to the Online Community. I have a different cancer to you but just dropped by and noticed you've not had any replies just yet but I'm sure someone will reply and share experiences and give you some tips soon.

When you have a minute, it would be helpful if you could pop something about your  journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. (It also means that you don't have to keep repeating yourself.) To do this click on your username and then select 'Profile'. You can update it at any time.

It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear. Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available . You can ask a nurse about medications in our Ask an Expert section, but do allow two working days for replies from our expert team.

Sending you welcoming hugs, B xx 

hi Brilliant news about how you are responding to treatment? I wondered if you’d be keen to share your story on the positive news thread? There often lots of newly diagnosed mets breast cancer patients who would draw comfort from your experience. 

sorry I don’t have any tips on the incontinence, except for the obvious of reducing your liquid intakes before bed time. Have you tried asking a nurse on here, they might be able to help. 

Hi Zimbali

I was diagnosed with mets in my liver November 2020, so still quite recent. It is reassuring to read your post that you are still well 4 years on from diagnosis - thank you. 

I was also very interested to read that you had a problem with your neutrofils, I also have had the same problem and had to have a 3 week break from the Palbociclib, and my dose was lowered again to 75mg. I am a bit worried that this may not work as well, and worried about what may have happened in the 3 weeks I was off the Palbociclib. I was wondering how your low neutrofils had impacted on you? 

 I am still feeling quite positive though and managing to do most things I want to. Xx

Thanks to the kind people who have welcomed me here, and specifically hi Zeds. I was put on 125 mg Palbociclib at first, but my neutrophils just nose-dived and I was changed to 100 mg.  This has mostly been OK, I was told they needed to register at 1.00 to be on the treatment, and they've stayed roughly about that, down to .8 now and then.  I haven't noticed any impact infection-wise, though I've been lucky this year, it's been easy to avoid anything.  Occasionally I've had a 3-week break from palbo like you, but am assured that that's not a problem, it will still be working in my body while my neutrophils recover.  So don't worry too much about that.

I did worry that going down would reduce its efficacy, but as ever it's a risk/benefits balance, and whatever keeps you healthy is the right dose for you, whatever that is.  I assume you're having regular blood tests.  My chief reassurances are: a cancer centre where the doctors and nurses seem very much on the ball and are happy to discuss any queries I have; Dr Google, even though I have to sort out the sensible stuff; unashamedly leaning on family and friends. I'm determined to stay as positive as possible and to keep my usual life going, and this mostly works except that my stamina is less than it was.  From your last sentence you're doing the same. 

I can honestly say that I feel much better now than I did 4 years ago when I was diagnosed, thanks to the treatment.  Hope you'll be able to say the same.  Good luck!

Hi Zimbali

Thank you so much for your reply, it is very reassuring to hear other people's stories that are similar to your own. I do have a blood test every month and will be due another one in about 10 days, so keeping everything crossed that they won't be too low to be able to continue with the treatment. My neutrophils have been .50 and .48, I also, have been told that they need to be 1 or above before the treatment can continue. Thank you for the reassurance about having to have a 3-week break last time.

I am staying very positive and still living my life, although can't wait to be out of lockdown and mix more with my family and maybe have some holidays as you say my stamina levels are also definitely lower, but am managing that. I do also try to eat really well and have stopped having dairy (also to help with nausea), although would eat exactly what I want on special occasions - do you follow any special diets? Good luck to you as well and may we stay well for as long as possible. xx

Hi Zeds

OOh, magic word holidays.  I just want to sit in the sun without a cold wind blowing!  I too try to eat well, as I have done since becoming vegetarian many years ago, and agree with you in being sensible most of the time but enjoying special occasions.  I do have quite a lot of dairy, lots of veg, fruit and nuts, very little alcohol.  Google research on boosting neutrophils and calcium can be frustrating; I found a study that said dark chocolate boosts neutrophils, so I have half a bar for breakfast before each blood test, but couldn't tell you whether it really works!  Then I found that chocolate contains oxalate and hinders absorption of calcium, which is unfortunate, so the chocolate is only on blood test days.  Too many sites contradict each other, I've concluded that green leaves are the only foods that get unqualified approval everywhere, and I don't want to eat too many of those.  Now it's spring I can add dandelions and nettles to my usual greens by putting them in soup.  Sorry not to be more helpful, the dietary info isn't as clear cut as I'd like, I'm just experimenting. xx