Breast Cancer Now Forum

 there is another post on here re sore feet I am on palbociclib and letrozole have cracked skin on heels and peeling or hard skin plus nails breaking I got Flexitol for feet from boots . Others have said Aveeno cream helps and others say something called Udder cream I think. I was told dark nail polish is good for nail strengthening but never tried thIS. Idid try ckear nail strenghtener. If you look on post it is listed as Sore Feet you might get some more ideas/help it is in the secondary private group. ... View more

So happy for you about cape working for you. Im doing ok on palbo and letrozole. Shame re massage I think there used to be an issue about massage if you have a cancer diagnosis however I am sure its not a definite no go. I think as Gillyflower says it is an easy get out clause for therapists. I am going to try to find out. I think we deserve it after all we are going through. Hope you enjoyed your break . I am in Scotland too. Take care Liz. found this on this website.      https://breastcancernow.org/about-us/news-personal-stories/massage-after-breast-cancer-diagnosis-it-safe#:~:text=There%20is%20no%20evidence%20that,for%20people%20with%20breast% ... View more

i had nausea and diarrhoea initially on palbociclib I was given Lansoprazole 15mgs which helped been on palbo since may 2018 with good results. Worth discussing with oncologist/BCN as Pawsome says it is a common side effect but Lansoprazole has helped me also I think your body gets used to it more over time. I was on 125mgs but on lower dose of 100mgs due to low counts . If it is an issue that doesnt settle maybe they might reduce dosage but it can be worth it to keep things stable. Take care Liz ... View more

HI i have been on Palbociclib for 2years 4 months had treatment delayed by a week on 3 or 4 occasions due to low neutrophils was on 125mg dose then down to 100mgs for past 5 months some people i know are on 75mgs which also shows to be effective. I have had mouth ulcers too but used Iglu gel which works well and never delayed treatment because of it. I have secondaries in both lungs base of spine and pelvis. Scans every 3 months showing things stable so its working. Also on letrozole and zometa infusion 3 monthly. Sometimes you have to shout to be heard and voice any concerns I always think you should care about yourself enough to want the best possible care its our right. Good luck and stay safe Liz ... View more

Hi Ramade  I remember chatting to you on posts before and just wanted to send you huge love and respect, you are so brave to post and you are showing such strength in your approach to deal with things in a way that you choose.  Although I realise it is a bit of a horrible choice you are faced with. It is important to let family and carers know what you want. I am an ex nurse and nobody wants to face these difficult choices I have told my family my wishes. You are inspirational and have given hope,support and advise to many on this forum. Feel free to msg on here or private message any time. Love and hugs Liz xoxo ... View more

you are welcome sent you info on palbociclib in private msg it marked it as spam here and wouldnt let me post it Liz x ... View more

3. Pharmaceutical form Film-coated tablet (tablet). Verzenios 50 mg film-coated tablets Beige, oval tablet of 5.2 x 9.5 mm, debossed with “Lilly” on one side and “50” on the other. Verzenios 100 mg film-coated tablets White, oval tablet of 6.6 x 12.0 mm, debossed with “Lilly” on one side and “100” on the other. Verzenios 150 mg film-coated tablets Yellow, oval tablet of 7.5 x 13.7 mm, debossed with “Lilly” on one side and “150” on the other.    Found these re sizes on this website https://www.medicines.org.uk/emc/ ... View more

i was on palbo 125mgs which were larger bur i managed ok as not great with swallowing bigger capsules now on 100mgs due to low counts twice they are smaller and much easier to swallow they come in 3 strengths 75mgs 100mgs and 125mgs apparently all doses have been shown to be effective in a lot of cases. know someone who goes to my hospital who is on 75mgs as counts were low They are called hard capsules but the 100mg is quite pliable and measures 2cm long and 1.5 cm circumference they are skinnier than the 125 mgs just got my tape measure out. Dont know about abemiciclib, someone on here said there is going to be a palbociclib tablet so might be worthasking about it. I have been on palbo since past 2 years initially 125mgs then 100mgs for past few months 4 of my 6 tumours have reduced and scan show things are stable. Hope you get sorted out. Love and lockdown vitual hugs Liz x ... View more

so sorry you are in this dilema and as you say scan is so vague on what lesions in liver are and also the fact that they are small. I am on palbococlib since may 2018 so 2 years with now progression to secondaries in both lungs base of spine and pelvis. Initial scan at 3 months showed 4 of 6 tumours smaller. since the I have had scans 3 to 6 monthly which sometimes show ambigous spots which my oncologist is quite dismissive about. Is there no way you can discuss this with your oncologist via her secretary or whoever is standing in for her. I am continuing my treatment throughout this last month counts too low so waited a week for repeat bloods which were ok was on 125mgs now on 100mgs for past 3 months because of 2 low sets of neutrophils being too low. I really hope you get some answers and surely they could restart palbo its not a hard process to get funding so at least you are on treatment. I also know some on the forum have had their palbo stopped for now but I am glad to be continuing despite risk of low immunity. I agree they seem to have jumped to a conclusion re liver lesions and not looked at past scans tell bcn you want answers I asked for referral in august 2017 for increase in lump where initial tumour was and was told it was ok  5months later asked again and secondaries were found you know your own body and often the medical profession dont listen to you as a person ,I am an ex nurse, keep pushing to be listened too. Sending love and virtual hugs xoxo Liz ... View more

this is a horrible time for us all secondaries plus the worry of coronavirus. I have secondaries in lung base of spine and both sides of pelvis diagnosed feb2018. Had acute pain in dec/jan in top of hip and back had oramorph codeine which played havoc with my digestion/bowels. finally got relief from heat patches naproxen hot baths rest and a bit of physio (which has stopped due to virus), Physio recommended spiky massage balls med size i got pk of 3 on Amazon. Just a few ideas that might help also sending you love and hugs tomorrow is another day and hopefully a better one. Also what about a meditation/relaxation lots on you tube my daughter keeps me up to date in what to try.  Liz ... View more

I am in scotland getting bloods done at home by nurse or phlebotomist the g.p surgery offered as I am in 12 week isolation as higher risk on palbo and letrozole last bloods were low neutrophils 0.9 although they were up when repeated the following day.  Have to go to hospital for palbo the following day which I am a bit worried about but thanks Nicky for your reassuring message from your experience. It all seems a bit dependant on where we live . There should be hand gel and masks available for us to use . Sending love and hugs to everyone in this uncertain times SBC is worrying enough without adding COVID 19 into the mix. Liz ... View more

I have been on palbociclib since april 2018 initially 125 mgs now 100 mgs for past 3 months as i had 3 low counts. Had bloods mon and counts were too low had repeat bloods next day so was able to start treatment again on wed as scheduled.. Neutrophils can vary on daily basis. I am still working in childcare part time and am just careful re hand washing etc . I know it is worrying times no advice given at hospital on Wed re work and I know another patient was working as normal. Hope you get some helpful advice. I have had good results on palbo 3 monthly scans show things stable have secondaries in lungs pelvis and base of spine. Liz ... View more

Hi completely understand your worries. I'm 2 years into target therapy treatment palbociclib which is similar to ribociclibband letrozole and was on denusomab now in zometa which is similar bone protector but less expensive than denusomab . Had secondary diagnosis in feb2018 with 6 tumours 1 in each lung 1 breast 1 in base of spine and 1 in each side of pelvis scan after 3 months showed 4 of 6 tumours smaller and ongoing scans show things stable. Minimal side effects and managing to be fairly active. Hope treatment goes well for you Liz x   ... View more

Hi Maja and pawsome Been on palbo and letrozole since April 2018 last scan of pelvis 2 weeks ago showing no progression of tumours in spine or pelvis oncologist happy and says I will stay on both as long as things are stable. Have had pain in right hip so was very relieved to find it wasnt due to progression of cancer. I hope you both get on okay with treatment x ... View more

I am on letrezole and palboclib for abour 22 months for sbc., had nausea tummy pain initially then started lanzoprazole 15 mgs which helped . Not sure whether you are on that already and if you are they can increase it up to 30 mgs it worked for me. Liz ... View more

You deserve happiness whatever you are going through or whatever the outcome people are living with secondaries for years now, new treatments all the time. I think your mum is being unreasonable and insensitive probably because she is worried about you but you have to do what is right for you . I'm nearly 2 years with secondaries still working sending you love hope and hugs . Liz ... View more

Agree with all the comments re use of unsurvivors as being inappropriate and upsetting to be part of a campaign that is supposed to lend support and understanding to what SBC feels like. Going through primary is tough but not being listened to or monitored closely is another issue. I don't think it is acceptable that the proffessionals in the field don't look for signs of SBC and don't listen to patients. To add to this already difficult time we now have this unwanted label that was agreed with a small sample group , would be interesting to see if anyone in this supportive forum was involved in the choice of label ! It is distressing for us all just feel it's yet another let down . Liz ... View more

I have been on letrozole and ibrance(palbociclib) since April 2018 for secondaries in lung pelvis and base of spine. Scans 3 monthly show 4 of 6 tumours smaller side effects manageable Take turmeric for joint pain and to help immunity. Only had 2 treatments delayed for a week due to low neutrophils. I'm on 125mgs which is highest dose. This drug has been available in Canada and America for 6 plus years with good results,I checked website. Sending love and know it's hard for u to decide but I am finding it manageable. Love and hugs Liz x   ... View more

Yeah it's treatable but not curable I am 22 months into treatment on palbociclib (oral chemo)and letrozole these have some side effects including low white cells so you have to be careful re infections. I am still working part time personally I think it is important to get support from family and friends. I look on it as living with SB. Scans so far show 4 of 6 secondary tumours smaller. It's good if you can go on holiday and switch off as much as you can. I have secondaries in lungs pelvis and spine. Hope you get your treatment plan sorted for the first month I had bloods weekly now get 3 month's supply of chemo blood at GPS monthly and 3 monthly scans. Take care Liz   ... View more

been on palbo and letrozole since april 2018 only missed second dose and one 3 cycles ago due to low neutrophils my treatment was just delayed by a week and bloods checked again and neutrophils were above 1. Had a bit of nausea initially but went on lansoprazole for gastric systems prescribed by hospital. Also searched American and Canadian websites where palbociclib was available for 6 years some people used Astragalus for help with immunity have been taking this since May 2018 also take turmeric capsules the ones with circumin black pepper which some people recommend. Get my herbal stuff from local shop or Holland and Barret. Dose of palbo 125mgs and 3 monthly scan show shrinking of 4 of 6 tumours things stable for now. Got secondaries in lungs spine and pelvis. I take my palbo at night and letrozole at lunchtime. Hope this helps and relax as much as you can and enjoy,I have been on 5 trips away with my daughter and granddaughter and husband with no problems. Love and hugs Liz xoxo ... View more