Breast Cancer Now Forum

Hi Michy . I am 3 years plus into secondary diagnosis and stable on oral meds palbociclib letrozole and zometa infusion every 3 months as bone strengthener. Its horrible waiting to start treatment so empathise.  I had initial wait of 5 months then 2 months before starting treatment . Have secondaries in lungs pelvis and base of spine these are all stable and in some smaller tumours. Once you have a treatment plan you will feel more able to cope and focus on it being treatable even if it's not curable . Sending love and hugs Liz xx. New treatments and studies means more effective outcomes xx ... View more

Aw bless you bagheera I was the same when initially diagnosed I had initial bc in 2004 then secondaries in 2018. Its so scary when you are first told I had a 5 month wait before being diagnosed as was first told it was scar tissue then pushed to get seen again and found to have secondaries. I look at it as treatable but not curable cancer but focus on the treatable part . I take my palbo at night it did make me feel a bit nauseous at first and a bit of loose bowels took lansoprazole for gastric symptoms which helped got it from hospital.  The palbo and letrosole are not too bad re side effects and if they are working it's defo worth it . Private message or post here if you need any help reassurance glad to be of support xx .love and hugs Liz x ... View more

Hi I am 3 years into treatment on letrosole and palbociclib have scans every 3 to 4months and this is keeping things stable have secondaries in lungs base of spine and pelvis all tumours stable and cancer tumour markers checked 3 monthly show they are within normal range. A few people on here seen to have ribociclib toxicity in liver. My neutrophils have been below 1 on a few occasions but treatment just delayed for a week and also dose reduced from 125 mgs to 100mgs now on 75mgs which is keeping  things stable u also was on denusamab but now on zometa for bones 3 monthly infusion which costs less apparently. Good luck with treatment  love and hugs Liz x. Haven't had surgery on local reoccurrence tumour there us debate about the effectiveness of this my oncologist said if it increased or was causing pain they might consider it but it isn't any larger. Xx   ... View more

What a horrible experience for you I know what you mean about the cold way that oncologists can be but you have been treated in a terrible and unprofessional way  I am 3 years in on palbo letrozole and zometa bone strengthener . Initial I was told my secondary lump was scar tissue but after 5 months of asking to be referred again was found to have secondaries In both lungs base of spine and pelvis. Scans 3 to 4 monthly show things stable but do get periods of really bad hip pain affecting mobility. Initially I felt as if I was in a no hope situation and the way it was approached made me feel untreatable unimportant and just another number. No-one should feel like this you will get strength and hope pain relief and once treatment kicks in you will feel more in control Yeah we are not curable but are treatable and are important.xx sending you love and hugs Liz xx ... View more

I'm 3 years into treatment on palbiciclib and letrosole which is keeping things stable have scans 3 to 4 monthly. I did work pt but retired in oct. Have secondaries in hips base of spine and lungs do get  pain a9nd flair ups so it must be hard doing physical stuff. You should apply for pip as you can still work but have that extra support. I got mine after 3 to 4 month wait but its backdated from when you first apply you can do it all online.. I would appeal against insurance too that is shocking but they seem to be like that I was refused a claim when I had primary bc as apparently it wasn't a critical illness although I had surgery and a year of iv chemo and radiotherapy..Hope this helps Liz ... View more

I am just 3 years in and scans stable there are several on here been on it longer and I was told as long as ots keeping things stable I will stay on it . Liz x ... View more

Aw you are welcome its a nightmare to get your head around it all and at the beginning I was all over the place. Once you get your treatment plan you are right it will give you a sense of direction and then you have covid in the mix too. Someone on here said we are living with sbc not dying from it (hopefully). Its hard to deal with all the terminology and scenarios but good to know we are not alone in this fight xx Liz ... View more

I am 3 years into treatment for secondary breast cancer in lungs base of spine and pelvis and all tumours stable on palbociclib and letrosole and bone strengthener infusion every 3 months. Plus scans 3 to4 monthly. Initial breast cancer 13 years ago. New treatments and although its not curable it is treatable. Sending you newly diagnosed love strength and positive thoughts. Liz ... View more

I had denosumab initially but changed back to zometa as it costs less and apparently is just as effective. Both give pain and can give flu like symptoms I was advised to take paracetamol but I did some research and some people were taking anti histamine 2days before and on day of infusion I do this and it seems to help just any over the counter non drowsy anti histamine like loratadine or ceterizine. Might be worth trying anything is worth a try to prevent pain/side effects I say.. Liz x  ... View more

hi I am on palbociclib and zometa as the bone strengthener since May2018 a few times had low neutrophils but only delayed by a week. I had one blood results were red blood cells were enlarged macrocytosis which means the red blood cells are larger than normal which means you dont have enough normal sized functoning red cells . The cause of this can be many factors including side effects of palbociclib and even some antibiotics and other means along with cancer. It can be due to low b12 and folate so i did some research and take 1000mg B12 and 400mg folic acid just an idea . I had b12 checked and level was okay but decided to take this supplement anyway and had no more bloods with large red blood cells for the past 6 months.  Hope this is useful also diet changes can help. Liz. https://www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/causes/   ... View more

So sad to hear this news. As previously said Nicky was a great source of comfort support and was so knowledgable.  Sending loving thoughts to her family and glad they were with her and that she was free from pain and received good care. An inspirational lady R.I.P. ... View more

Like it says it's okay not to be okay. These are particularly hard times with covid in the mix . We can't always be positive I too am Zoom phobic not my thing as I feel the same thin hair with or without hairdressers ! You feel on show and I dont feel confident with that . No easy answer but get support here or anywhere else that you think helps it us isolating at best of times and sad you have lost friends. I am the same feel guilty I'm doing ok but not making the most but restrictions are here and also you are allowed to have days were you just get through the day . Sending love and hugs Liz x ... View more

Totally understand how you are feeling I'm 2and a half years into treatment for secondaries after 14 years in remission on palbociclib and letrozole have secondaries in lungs spine and pelvis things stable on last scan last month so treatment working to keep things stable. Yeah its not curable but is treatable and it takes time to get your head round it all but especially scary with covid in mix . Stay as positive as you can and hopefully get started on treatment asap . Stay safe Liz ... View more

I had same issue with eyes sore and streaming last year after about 3months on treatment phoned g.p but was told to go to optician had gor drops from boots 2days previously which made it worse. Optician said like previous post some eye drops with preservative can make it worse got vit A eye cream on her recommendation preservative free it helped. Mentioned it to oncologist who said dry eyes is a little known side effect but I find it's more than dry eyes its painful too bought more its about £8  online hycosan eye cream . On palbo and letrosole which is working been on it for 2and a half years and scan shows things stable in lungs spine and pelvis so eyes are sore at times but worth it . Liz ... View more

Amazing news so happy for you. As you say gives us all a bit of hope and good news in the midst of all the negative covid stuff . Stay safe everyone x   ... View more

 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