Breast Cancer Care Forum

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

Totally agree with what you are saying I was told my lump was scar tissue from radiotherapy but 5 months later another breast cancer oncologist listened to me and I was told I had secondaries in chest spine and pelvis. Didnt feel like jumping about in pink tutus bras or dyeing hair pink. Also cant dye my hair on palbociclib as it thins and anyone on chemo shouldnt be dyeing hair or can have no hair (been there) so it is a bit insensitive I think. Also been told I dont qualify for PIP with ds 1500 form so have applied for it anyway so will see. Think it is unfair we should be forced to work fair enough if some people feel they can bur incurable cancer is tough physically and emotionally . Sending love and hugs Liz xoxo ... View more

Hi rach and all others going through this. I left work at nhs one week before initial diagnosis in 2004 as i had carer commitments for my son cashed in pension previously to fund extension on house as he had an accident as a passenger in car which left him with ABI also lost my Mum In accident so had a bit of a coping crisis. Was diagnosed in 2018 with secondaries after initially been told it was scar tissue. 5 months later got correct diagnosis. Am working part time and asked re ds1500 form but gp said that they have been told that is only if you are 6 months to live terminally ill apparently incurable cancer isnt enough!! I have applied for PIP yesterday on my own without form so watch this space. I am off work at present with flu type/ cough etc . have secondaries in chest pelvis and base of spine. So fed up with the "system" Feel free t o msg privately although I will have to work out how too . Love and Hugs Liz xxoo ... View more

Yeah you need to get support from work don't be to hasty to leave they owe you to find hours and role to fit round what you can cope with. People living so much longer withsecondaries get pip ask gp for ds1500 form. I am ex nurse now work or 20 hrs in nursery setting but it's tiring too. My oncologist would give me ds1500 as apparently I'm not at 6 months to live stage but people on this site been given form from go and awarded pip for 2 years initially. I had initial BC in 2004 and secondaries in 2018. On palbociclib and letrizile and zometa for bones. Secondaries in lungs and pelvis and base of spine scan showing things stable. Sending u love and hugs liz ... View more

been on palbo and letrozole since april 2018 minimal side effects on lansoprazole for nausea stomach discomfort since may 2018 apart from that  slight fatigue and thinning hair but still working 20 hrs . TAke astragalus for help with immunity as I read on American site it had helped some people as Palbo has been available in  America and Canada for over 5 years also take turmeric the one with circumin and black pepper both available at health shops. Only missed 2 treatments due to low neutrophils this only delayed treatment by a week. 3 monthly scan show this stable have secondaries in lung pelvis and base of spine also tumour in breast has shrunk too. Hoping you get on okay with your treatment . love and hugs LIZ X ... View more

I have SBC in both lungs pelvis and spine been on palbociclib since April 2018 4 of 6 tumours smaller and things stable . Hope you get your breathing problems sorted I am fortunate not to have any breathing probs at moment xx sending you love and hugs and hoping you get treatment that is going to be effective. X know someone who was in this situation re breathing who is still here 15 years on with secondaries so there is hope and new treatments available xx ... View more

Initially I was told I would have mastectomy only had lumpectomy 14 years ago plus all lymph nodes removed the treatment has shrunk the tumour in my breast and as was mentioned they feel surgery can lead to cancer cells being dsiturbed if it is not an encapsulated tumour although I did read a newspaper article saying treatment was more effective if lump was removed maybe worth asking . I am 19 months on and lump is definitely smaller . liz xx ... View more

I have been on letrozole and palbociclib since secondary diagnosis since april 2018 have secondaries in lungs spine and pelvis plus reoccurance in same breast treatment is going well scan 3 monthly showing things stable. Hope you get on okay at appt Liz xx ... View more

Hi I am on letrezole and palbociclib plus was on denosumab but now bk to zometa as it is cheaper! Been on treatment since April 2018 3 monthly scans shown some reduction in secondaries and all tumours stable. Secondaries in both lungs base of spine and pelvis. Hope you all get on ok with treatments liz ... View more

hi I have been on Palbociclib which is similar initially had a bit of nausea tummy discomfort but started on Lansoprasole 15 mgs after second month and been okay since then now been on letrosole and palbo for a year which scans show secondaries in lungs base of spine and pelvis stable 4 of 6 tumours smaller. Hope you get on okay with abemaciclib Liz ... View more

hi I am in similar situation secondaries in lungs and pelvis and base of spine13 years after initial breast cancer. Initially was told it wasnt secondaries but 5 months later was found to be after mammogram. Been on letrozole and palbociclib for over a year which scans show things stable. You are right the forum shows people living so much longer with secondaries. Keep well and strong Liz ... View more

Great message and great attitude bad ass mom 2019 I am  2004 bc then 2018 secondaries mets in lungs pelvis and spine . This is treatable not curable and as u say people living with mets for years . Lets fightt this together there is new treatments ongoing  ... View more

so sorry to hear you are in this situation. There are some articles which may be of help https://www.cancerresearchuk.org/about-cancer/cancer-chat/thread/terminal-cancer-cannabis-oil there are a couple of link at bottom of article too. I would say try anything that could alleviate symptoms sending you love Liz x   ... View more