Breast Cancer Now Forum

Totally understand your dilemma what if you speak to breast care nurse at hospital and explain you have holiday booked and could appt be before you go if possible or if not after you come back as Jill says 2 weeks isn't going to make big difference.  I would say enjoy holiday and deal with things when you are back. Liz x ... View more

Yeah so do I I use factor 50 + kids but still get a red rash at times you can get total sun block 75 I think it is which I really should get. I'm in Scotland and still get it the sun is so strong at times even here 😆 .  I think its mentioned in side effects I'll check . Liz x I'm 4 years in and stable so it's worth it I also always wear cap in sun as hair thin on treatment.  ... View more

Hi stargate totally agree your mum has been treated so badly I'm 4 years on with secondaries in both lungs pelvis and base of spine on letrosole and palbociclib plus bone strengthener zometa . You can phone bcn on this forum for support. That nurse was so wrong about bone strengthener I was told all sorts of conflicting things . I have only had ct scans for mets and all stable. As the others said ask for second opinion if you aren't happy . I'm 67 and lots of people on here living so much longer with sbc. I have been told when palbo stops working other options available orally or monthly injection.  The treatment is nothing as bad as chemo was for primary in respect of side effects. Hope you get some decent support and treatment an for your mum. Sending love and positive thoughts Liz x ... View more

Think the planned breaks are a great idea . I was still initially working but went off b4 pandemic in March now happily retired . I would say ask about lansoprazole ASAP as I did without for first month snd struggled with nausea it also seems to help with diarrhoea.  I try to eat health smaller amounts and siestas for fatigue also take naproxen for joint pain walking is also good for bone mets I have info from american oncologist will look for link. Heat pads also good I had bad hip pain and I used them supermarkets and pharmacy sell them . Sending love liz x ... View more

Hi Judith I've been on palbo and letrozole since May 2018 for mets in pelvis lung and base of spine all mets stable on treatment was on 125mgs then 100now on 75 mgsfor past year which is keeping this stable reduced dose due to low neutrophils.  Side effects have been manageable initially nausea diarrhoea but advice to take lansoprazole which helps plus drink plenty water . I take my dose at night. Sending you love hugs and positive vibes Liz 💗 x ... View more

I have been on palbociclib for 4 years and had several gaps of a week due to low neutrophils which have been OK after an extra week off . Apparently neutrophils can pick up on a daily basis. My scans stable I have secondaries in lung base of spine and pelvis. Hope you get over your covid ok it hopefully won't be so bad due to vaccines.  Take care Liz x ... View more

Aw what conflicting advice for you . I'm 4years into treatment on ibrance for bone and lung mets all stable.  Have had a few episodes of neutropenia down as low as 0.75 but never needed hospital admission never had temperature or infection at that time . Was on 125 mg dose then 100 now on 75mgs I rance for past 9 months and scans stable. Side effects are ok a bit of gastric upset but on lansoprazole which helps. If neutrophils are low I just miss a week of treatment which I had done on maybe 5 or 6 times in 4 years. I go to shops hospital appts travel on bus train obviously take care but haven't had covid.  I walk most days helps body and mind.  Neutrophils can change on a daily basis. Sending g you love hugs and positive vibes. Liz x ... View more

Hi I'm on palbo and letrosole have been for 3 years and 8 months initially on 125 mgs now 75mgs for past 9 months or so . Did have fatigue and nausea and gastric upset but take lansoprazole for that was taking it regularly initially but now just occasionally and try to balance exercise and rest . Last scan in Nov all mets stable have secondaries in lung base of spine and pelvis.  Hope things improve I find the tiredness nausea comes and goes so good days are appreciated and rest when tired.  Love hugs and siestas Liz xx .  ... View more

Hi Theresa.  Yeah Xmas was good much better than 2 years ago when I had bad hip/ pelvic pain . I'm on 75 mgs and have been for about 9 months had scan results on 1st Dec still all stable  . My tumour markers went from 60 to 28 getting them checked again feb March and now getting scans 6 monthly as they have been stable. Good scan results was the best Xmas present 🎁 👌 .  Hope you had a nice Xmas too. Love hugs and positive vibes Liz ... View more

Bless you totally understand its the uncertainty and waiting been there 3 and a half years ago in not triple neg but lots on here who are plus bcn available to speak to . I'm oestrogen pos secondaries and been on successful treatment for over 3 and a half years for mets in lungs base if spine and pelvis.  New treatments all the time you will honestly feel more able to cope once treatment plan is in place but it isn't easy. Let your family support you and try to focus on getting the right treatment to treat this horrible secondary diagnosis. I focus on the fact sbc is considered treatable although not curable.  I focus on treatable part. Sending you love hugs and positive vibes.Liz xx ... View more

It can be a lonely and isolated journey more so with covid19 in the mix. I'm on palbo and letrosole for past 3year and a half years plus with secondaries in lungs pelvis and base of spine 6 tumours in total that were all more than 1cm now all smaller or stable just had scan results and now getting 6 monthly scans in place of 3 monthly and tumour markers in between. I did a few online zoom chats on here with fellow secondary people which was helpful. I have never been offered macmillan support or any other therapies but have eventually processed it and realise this is a treatable condition although not curable so focus on the treatable part. Was so happy to have stable results last week as 2years ago had horrible pelvic and back pain which is now under control so feel so much more positive.  With the inevitable ups and downs.  Sending love hugs and positive vibes Liz ... View more

https://www.google.com/search?client=ms-android-samsung-gj-rev1&q=Everolimus+exemestane+breast+cancer&sa=X&ved=2ahUKEwjxyuWFmLn0AhWZQvEDHQTzDe0Q1QJ6BAgeEAE&biw=412&bih=828&dpr=1.75  ... View more

Sorry you haven't had any replies I'm lucky enough my mets are stable on palbo and letrozole you should maybe phone one of the bc nurses on forum here they will help a few ladies on here gone on to different treatments successfully one I know is 15 years on in mets after various changes in treatment. I sent a link that says this prevents going onto chemotherapy with some good effect don't analyse it all especially on a Saturday night .If you put exemestane or everolimus in search bar you mind find some threads. You will understandably  be worried I'm awaiting my last scan results and you always think what if its stopped working. Sending love hugs and positive vibes Liz xx ... View more

I am on same dose 75mgs palbo letrosole and zometa for bones been on this for 3 and half years lower dose palbo last 6 months have always had scans 3 to 4 monthly on oncologists regime can understand why you would worry its only yearly for scans I would say question this . LIZ XX ... View more

I'm on palbo and letrosole for 3 and a half years all tumours stable breast lungs base of spine and pelvis . I was told by oncologists that I will stay on it as long as it works no time scale given but get scans 3 to 4 monthly . Liz ... View more

Hi Jacksy sorry you are going through such sickness on chemo what about seasick wristbands amazon or pharmacy sell them you can press plastic disc to put pressure on inner wrist might be worth a try . I was so sick on iv chemo during primary bc despite anti sickness meds. It's understandable youare feeling like giving up but try to focus on how far you have come and the fact it is working. I'm on oral target therapy at moment but fully understand why you are dreading next round and the ongoing nausea . Hopefully the nabilonethat Jill suggests might be an option . Sending you love and positive vibes Liz xx. Glad you got a hug and a talk and movie its perfectly OK to reach a point of feeling overwhelmed at times xx ... View more

Great news so happy for you  👍 . Liz ... View more

Hi beatit and hannah . I had sbc diagnosed in 2018  14 years after primary . My secondaries are in both lungs 2 tumours bigger than 1 cm and smaller ones and base of spine and both sides of pelvis been on palbo and letrosole for 3 and a half years and tumours are all stable. Also on zometa for bones every 3 months . Sending you love and positive vibes Liz xx ... View more

Defo not a wimp it's enough to have sbc without the pulmonary embolism . I'm on palbo and letrosole for 3 and half years and its working had a few break of a week off palbo for low neutrophils on lowest dose 75mgs for past 6 plus months and it's still keeping things stable in lung base of spine and pelvis. What about arnica cream for bruising . I felt nauseated when first on palbo take lansoprazole now as suggested by oncology nurses. Small amounts of food little and often take my palbo at night with a snack also drink plenty water. You are doing amazingly love virtual hugs and positive vibes Liz xx 💕 ... View more

Hi Umi I had a few issues initially when starting palbociclib mainly gastric ie with nausea and loose bowels but started taking lanzoprazole 15mgs the oncology dept recommended this and it helped now just take it occasionally. also take palbo at night with small snack find its better for nausea and take letrosole at lunch time its also recommended to drink plenty water. Never had biopsy of and secondary tumours I had all lmph nodes reved at initial diagnosis in 2004 in left axilla as i had 2 nodes affected when I had primary tumour in left breast. Hoping your Mum gets on ok I stared on 125mgs palbo but now on 75mgs due to low neutrophils and this is keeping things stable been on this dose for over 6 months. Sending love and positive vibes Liz x ... View more