Hi ladies, had a really **bleep**e week.. and been putting this message off. Not suee how to post this to a whole group??
Was at my routine Lympodema Clinic appt and 3rd Zolondronic infusion week last Thursday and at the question stage it came up that my right foot has significantly increased pins and needles and numb toes. Crux of it they did a spinal MRI that showed significant changes to my cervical cortex. This was followed up with a brain MRI and a CT body scan. Body scan was clear but brain scan showed several small lesions and one at 13mm, so Im afraid not good news, at 50 and about to be a nanny have months without treatment and with we dont know. I have secondary breast cancer. (Mastasateses) Not curable but hopefully manageable to a degree. Scans will be looked at by Neuro team in Plymouth next Thursday. Have talked to Sammi and will see Kaya and Kirsty on Sunday in Woking to tll them this bloody deveststing news. On a positive I am considering moving back to Woking to be closer to the girls and friends and I would really like to throw a celebration party that I can be at rather than a funeral. Ive registered weeks ago to donate my body to medical science so I feel a celebration of life is a poitive thing to plan. Trisha
Please dont post anything on FB need speak with grls first xx
Hi I am on this drug combo and so far so good.
Yes, the Letrozole does cause some joint pain but keep well hydrated.
When you take the Ribociclib, definitely take it with food and take your time.
Thankfully my WBC have been pretty stable. Minimal diarrhoea, more like soft stool.
I am also on calcichew and monthly Zometa.
I was diagnosed stage 4 from the beginning in March 2018.
ER+ mets in hip and sacrum.
Hi Annie thanks for reply , am on accord , it’s ok , guess it’s a small price to pay if it’s helping me .x
Hannah, sorry I didn’t pick this up earlier. I’m on Teva, which is proving difficult to get. My pharmacist had to phone around the country last month to get it. I think it’s made in Spain....Brexit issues already, I wonder? I’m ok on Accord but do get trigger finger. Swimming and Taichi help me with the joints. X
Hi Anniej can you tell me brand of letrozole you take .I suffer with joint aches and pains , Am so pleased for you , that combination of drugs working well for you
Been on Letrozole and Palbo for 18 months as part of a trial. I found Palbo extremely difficult to tolerate as my neutrophils kept crashing. However, my lovely Onco has persevered, jiggling doses and timings. I am now on 75 mcgs, on a 2 weeks on 2 off regime and it is holding my four lung tumours stable. Reductions showed on first ct scan, and no growth at all on following two scans. According to my Oncologist there is nothing to be done to help the neutrophils or they would have given me it. At one point I was back on GSF injections to stimulate the bone marrow to produce neuts as I was seriously unwell. However, my body is now happily coping with the meds, although I am careful with my brand of Letrozole to avoid aches and pains. Just go for it. Good luck. X
you are welcome I found this out from america/canada website where palbociclib has been around for 6 years approx I have been taking Astragalus since may last year feel it is of benefit and dont have side effects from it,Holland and Barrett or online Amazon. Oncologists and hospital seem not to give any validation to herbal supplements but as an ex nurse I feel we should be able to make our own choices on this based on info available from other patients/research. I was initially going to try echinicea but info showed it can have opposite effect on white cells if used for more than 6 weeks. Hope info is helpful
Thanks for the information liz, very helpful. I hadn’t realised you could help the low white cell count. Hope you’re enjoying the Easter break.
I am on letrozole and palbociclib for secondaries in lungs and bones been on treatment for almost a year scans show 4 of 6 tumours smaller things stable had inital treatment 14 years ago. Minimal side effects on oral treatment take astragalus and turmeric to help with white cell count .liz
go to forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Kisqali-ribociclib/m-p/1203481#M75971
After fifteen years clear from breast cancer, it has decided to revisit in my lungs and pelvic bone. Consultant is starting me with ribociclib and letrolole, can find plenty of clinical reviews but struggling to find reviews from people who are going through treatment. Anyone able to help please