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cactusk
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Joined 2 years ago
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Re: Letrozole
Hello Kezzagal I've now been on Letrozole for just over 2 years now. (7 years, 11 months and 8 days to go - not that I"m counting). I had a lumpectomy, radiation and tried Ribociclib but this did not agree with my liver. I was diagnosed Stage 2B, grade 2, ER/PR+ HER2-. The biggest side effect for me is the joint pain. I had 2 years of Zoladex but have just last month ceased this (i was perimenopausal when diagnosed, hence the decision to add ovarian suppression into the mix). My hands & feet are painful most days, especially so when I've been sitting (like driving) for a while. Motion is lotion, so they do feel better once I walk around. my McGrath nurse kept saying 'you need to exercise'. I swim 1km twice a week, lift weights at the gym twice a week, and average 5000 steps per day - so I'm not sure how much more exercise I can do. I've tried green medicine but this didn't have a positive affect so I gave up on this. My med onc has offered me a drug holiday but I'm scared that if I feel a lot better, the thought of having to return to letrozole will be too much. We continue to discuss changing to another AI but I know that Letrozole is the most proven effective for my sub-type, so I'm trying to persevere as long as I possibly can. I know that some people don't have any side effects. Alas, I wish I were that person. The med onc was and is also reluctant to say whether symptoms get better or worse over time, so I can't even tell myself 'this is the worst this will be'. Absolute best of everything to you, x22Views1like2CommentsGiredestrant - SERD
Hello there, Reading the news coming out of the San Ontonio Breast Cancer Symposium this year (happening right now) and there is a very positive, yet early, study on a new SERD on Early stage BC in the Lidera trial. Does anyone know about this or is part of the trial? It seems that there was recruitment in Victoria? Keen to hear.Re: Oncotype DX and Ribociclib
Hi Sonder77 Sounds like we have a very similar path - at least at this point. I too was recommended the Oncotype test - which after much discussion with my med onc and BC nurse, decided to go ahead with. I was very lucky that the result was strong - chemo was not going to benefit me enough at that stage. I was able to access Ribociclib on an early access program through my medical oncologist - as an early BC patient - not with mets. Double check with your oncology team - I believe that it was very recently listed as on the PBS for early patients at high risk of recurrence. I was on Ribociclib for 5 months, but sustained a significant liver injury. It's a known but uncommon side effect. I became very unwell - livers are indeed important things. I can no longer take this - but my med onc is not sure if the other CDK4/6 inhibitors would have the same side effect. Absolute best wishes - i hope you can find a way to try this medication on PBS. cactuskelly79Views1like0CommentsRe: Zoladex
Hi mystic_marzipan I've been on zoladex now for 16 months. I've not experienced the symptoms you describe - but I"m also on Letrozole, Zometa and for 5 months, was on Ribociclib. It's hard to know which drug causes which side effect - but I"ve been one of the unlucky ones to experience a lot. The crash menopause symptoms were and still are very full on, especially initially. My joints - particularly hands and feet - scream at me most days. I'm still balancing exercise and some alternate pain relief and OTC pain relief. I'm seeing a physio next week at the Menopause clinic to see if there's anything else I can do. I let my GP know when my side effects are worse - and in the early days it was my med onc BC nurse. I hope your side effects settle down soon. cactusk139Views0likes0CommentsRe: Cdk 4/6 inhibitor - node negative
Hi Beginner I was prescribed Ribociclib for Stage 2B Grade 2 (and DCIS) (as well as Letrozole, Zoladex and Zometa) and was able to get this via the early access program (so only paid $31.60) through my medical oncologist. Unfortunately, after 5 months, I became very unwell due to a rare (but known) side affect which damaged my liver. It too over 3 months for my bloods to get back into the normal range and for me to feel better. My med onc has advised that going forward, there would be some issues if I needed to take another CDK4/6 medication, but (hopefully) that will be long into the future (if ever). From my readings on this site (and further) it seems some people are totally fine and have few side effects, whereas others, like me, don't. Do you feel OK on your CDK4/6? cactusk108Views0likes0CommentsRe: Duration of endocrine therapy in premenopausal Australian patients
Hi there, I was peri-menopausal when I was diagnosed. My onc has said that although 5 years is standard at present, studies will come through within the next 5 years that make it more likely that I'll be on the AI's for at least 7, but more likely 10 years. For the ovarian suppression, I was surprised that I would need to be on this for more than 2 - 3 years, given i was near to (but not quite) menopausal, hence my understanding that at least 3-5 years for the Zoladex, and that could be extended. I'm not sure what tests would need to happen for this to cease. I can choose an oophorectomy at any stage to cease the monthly injections, but I'm not keen for another procedure just yet. Have you discussed Ribociclib with your onc too? i'm also on Zometa (as 6 monthly infusions) and I"m not sure how long that will go on for - i assume as long as the AI's do. K45Views0likes0CommentsRe: Surreal
Hi @Ali78 This forum was and still is such a source of wisdom, comfort and a safe place to vent, share - it really is such a resource. In the early days, I formed a WhatsApp group for friends and family. After each significant moment (appointment or result or decision) my bestie updated this so that my nearest and dearest had up to date info at the same time, and I didn't have to go through the same story over and over. It really helped me keep people in the loop who cared about me, and meant I didn't have to worry about people not knowing. As others have said above, this bit is a whirlwind but as the path forward becomes clearer it really is a step by step process. All the best to you, Kelly14Views1like0CommentsRe: Chris O'Brien Lifehouse
Hi there, I didn't have my surgery at RPA but I did have my radiation at Chris O'Brien. They were really wonderful. I had a brilliant Radiation oncologist (Dr Georgia Harris), the nursing staff and radiation technicians were really good. I can't help with info re: public / private patients, but the care you will receive at the Lifehouse IMHO was very good. Hope all goes well with your surgery and treatment Kelly39Views0likes0Comments
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Work and breast cancer
PUBLIC GROUP - This is a space to connect around the challenges and questions that come with managing work and breast cancer. Whether you're navigating time off, returning to work, dealing with workplace conversations, or exploring your rights and options, you're welcome here. This group is open to the public (not just members of our online network) to help broaden access to important information, practical advice, and peer support.1 month ago17 Posts
