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Kat09
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Joined 9 years ago
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Re: Nerlynx
It's definitely worth a try @Pascoe, you may be one of the lucky ones who can tolerate it. Good luck with it and make sure you keep those gastro stop tabs handy 😉...for me though it was the nauseated feeling, low appetite and sore tum that were the worst to deal with... Take care4Views0likes0CommentsRe: Nerlynx
Hi @PV123, my reocurrance started in my lymph nodes under my left arm ( had full mastectomy and aux clearance on left side ) it was also in my C7 vertebrae. I'm going along really well now, have had a rough few months with none of the treatments working for too long and the disease spreading to my liver and lungs but I'm now on a new oral treatment just on the pbs, verzenio, and it thankfully is slowing things and I feel really well ,almost normal again. We are so very lucky to have access to so many treatment options...hopefully this one will continue working for a long time to come...I hope that you continue to recover and keep well, my Onc told me right from the start that I was in the high risk basket..thankfully my diagnosis is in the minority now19Views2likes0CommentsRe: Nerlynx
Hi @Pascoe, I was given this medication after I finished 15 months of treatment for stage 3 grade 3 triple positive bc. I was lucky and my oncologist was able to get it for me on compassionate grounds. The Neranitib made me feel sicker than any of the other treatments i went through ( i was lucky and had very few side effects from both AC and taxol chemo's) I felt nauseated, the inside of my stomach constantly ached and I had gone from enjoying my life and getting better to feeling worse than I did when I had cancer. Each of us is different and responds differently to medications and treatments but knowing how this med made me feel there's no way I'd pay for it. I lasted 3 weeks on this med and have a pretty high tolerance threshold. Working also was extremely difficult especially when the waves of gastro hit, 8 gastro stop tabs a day didn't help much. I believe we all should try whatever possible to help stop a reocurrence but not at the expense of quality of life or financial strain. Sadly my cancer returned in March last year, do I think taking Neranitib for 12 months would've stopped it, I'll never know but 1 thing I do know is I'm glad I didn't waste a good 12 months feeling awful only to get rediagnosed. Wishing you all the best in whatever treatment path you choose Kat x7Views2likes0CommentsRe: Anyone else had a PICC line?
Hi @vince, a port would be alot kinder and easier than a picc line given the length of your treatment. My Mum had a picc line in for 6 weeks it was horrible as the lines stay outside your body and become a nuisance, like being hooked up to an iv drip without the pole and bag. I had a port for my 15 months of treatment, inserted under my upper arm under the skin. Other than the initial few weeks a bit of bruising I didn't even know it was there. Makes treatment so much easier, so I'd definitely got port over picc Good luck with your treatment13Views0likes0CommentsRe: Ribociclib and Anastrozole
Hi @Palmbeachprincess, lovely of you to check in on me...been a rough few days, fatigue wise and had a small dose of the runs but have the gastro stop on hand thanks to the advice given here. The fatigue is easing a bit now, but could also be a case of what's there to do anyway with this whole lockdown thing. We shouldve been on our way to Port Douglas on Sat 😥 and not being able to see family and friends certainty doesn't help in our situations. All ours live separately to us and work so aren't prepared to take the risk they may be carrying something. How are you going with the restrictions?Re: Ribociclib and Anastrozole
Thanks @Palmbeachprincess, glad to hear your treatment is going so well. I also get a monthly bone strengthening injection every 4 weeks densobaub ( think that's how it's spelt ) gotta love the names they come up with. I start my magic pills tonight so here's hoping those spots in my liver and lungs do what they're supposed to and disappear. Stay well xxxRe: Ribociclib and Anastrozole
Hi @Palmbeachprincess and @Angelo , how are you coping on this treatment regime. I'm about to start on letrozole and abemaciclib after having been treated with chemo unsuccessfully ( semi ) Xeloda 6 months, Abraxene 3 and Erubulin 4 months. Each chemo kept things stable for a little while and then bang things went hay wire again. The Mets in my spine are now stable but my lung and liver are continuing to cause issues. I hope that this treatment is giving you some good results and not too many side effects?Re: Happy Birthday - 11 Nov - Kat09
Thanks to all of you for your kind Birthday wishes, the big 50 for me this year! I have had a few hiccups lately as my 3 monthly scans in Oct showed the Xeloda ( oral chemo ) had stopped working and in the words of my oncologist my cancer has exploded. I now have numerous mets to my spine , new mets in my lung and liver. adding to all that fun was that the cancer had caused my C7 vertebrae in my neck to collapse ( no wonder I was in pain ) So I had a 2 stage op in mid October to replace the vertebrae with a mesh cage , plates and screws. Whilst recovering from that and waiting the required 3 weeks to start my new IV chemo Abraxene - I woke to severe pain in my left hip, lower back and leg , off to emergency CT scan showed I had a pathological fracture to my L4 vertebrae, again caused by the cancer. This thankfully however was not surgical and I have returned home fitted with a custom back brace and a box full of high end pain meds that I am slowly needing less and less thankfully. My new chemo starts tomorrow and I am so keen to be receiving some type of treatment again to get this fkr under control. I will also be having radiation to the several spots in my spine in the near future. It is amazing to me that I can be so healthy and yet all of this is going on inside me. I am confident that once on chemo again things will settle and again we will go back to a different normal, til the next hiccup at least. I can not express how incredible all the medical staff have been that were and are involved in my care at The Epworth Richmond, every one of them made an extremely scary and stressful time a lot easier to cope with and I thank them all. Looking forward to hooking up to that magic potion tomorrow and taking some control back!!!3Views0likes0Comments
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This is group for people living with metastatic breast cancer (also called stage 4, secondary or advanced breast cancer). This is a safe, understanding space to connect with others who truly get what it’s like to hear the words that you are living with metastatic breast cancer. Together, we offer each other strength, compassion, hope encouragement and a place to talk openly—whatever you're facing.Choosing breast reconstruction
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