Katie46
Member
Joined 2 years ago
User Profile
User Widgets
Contributions
Re: Grade 3 Oncotype Test Chemo decisions
Hi Jill I can only say that I went with the advice given to me by my oncologist, he strongly recommended that I do chemo. I did 4 rounds of doxorubicin/ac chemo every 2 weeks, and then 12 weekly sessions of paclitaxel, radiation and I'm now on hormone blockers. If you are unsure, have a chat with your McGrath Nurse if you have one, mine were wonderful and happy to explain everything again. It's an overwhelming time, don't be afraid to ask lots of questions. I found chemo was manageable, I avoided the worst side effects, and I got through it. All the best, Katie14Views1like0CommentsRe: Scalp issues on medications
Hi JJR23 I'm into my second year of letrozole and abemaciclib. I'm fairly convinced the letrozole is causing the reduction of oil in my skin, or rather the lack of oestrogen. I also now have very dry eyes, I'm blaming letrozole for that too, although it started when I was on chemo. Prior to all this I had quite oily skin and had to wash my hair every other day or it looked greasy, so although I've noticed it's a lot drier now, it's not itchy or patchy. Using sorbolene moisturiser daily and moo goo is working for me. I've had a bumpy road with abemaciclib, my stomach does not like it at all. I started on 150 x 2 a day and that was a definite no, I only lasted 5 weeks and felt absolutely awful. I dropped down to 100 x 2 a day and that was a definite improvement, I was still getting stomach issues but it was more manageable with gastro stop. Recently the diarrhoea started ramping up again, so they've dropped me down to 50 x 2 daily, which has calmed things down again, so hopefully that will get me to the end of the 2 years.17Views0likes0CommentsRe: Scalp issues on medications
Hi JJR23 I'm currently on letrozole and abemaciclib and find my skin is a lot drier than it used to be, and I can get away with washing my hair once or twice a week, which I never would have got away with pre chemo and other medication. I'm using moogoo shampoo and conditioner at the moment, it's quite mild and doesn't dry my scalp. Katie56Views0likes2CommentsRe: Grade 3 Oncotype Test Chemo decisions
Hi Chan7 I was 50 when diagnosed. IDC stage 2 grade 3, 2cm, 1 lymph node positive, ER+ PR+ HER2 -. I had a lumpectomy, chemo, radiation and am now on letrozole, Goserelin injections monthly and abemaciclib for 2 years. I was diagnosed in October 2023. My oncologist strongly advised me to have chemo, mainly because of the high grade of cancer which put me at a higher risk of reoccurance. He told me even without the lymph node being positive he would still recommended chemo because of the high grade. I decided that I'd do whatever was recommended, throwing everything at it, and I'm comfortable with the decisions I made. It's an overwhelming time with lots of things happening. Ask to have another chat with your oncologist, and speak to your McGrath nurse if you have one, don't be afraid to ask lots of questions to help you make these decisions. All the best Katie47Views2likes4CommentsRe: How Do you decide what treatment when there are so many options?
Hi CaptnK I found my McGrath Nurses were very helpful and answered a lot of my questions regarding my treatment and timefames. 2 years down the track they are still the first people I speak to if I have any queries or questions about medication and appointments. They have been, and continue to be, amazing. The early stages of diagnosis can be very overwhelming and scary, with lots of information and decisions that need to be made. It's a good idea to take someone with you to your appointments if you can, it's easy to miss something and another set of ears are helpful. All the best, Katie56Views1like0CommentsRe: Tamoxifen to Anastrazole
Hi Suki I'm on Letrozole and Goserelin injections as I wad pre menopausal when I was diagnosed. I initially felt very stiff and had muscle aches, not severe, but definitely very noticeable, particularly if I was sitting down for ling periods of time, and I felt very creaky until I got moving. I noticed that over time it settled down a lot and 18 months in its now pretty mild and stretching and keeping active with walking and aqua aerobics really helps. I feel like the worse symptoms were caused by the rapid loss of oestrogen and now my body has adapted to living without it. I'm waiting for a hysterectomy and ovary removal so I won't need the Goserelin, and I wonder if that will make any difference.105Views1like1CommentRe: Abemaciclib Verezenio side effects
My oncologist told me that research shows a reduction of dose does not seem to affect the outcomes, and it was more beneficial to keep me on the medication at a lower dose than to stop it all together. If I can tolerate it that way, it's still beneficial, rather than have to give up because the higher dose is not suitable for me. 150x2 per day was absolutely not achievable long term for me, I had to stop after 5 weeks, it was awful. I had a 4 week break and started again. As this is an added preventative treatment for me they said they want me to have a good quality of life as well. The trial research is showing that people who were offered a reduction of dose early on were much more likely to finish the 2 years. People who were not offered a reduction were more likely to stop treatment, which I would have done as my body just couldn't tolerate it.52Views1like1CommentRe: Cording/axillary web syndrome
I had a lumpectomy and sentinel node removal. Chemo and then radiation. I had some physio sessions after my radiation treatment and everything seemed fine until about 7 months after I finished treatment and I lost a lot of mobility in my shoulder and had a lot of tightness and discomfort around and down my right arm, despite keeping up my exercises. It seemed to happen very quickly, rather than being a gradual loss. My doctor gave me 5 physio sessions available on a Medicare plan. The physio was painful at times and I had some bruising after one particularly intense session on the scar tissue in my arm, but it did the trick and I almost have full range of movement in my shoulder again and most of the tightness has gone. I keep up my exercises, and will go for more physio if I notice it getting bad again.10Views2likes1CommentRe: Abemaciclib Verezenio side effects
I'm almost 15 months taking abemaciclib. I'm on 100mg x 2 daily and it's manageable, having reduced from 150mg x 2 which was unmanageable, my body was having none of it. My bloods have been good the whole time, my stomach is another story. Milk is a definite no, small amounts of dairy are ok, and from time to time it rebels for no apparent reason. I've reached a point where I know the signs and I'm balancing things with gastro stop, taking 1 every few days seems to help a lot and keep me out of trouble, and life is fairly normal. My oncologist has been great and told me I can take a few days break if it gets bad, which I've had to do occasionally. He is keen to keep me on it for the 2 years, even if it means reducing the dose again, and taking short breaks, but it seems to have settled down a bit more recently. He also said that can happen as well. My hair is ok, it shed quite a bit a while back, but has also settled down, so I'm not sure if that was just it settling back into a shedding pattern. I feel like it's slightly thiner at the temples, but my hairdresser says it's normal for menopausal women to thin slightly at the temples, and to be honest it's only me that notices it when I pull my fringe back. As you say, we're still here, and abemaciclib has had good results so far, so I'm happy to stick with it.26Views2likes3CommentsRe: Eye health changes
Hi Tri My eyes have been dry since I started chemo 2 years ago, and didn't improve when I finished and swapped onto letrozole and abemaciclib. I've been to the optician several times, and they say my overall eye heath is fine, but I have very dry eyes. I also have more floaters than I used to. The dry eyes are worse at night when my eyes stick together. On my last visit I was told I have a Blepharitis infection in my eyelashes 🤷♀️ and to use optisooth wipes which are infused with tea tree, and this seems to have improved things a bit. I'm also using Cationorm drops which I'm finding better than Hydro Forte at the moment (I think I have tried every eye drop in Chemist Warehouse). My optician also recommended it. I think it's going to be a long term issue for me. I'm hoping it might improve a bit when I finish abemaciclib later this year. All the best Katie62Views3likes1Comment
Groups
Let's talk: vaginas, menopause & me
PRIVATE GROUP. This group is a safe, supportive space to talk about sexual health and emotional wellbeing during and after breast cancer. We discuss topics like menopause, vaginal dryness, pain during sex, UTIs, and changes in libido, and share ideas and products that may help. Whether you're navigating intimacy with a partner or reconnecting with yourself, you're not alone here. This is a place for open, respectful conversations and shared understanding.
