byo_boy
Member
Joined 1 year ago
User Profile
User Widgets
Contributions
Re: Neoadjuvant PLUS adjuvant chemotherapy?
Hi @Katie46 - thanks for the message. No, we've not had any indication of what type of chemotherapy it would be if it's required, however I think we'll probably find out after the pathology comes back post-surgery. Honestly, our initial reaction was to assume it'd be more outpatient infusion stuff like what we've had already with more hair loss and all the other full-on side-effects; we hadn't actually considered that it might be in tablet form and not as "involved" as the ACT regime we've been going through. I will make sure to ask when we see our team this Friday though - that's really great info, thank you! George50Views0likes0CommentsNeoadjuvant PLUS adjuvant chemotherapy?
Hi everyone, As my wife's neoadjuvant chemotherapy draws to a close we've been looking more forward to surgery / radiation, however her breast care coordinator dropped a new bit of information last week that, depending on the pathology of her tumour, she may require additional chemotherapy after surgery. This was a bit of a bombshell, since it's the first time we've heard anything about this being a thing and although the coordinator said that "it's a good thing, since it gives us more options", it doesn't feel like a good thing. We've been steadily working through this process for the last 4 months assuming that we'll get to the finish line and be able close the book on chemo and move on, but now it looks like we have an uncertain pathway again. I'd love to hear from anyone who's had this experience of getting through months of neoadjuvant chemotherapy only to find out that they needed more after surgery. What were the circumstances that drove that decision and what did the adjuvant portion of chemotherapy look like? Was it months of the same again, or a different regime? I get that everyone's different and your circumstances may not be exactly the same, but I'd appreciate any input so we can feel more informed and plan appropriately. Thanks! GeorgeGarvan Institute of Medical Research - Annual Breast Cancer Public Lecture 2024
Hi all, Just watched the annual presentation from the Garvan on the state of breast cancer research in 2024 - it was very interesting and I thought others might find it useful. For those on Facebook: https://fb.watch/v6V4Y2N2_B For those not on Facebook I've uploaded a copy to YouTube: https://youtu.be/5CPHZuYuQDM George76Views3likes0CommentsRe: Intro + Neoadjuvant or Adjuvant Chemo?
Hi @veenaga - thank you for your message and advice - I actually did forget about this important part of the process, so appreciate this. My wife is a Clinical Nurse who, up to her diagnosis, worked in a local public hospital, so has been fortunate to be very well supported, both financially and emotionally by her colleagues. She has, as a part of her superannuation, access to income protection - something that (as you very correctly suggest) we started the application for immediately. The biggest hurdle for us in getting the income protection payments approved was the fact that her superannuation's default was a 90 day waiting period instead of a 30 day one, so we had to just suck that up a bit - that said, she is a very dedicated worker and had so much sick leave banked up that she's been able to take a few months off on leave until her income protection kicks in, so we've not had much of a gap. I think the main takeaways for us in applying for and receiving income protection are: Check your waiting period today, even if you're not thinking of accessing income protection. That extra 30 or 60 days can make a HUGE difference financially. Apply as soon as you can. Read the application thoroughly and make sure you have all the documentation and information required before you apply. Speak to your employer and medical team and let them know that you're going to be sending in forms for them to complete ASAP - you don't want to be waiting for weeks because your HR department are sitting on the form. Follow up with them regularly to make sure they're getting it done. Take any help you can get - we were assigned a personal case manager and her role is to not only help us through this phase, but also to work with us to get my wife back into work in a safe and healthy way. We've paid fair premiums and so we're going to lean on them and take advantage of every service or assistance they can offer. Couldn't agree more on the Public System as well - we're fortunate to be living near enough to commute to the Royal Brisbane Women's Hospital and have had all appointments there. We've met and been taken care of by such dedicated and amazing people who we have grown to know quite well - it also helps to have all the team under the same roof and every facility we need is in the same place which saves on time and data sharing hiccups. In terms of costs, we've not paid a cent for our treatment so far - in fact the only things we've paid for are a few pharmacy items and a portacath insertion which we paid for privately due to massive waiting times in the Public System (well worth it, and there's still a large Medicare rebate so still relatively affordable considering the benefits it brings). The only real ripoff - which I think I've already mentioned - is the cost of car parks and the fact that our appointment schedule means we don't qualify for any concessions. That said, we've found a smaller car park only 5 minutes away which is literally half the price, so even that's been manageable. Thank you so much for your message, that's great advice - I hope you're travelling well and that you have an amazing day! George5Views0likes0CommentsRe: Intro + Neoadjuvant or Adjuvant Chemo?
Hi everyone, thought I'd just take a sec to give an update on our situation - it's always good to hear how people are going, so here we go! We're now just over halfway done with neoadjuvant chemo, having completed all of the AC rounds and 5 out of 12 Paclitaxel rounds. The AC was definitely tougher than the Taxols with more notable side effects like constipation, heartburn a little nausea and obviously hair loss, but Rebecca made it through that OK and is now being treated much less harshly by the Taxols with, so far, no signs of neuropathy or any damage to nails, skin etc. We had an ultrasound last Monday to check on the response to the chemo and met with our surgical team on Wednesday to discuss the results. I'm very happy to report that Rebecca's primary tumour has shrunk by more than half and the lymph node that was cancerous now shows "normal morphology", i.e., the cancer appears to be gone. This is obviously great news since it now means a much better chance of full recovery with a minor lymph node excision, rather than a full axillary dissection and a lumpectomy instead of a mastectomy, which is where we thought we were heading before we started treatment. In addition, all of the genetic panels have come back negative, so everyone is absolutely stoked. We've now got a surgery date booked in early December and are hoping to have a nice Christmas with radiation done and dusted by mid-February. I can't thank everyone here enough for all the support we've had, both publicly and privately. We know we're going to get a great outcome and having good people to lean on has played a big part in our success and positive mindset so far. If anyone's interested, there are a couple of things we've done which may or may not have helped including: 1. Exercise. Exercise. Exercise - We've been doing daily walks and physio-based training almost every day for the last few months. Sometimes only a short walk of 2-3KMs, but have regularly done 5-7KM walks, sometimes only a day or two after treatment. Obviously your mileage will vary depending on how you're feeling, but I can't emphasise enough just how much of a difference this has made. 2. Diet - Healthy eating and LOTS of fluids - water, fresh juices etc, all go a LONG way to helping the body stay hydrated and able to cope. Lots of salads, veggies and protein (chicken, fish, lentils etc) have helped - we've also cut right down on red meat and processed meats like sausages and bacon 😢 There has been some challenges with loss of taste, especially during the AC rounds, but we adjusted our meal plans to accommodate for that by introducing more flavourful meals. 3. Sleep - Despite the premeds and steroids, our treatment days have been long, with multiple hour commutes to the hospital, so by the time we get back it's not hard to fall asleep. We've aimed for a minimum of 6 hours, but try for at least 8 a night and, for the most part, seem to be managing. 4. Supplements - We've avoided all supplements (as well as things like caffeine, aka coffee, tea, coke etc), except for Vitamin D which gets taken every night, along with some magnesium after a blood test recently showed a bit of a drop there (subsequent tests have been good, so we'll probably stop those once they're finished). Pantoprazole has been a life saver for preventing reflux and heartburn and gets taken almost daily as well, but other than that, given the good blood results we get every week, the nutrition seems to be keeping up. 5. Documentation - We write everything down, from consult notes to treatment timings etc plus a daily log of vitals like fluid intake, temps, meals, side effects etc. None of it has really been required, but it's good to see any patterns emerging before they become an issue. A good example of that was how we noticed Rebecca's skin was getting more itchy over certain days and that helped us manage things with applying more regular moisturising etc. 6. Advocacy - Always speak up in your consults. We've realised that the Public System, as amazing as it is, is massively under staffed and under resourced, so we've had to often act as our own best advocates in asking questions, pushing for scans, discussing side effects etc. There's been a few times where if we hadn't spoken up the doctors would have missed something like a blood test number or similar. It doesn't take much time and if your notes etc are on point you will often be more organised than your consultant. 7. Gadgets, pills and potions - We've tried not to go too crazy with random Internet tips, but some of the things that have worked are definitely soft toothbrushes, regular mouthwashing with a gentle mouthwash, nail strengthener, moisturizer and sunscreen plus just general hygiene tips like weekly bathroom cleans and bedding changes. We've also been using ice gloves and booties during the Paclitaxels (much to the amusement of the great staff in Oncology!) - we're not sure if it's doing anything, but it can't hurt to try and so far, so good! I hope that helps someone out there - when we started this journey, our biggest fear was the unknown and now that we're getting on with it, hopefully we can be a little beacon of hope for others who might be struggling as well. We're obviously nowhere near done, and recognise the road ahead is still going to be pretty arduous, but we know now that a positive mindset, good moral support and a great medical team can definitely help carry you a long way. Hope you all have a great week - I'll definitely be back with another update soon. Take care ❤️ George0Views1like0CommentsRe: Pathology report
Just as a note - you can see some pathology and other reports on My Health Record if you've enrolled for that service. Things like blood test results are there too, but generally aren't accessible for at least 7 days - I'm guessing it stops people self-diagnosing and freaking out before they see their GP, but I feel like those records are your data and should be accessible regardless. Hope you feel better soon @melzzs!!!31Views5likes0CommentsRe: Struggling with Negative Emotions
Hi @jconnolly4285 Really sorry to hear about your situation - I hope that things will only continue to get better and better for you from here on out. For what it's worth I thought I might give my perspective as the carer and partner of an equally private and incredibly amazing woman who's been diagnosed and is currently undergoing treatment, in the hope that it might offer you some food for thought. I won't comment on the mastectomy side of things - we're yet to cross that bridge - but when we found out about my wife's diagnosis I was absolutely shattered. She is the glue that holds our family together and my best friend in the whole world - as a husband and provider, my biggest mental hurdle in the beginning was the fact that no matter how strong or smart I am, I couldn't fix her. That probably broke me more than anything else and honestly the only thing that helped me cope and become a more helpful carer was actually reaching out to close friends and family for support and reassurance, albeit with my wife's knowledge and OK. We are a pretty quiet and private family who don't generally socialise or even really know / talk to our neighbours. We prefer to stick to ourselves and don't really go out or do events etc, so our support circle is pretty small. I don't know the circumstances around your family and their reasons for disclosing your condition to others, but I do think it's worth maybe reaching out to those loved ones and maybe talking about and trying to understand their reasons for their talking about your condition to others. For some, like me, it may just have been a way for them to cope and seek support. I guess what it boils down to is that you're the only one who can truly know what it's like to go through this journey, but those around you, especially those who love and care for you, are also experiencing this difficult season and will have their own way of coping with it all. I hope that makes sense, and ultimately I could be completely wrong, but either way, I wish you the absolute best and all the healing and happy vibes I can muster. You'll be in my thoughts and prayers along with the many others enduring this difficult situation. Take care! George4Views1like0CommentsRe: Other Side Effects
Hi @BC_47, My wife has also just finished her 4 AC rounds and started her Taxol treatments and has been using Nail Aid Biotin since the beginning to try and strengthen her nails etc. So far, so good, but time will tell. We found some at https://www.amazon.com.au/dp/B01DG10XA6 but you may be able to find similar locally, maybe at Chemist Warehouse. I've also seen Polybalm (https://polybalm.com) mentioned a few times in various places. Not cheap, but worth looking into? Hope that helps! George11Views0likes0Comments
Groups
No places to display