33yrs Newly Diagnosed QLD Anyone Else?
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@Lythe Number 4 has hit me pretty hard with fatigue not as bad with the nausea this time, have had muscle pain and sensitive skin this time round. I’ve had to stay with my parents so far as hubby has had back to back shifts and I couldn’t look after the kids by myself but they and myself have been well taken care of very lucky in that regard. I’m glad you have been able to organise play dates for your son, that would give you some reprieve. I would definitely like to know how you go with the acupuncture, I will try anything if if gives us a much needed break. This is exhausting. It’s funny I can’t wait for active treatment to be over but then comes along the next lot of issues I guess. Thanks for your reply
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Hi @Bron33 I am a bit older than you at 44 but I also have two young children 4 and 7. I also have a triple positive cancer but mine is IBC. Strongly HER2+ and weakly ER/PR+. Had only two rounds of AC because it was not effective and then 12 Taxol with Herceptin and Perjeta. My cancer responded much better to this combo. Just had my mastectomy/axillary clearance surgery yesterday. Will find out next week if I had a complete response but the surgeon did say something about cancer in the nodes but not whether it was dead or alive.I just wanted to tell you that I used ice baths during Taxol administration and dipped hands and feet in as I could stand it. I haven’t had any peripheral neuropathy and I managed to get through all 12. I was very determined to get through the whole course because I was having chemo before surgery and I wanted to give myself the best chance of beating down the cancer.Thankfully after 5 weeks on the Paclitaxel my cancer had responded really well (like 75-90% reduced). So after 7 more doses and the targeted therapy I’m hoping it was knocked over. I remember how scary it all was in the early days and I got great support on this site. I wish you the very best.Just wanted to suggest that you might try doing the ice bath thing. I also worried about nail issues (had none) and hand/foot syndrome. I got the ice from a machine in my cancer centre and brought my own containers. You might not tolerate it and I think it has to be done from the first treatment to work. But because this can be a lifelong side effect of Taxol I thought it was worth a try. And it seemed to work for me. I used gloves and a plastic bag to vaguely insulate me from extreme cold. When it got too cold I would take out and put in again once I felt ready.2
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@Bron33 I finished radiation in September so am finished "active treatment" for three months now and am now using Zoladex monthly and letrozole daily...you will need some sort of ongoing treatment being triple positive as well. This brings its own set of struggles and does cause some pain but is manageable so far...
Its really nice being back at work having a bit of something to do again.
Merry Xmas and good luck with Taxol.2 -
@kabash thank you so much for all the information you have shared this will help me greatly. Pls let me know how you get on with your results. I had a ultrasound after my 4th AC to see if my tumors responded, 1st tumor shrunk a small amount it was 2cm tech said It had shrunk in width but not length, 2nd tumor went from 10mm down to 6mm and the 1 lymph node that tested positive and appeared enlarged had gone back down to normal size. I start taxol on 2nd jan.
thank you again and I hope all has gone well for you 2 -
@youngdogmum did you do zoladex during chemo at all? I see so many people doing it but I haven’t been offered this and I’m still getting my period it hasn’t stopped from chemo so far. Will ask my Oncologist next week. They said Tamoxifen for hormone therapy at the end. I’m really worried about keeping my hormones under control at the end I was 95% positive for hormones.I hope you had a lovely Christmas also 0
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@Bron33 yes I did zoladex throughout, more for fertility though, as the theory goes if you turn off your ovaries during chemo therapy they won’t lose as much function. I am going to take a guess and assume they didn’t offer it to you because you already have kids and they probably assumed you didn’t want more..? Not everyone loses fertility through chemo but the risk is there unfortunately.
Do you feel comfortable about the tamoxifen? Ask them about their reasoning for that drug choice versus an aromatase inhibitor just so you understand!
I did thank you I hope you did as well considering you’re onto your fourth AC that’s something to celebrate at least! Getting closer now 1 -
Hi everyone. I am 46 with a 14 year old and 11 year old and just joined the Network today. I live on the North side of Brisbane and will be (eventually) attending the RBWH. I was diagnosed on Christmas Eve with Invasive Ductal Carcinoma with LVI seen. Seeing the specialist on the 8th or 9th of January to go through my treatment plan so I have not idea what to expect. I don't even know what the diagnosis really means yet. Some reports are quite scary but others are not as bad.0
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Here's a couple of links to help you from BCNA. Do not google as it is sometimes someone's opinion which isn't always correct
https://www.bcna.org.au/understanding-breast-cancer/what-is-breast-cancer/
There's a link within to find your type and another to gain an understanding of pathology report
Hopefully this reading will help
The link is a group within the forum
https://onlinenetwork.bcna.org.au/group/23-invasive-lobular-cancer-ilc
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Welcome! No-one really wants to be here, and not the Christmas surprise you want but it’s a warm and friendly place on the network, with good advice from people who have first hand experience.
First advice is, don’t Google! Breast cancer is not one thing, it’s a mixture of many facets and many complexities. Treatment is therefore individual. Two people with apparently the same diagnosis may have different treatments, because other factors may come into play. Reports on Google are not moderated - they may reflect one person’s view but they may not be accurate or up to date.
Second, your medical team will be very important. You need to feel comfortable with them and trust their advice. Have you someone who can go with you on your first appointment? Can be really handy to have someone to take notes (also useful to make out a list of questions beforehand) as this can feel like a whole new language and it’s easy to forget things in the rush of new information.
Others on the network can give good advice on how you keep your children informed but not scared.
Once you know what treatment is recommended and have a plan, things do become a bit clearer and it’s easier to focus on each step. It’s hard but try not to think too far ahead - you would not be the first to worry about something that never happens! One step at a time. Best wishes.
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Fire Dr. Google.... Check.
Don't Panic..... working on it.
Thanks so much for the messages. I will check in again after my specialist appointment when I go through my treatment plan.2 -
And keep that sense of humour! It’s invaluable.2
