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Ausmum2
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Joined 5 years ago
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Re: Paclitaxel side effects
Hey there @arpha875 I am late to the party but @Abbydog was my cheersquad when I did 4xAC followed by 12xpaclitaxel with cold capping last year. I found the Paclitaxel “different” to AC. The AC cycles were easier to manage as they were longer, but knocked me around a bit more, because you know AC. But the Paclitaxel felt a bit more “relentless” as the cycles were shorter and basically took up 3 days of every 7 when you did bloods, onc visit and infusions on seperate days (learnt to try and get them in no more than 2 days ha ha ha). I also didn’t get to whack out my 12 consecutive as my WCC crashed and burned as it didn’t have the chance to bounce back - so I ended up with the WCC shots for three days out of every 7 day cycle too, so that o would be ready to go again… basically I found the Paclitaxel took a bit more of my head space. The cold capping “worked” for me - overall I kept about maybe 40% of my hair during AC and during Paclitaxel it starting growing back in and fast and thick and very curly. The regrowth and thickness was thanks to cold capping. With the Paclitaxel I also had more in the way of side effects with reflux (lots of meds, all the meds basically), nails (used good quality cuticular oil on hands and feet nails 2xday plus dense hand cream on both 2x a day but other times of day) and neuropathy (which has continued but I’m working on). I also found the chemo brain and lack of co-ordination real ha ha ha. Also, after being excited that my eyelashes and eyebrows survived AC, they all promptly fell out over my second cycle of Paclitaxel. Apparently it’s really common for them to hang in through AC and fall out just after you finish. Lovely… traitors :) but I did learn to draw them in that’s to “look good feel better”. Good luck as you head into Paclitaxel!4Views0likes0CommentsRe: Was it only a cyst??????
@Mimand I was a cyst that was core biopsied (u/s and mammogrammed) as a cyst, that then grew over a few months and was retested as a cyst (u/s and mammogrammed again) and fine needle aspiration that turned out to be …yeah, not a cyst at all… TNBC - 16 months later Post chemo, radios double mastectomy, genetic testing,,,etc etc etc - the hole enchilada… wasn’t a cyst…. go with your gut12Views0likes0CommentsRe: Family Genetics CHEK2
Hey @Diana_M3058 maybe pop over to the Pink Hope group on FB if you haven’t already. Over there you’ll find the gene positives. Also, you can check the medical advice (ie what oncologists, breast surgeons etc) in Australia use regarding cancer treatments including genetic positive/preventative advice on eviq (https://www.eviq.org.au/) if you search on chek2 there is information for patients/caters/families and clinicians (as for all cancer treatments etc) cheers11Views0likes0CommentsRe: Scalp cooling - should I stop, done 11 chemos and 5 to go
Hey, I’m late to this party but I was the opposite. Cold capping - I lost about 70% of hair on AC and had the team encouraging me to keep going with the gauze etc for cold capping as it would help the hair regrowth on taxol and boy did it. My hair has come in thick and fast during the end If taxol and grown like grass since. It’s pure white but apparently the colour can change over time too. It’s so thick and whilst I’ve passed through “poodle do” stage and it’s not regrowing straight, it’s actually amazingly healthy. Good luck!51Views1like0CommentsRe: Newly diagnosed - private or public
Hey @NikkiJ6 I’m a bit late to the party but I’m a GC TNBC chick too. I went private (had the insurances etc) but I know a lot of the lovelies who have gone public at both GC Uni Hospital or Robina and the Breastcare nurses rock on that pathway. I also had a private oncologist and surgeon who were “no gap” (incredible but true!). As a TNBC and a young woman, also think about checking out So Brave and Pink Hope. There’s lots of support via them for the TNBC young ones also! cheers13Views0likes0CommentsRe: Eyebrows
Hello @Hendrix After having fabulous lush eyebrows, they grew back in patchy post chemo, so I’ve had them tattooed in to even them out. I also went to “look good feel better” classes to learn eyebrow products and learn to use them. Really helpful (as I’d never had to “eyebrow” before having lovely ones with tinting and waxing). As for scalp, I cold capped but I still got the dry flaky reaction (as I have always had “allergy skin” and “sensitive scalp”) I used scalp creme from Philip Kingsley (as I also used their parabene and colour free shampoo and conditioner as they ask you to use these during cold capping - joys of a hairdresser daughter- she can recommend lovely product) and it was the bomb diggity. Now I’m using curl crème to help tame the chemo curls ha ha ha (most days I look like Einstein or de Julius Sumner Miller 😝) good luck35Views1like0CommentsRe: Newly diagnosed - Triple Negative Breast Cancer
Hey @MargieD Just slide in and found this. I’m not around so much anymore as I’m gradually going back to work etc. I’m so glad you are doing well. As you say “one day at a time” (and sometimes only one hour or one second) is enough. I did LGFB also (had no idea what to do with makeup without them - even to buy it ha ha ha) and I’ve also had an awesome Pinc and Steel team (as I want my functionality back) who I’m working with now (hydrotherapy is the bomb diggity). I’ve also found Pink Hope amazing for support too (mainly younger and TNBC lassies). Like you from time to time I “wonder” (Eg am I more at risk as no immunotherapy, or should I have had neoadjuvant treatment offered blah blah blah) but I just remind myself to “trust the experts” as they’ve got me this far :-:smile: keep giving cancer the old “hard time” lovely and just one teensy step at a time.9Views1like0CommentsRe: Feeling sorry and horrible
@Siewli just some words of encouragement for you also. You can do this. Just focus on one teeny tiny step at a time each day. I found all I had to expect or myself was “today”. If I only “expected and planned for today” it all just “went”. And my only other words or encouragement “take all the side effect mitigation drugs anyone will give you, including your GP, whether you think you need them or not”. That also helped me.13Views1like0CommentsRe: Radiation - with or without tattoo
Hi @ARichies i didn’t have tattoos either (finished December 2021). The team told me that tattoos are now not done if possible as the research indicates that “the tattoos are seen as another permanent reminder of treatment.” As a double mastectomy girl I didn’t care….😂 I was also right so no deep breath, lots of nuking for me and I was warned there was no way we could not leave me with lung damage. I’m a TNBC and had central, auxilla, cervical, supra and infraclavicular and pectoral nodes done. I had mepitel (as I have reactive skin) and was given the silver based burn cream as my skin did blister and form pustules. But here we are out the other side. You’ll do great.16Views0likes0Comments
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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
