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Lmc1310
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Joined 9 years ago
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Re: I am leaving the forum
@Joannie - I just read your thread that Giovanna wanted to transfer to another sub group. I am so sorry if my post above offends you. I had no idea. I am absolutely mortified and wish I could delete. My sincerest apologies if I have offended you, I really want you to continue your contributions and I fear my comment above is so unbelievably inappropriate now that I've read your other thread. Take care :'(37Views0likes0CommentsRe: I am leaving the forum
@Joannie - oh dear, I was just getting to interact with your posts as I had been away. I am so saddened to hear of your experiences and hope you will come back to the site soon. I am on a few facebook sites, and find them less confronting and easier to navigate. One is for arimidex, another is Her2 and one for nerlynx. They seem to have a good balance of experiences and views. I do however remember a time when I had read so many comments along the lines of "12 month mammogram was clear -thank you Jesus". It got to me one day and I replied something along the lines of "very happy for you but how does that make me feel when I lost my 5 year old grandson to a brain tumour just before my own diagnosis". You can imagine all the thoughtless replies from so called Christians and I felt rotten for days. Something I learned on this site just this week is to work harder at understanding and validating others and not jumping in quickly to push my own point of view. Social media is a double edged sword. I hope to read a post from you again soon Joannie and sending you loads of hugs and best wishes.6Views0likes0CommentsRe: The Emotions of the week that was.
@primek thank you for sharing, you are certainly dealing with toooo toooo much at the moment. I hope you have time to rest over the weekend and waiting 2.5 years for nipple reconstruction is just the pits. I'm not the best with words so just wanted to let you know I am sending you hugs. xoxo7Views0likes0CommentsRe: Nerlynx trial
Hello @primek. It is a global trial through San Clinical trials unit, Sydney Adventist Hospital. For early stage Her2 like you and me. Need to have ceased herceptin within last 12 months. It will research occurrence and severity of diarrhoea during treatment with neratinib (nerlynx) and intensive loperamide prophylaxis. 6 neratinib tablets a day - yikes!17Views0likes0CommentsRe: 2 years on Prolia injections have significant affect on Bone Density improvement.
@Joannie the clinical trial link: www.ncbi.nlm.nih.gov/m/pubmed/28975661 - it cost USD$38. I'm no expert so found it hard going and a lot went over my head. Whilst I am loving high intensity weightlifting and hoping it strengthens my bones as it did in the women in the trial, the fact that the report noted that the trial excluded women undergoing cancer treatment or pre menopausal is of some concern for me. I am going to discuss continuing the bone clinic program with my oncologist and reviewing in 12 months. It is of course a worry too that I am forgoing Prolia's impact on recurrence. @Joannie I'm not sure if my link is the same as Mel's.18Views0likes0CommentsRe: 2 years on Prolia injections have significant affect on Bone Density improvement.
I just purchased and read the full report on the Liftmor (bone clinic) trial August 2017, Griffith University. From my reading the study was for post menopausal women and excluded women undergoing cancer treatment among other exclusions. @melclarity you are absolutely right having faith in your oncologists and continue to rejoice in your results. It would be great @BCNA, if a trial of Liftmor for pre and post menopausal women undergoing BC treatment could be sponsored. I am much earlier in my journey Mel and have osteoporosis in my arms and osteopoenia back and hips. I will give the programme 12 months and then if necessary start Prolia. I am a little unsure as Prolia has been shown to reduce the risk of recurrence. As @Afraser says, decisions, decisions. In the meantime Mel, continue your trail blazing and valuable support you give us all.13Views0likes0CommentsRe: 2 years on Prolia injections have significant affect on Bone Density improvement.
Hello Mel, I remember when I first came on this site (12/16) that your posts promoting using exercise physiologists inspired me. As a result I found an exercise physiologist during first AC chemo. Through my interest in exercise (inspired by you) I researched ways of building bone rather than taking drugs. I found the clinic in DeeWhy because of you. It has been running for around 6 months. Your journey has been longer and has been inspirational. I respect your input very much. Thank you so much and very best wishes.14Views1like0Comments
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Choosing breast reconstruction
PRIVATE GROUP. Choosing breast reconstruction after single or double mastectomy can feel overwhelming, and deeply personal. This group is here to connect you through others' stories and images. Please respect everyone’s privacy—do not copy or share content outside this space. Information is based on personal experience and is not medical advice; always consult your healthcare team for guidance. ⚠️CONTENT WARNING⚠️ Members may share photos of breast surgeries. These images or discussions may be distressing or triggering for some. If you need support, please contact the BCNA Helpline - we are here for you.
