Zoladex 3 monthly available but not PBS covered for women
I wanted to share something I recently learned as it might help ease the burden of regular monthly injections. I recently learned that the goserelin injections many of us have monthly are actually available in a 3 monthly dose (10.8mg). I was a really hopeful thinking this could significantly reduce the stress, time and cost that comes with needing to have an injection every 4 weeks. However, my Med Onc informed me that in Australia, the PBS doesn't subsidise the 3 monthly dose for women, although it does for men (prostate cancer). The reasoning given that there's `insufficient evidence of reliable suppression of serum oestradiol' in women. What doesn't make sense is that there is evidence suggesting otherwise. Recent research indicates that the 3 monthly dose is non-inferior to the monthly dose for pre-menopausal women with breast cancer in terms of ovarian suppression. For me, the monthly injections come with a real burden: financially - GP visits and medication add up every month time wise - frequent GP appointments and pharmacy trips take time out of the week. physically and emotionally - injection itself is painful, it's a large slow release implant into the abdominal subcutaneous tissue. The main alternative - surgical removal of the ovaries is obviously much more invasive and comes with it's own risks and long term consequences. Given that the 3 monthly option is already in use, clinically tested and could ease the burden for many of us, I would really like to see equal PBS access for women. I'm curious, has anyone else looked into this and how to go about taking action?
Hormone Blockers Weight gain & GLP-1s
Hi Everyone, I am 53 yeards old and 3 years into hormone blockers and am managing (barely) all the side-effects except for one. Weight gain. I have always been fit and active and I am working out more than ever and eating incredibly healthy and nothing seems to make a difference. I have slowly increased from a size 10 to almost a 14 since commencing hormone blockers. I have seen some medical evidence that GLP-1's at a low dose have been helpful for not just weight loss but also a reduction in other side effects as well. Has anyone else had a conversation with their oncologist regarding using GLP-1's and potential benefits? I don't like the thought of taking yet another drug but I am getting to the point of worrying about everything I eat and also cannot afford to keep buying another size up! If anyone has any info on this topic or knows of any specialists in this space I would appreciate it very much, Thanks!!Scalp cooling - tips on cap size and forehead pressure?
Hi all, I'm about to start my first of 12 x weekly paclitaxel treatments on Monday (combined with trastuzumab infusions every three weeks). I am keen to try scalp cooling to try to reduce hair loss and had gotten my mind around the cold factor (I think!). However, I had my chemo education session yesterday and got to try on a cap. I discovered that the cap alone for just a few minutes was very uncomfortable/slightly painful on my forehead and am now not sure how I'll go with this for several hours! The nurse did get me to then try the next cap size up, but this didn't seem to be as good a fit and had a gap at the back of my head - hence may not be effective. I also didn't have a headband on when I tried the first cap - so possibly this might also help a little. Just wondering if this tightness/pressure/forehead pain is normal or if anyone else has experience and tips on dealing with this? I noticed from other posts about scalp cooling that these seem to suggest the hardest period is the first 15-20 mins and then your head acclimatises/becomes numb. Just wondering if this also applies to the feeling of tightness of the cap? Or if there are any other tips on reducing pain/pressure on your forehead during the cooling process? I figure I'll give it a go anyway on Monday as I can always stop the scalp cooling if it is too much for me, but any advice would be very welcome!Lymphoedema Information & Events
Lymphoedema can develop after breast cancer surgery or radiotherapy treatment. If lymph nodes are removed – usually from the armpit – fluid can build up and cause swelling known as ‘lymphoedema’. Find out what causes it, ways to reduce your risk of lymphoedema, and what to do if you develop lymphoedema. Signs and symptoms of lymphoedema Reduce your risk of lymphoedema Lymphoedema treatment Compression garments for lymphoedema Coping with lymphoedema Watch Ask the Expert 'Living well with lymphoedema' - with Maree O’Connor
Scalp issues on medications
Hi. Just wondering if anyone has any issues while on Abemiciclib and letrozole with scalp dry patches? I’ve always had beautiful healthy hair and skin but since my diagnosis and treatment I’ve had scalp issues. I didn’t have this problem during chemo etc. but have the last 2 months. Any tips on how to resolve it would be very appreciated. I have tried several creams, shampoos etc. X
Starting radiation
Hello all, I will be starting radiation tomorrow. I had a complete pathological response after 6 months of chemo and a double mastectomy with complete axillary node removal and DIEP recon. But since I am young and had TNBC I was advised to have radiation to mop up strays as they say. I am terrified of radiation and always have been even more than chemo. So I would like to hear from anyone who has been through radiation. How was the experience for you? Especially if you had it to your sub-clavicular nodes (neck). Do you still have scars? skin changes? tightness?lymphoedema? Any tips or tricks? I will be having a total of 15 sessions (40Gy). Any advice or stories welcome :) Thanks.
Radiation, driving and fatigue
I was hoping to hear about any experiences of driving and fatigue while undergoing radiation. I've been told to be aware of fatigue. The radiation oncologist and nurses have raised concerns and eyebrows when I've told them it's a one hour drive door to door, so two hour round trip x 15 sessions. I'm also maintaining hope that I can continue working part time in an outdoors job where lately I'm doing 14k+ steps a day. Ultimately I'm going to see how it goes. I'm not going to break myself. If I get too tired then I have backup people to help with the driving (public transport isn't an option around here), reduce my activity at work or take leave, or get accommodation near the hospital for some of the sessions. I'm wondering if some people have got through radiation without fatigue? Or if fatigue has occurred has it affected driving? And how fast the fatigue appears - might you have been okay one morning and zonked in the afternoon?Radiation post DIEP
Hello all, I am exactly 4 weeks post double mastectomy and DIEP (including complete node clearance) which I had after 6 months of neo-adjuvant chemotherapy. I had TNBC in my right breast with 3 nodes involved on the same side. My pathology report said I had clear margins and a complete pathological response 🙏 I have now been given the option of skipping radiation if I want to. A new study (B-51 study) published last year found that patients with complete pathological response to chemotherapy and a double mastectomy don’t benefit from radiation therapy. My question is has anyone skipped radiation or was given the opportunity to skip it and chose not to? Also, has anyone with a double mastectomy and DIEP done radiation and what were the side effects on the breast? Lastly, has anyone received radiation in the neck region and what were the side effects like? Difficulty swallowing? My radiation specialist suggested if I choose to go ahead with radiation she would recommend the sub-clavicle nodes in the neck (along with breast and armpit) as they’re the only nodes I have not checked surgically. Would be keen to hear anyone’s opinion or lived experience. Thanks 😊Abemaciclib Verezenio side effects
Hi Ladies, I have recently started on Letrizole/Hormone Therapy, and Verenio / Abemaciclib and am struggling with the side effects. I am in the fortunate position in that both these drugs are being given as a preventative measure. I don’t have Mets, but am at very high risk of re-occurrence. Originally diagnosed with bi-lateral early breast cancer back in March 2023. Had a small 1cm triple negative tumour, and a larger (5cm), more aggressive (grade 3) oestrogen positive tumour with lymph node involvement. After initial breast reduction to remove both tumours and additional auxiliary clearance, I had 6 months of chemo, plus radiotherapy to both breasts. I managed to keep fairly positive throughout these treatments, and while at time a struggle did manage to work albeit at reduced pace throughout. Just as I finished radiotherapy my oncologist recommended abemaciclibb as part of a trial that is showing reduction in recurrence rates of around 6%. I’ve only been on these for 5 weeks, and while the side effects are manageable, they are not a lot of fun - diarrhoea, fatigue, vertigo, and just generally feeling unwell. Hot flushes and insomnia with the hormone therapy which again are manageable and on their own no big deal, but the combination has me exhausted. I was soooooo looking forward to end of my active treatment and getting some energy back, getting back to working full time aswell, but now with two years ahead of me on this regime, I am wondering if it is worth it. Oncologists reluctant to reduce dosage and are keen for me to stay on the Abemaciclib, but I’d love to hear from anyone else is in a similar position and how you are managing the pros and cons of the treatment options versus quality of life, and from anyone who’s been on Abemaciclib for a while to know if side effects improve over time. Thanks Jenni
