Woohoo .... I signed off with my Onc yesterday
It is nearly 8 years since my lump was discovered in Oct 2017, Biopsy in Dec, Surgery in mid Jan 2018 .... 4 weeks of radiation & just over 7 years of Hormone Suppressing tablets .... and I am now officially FINISHED with my treatment! I have officially been 'signed off' by my Onc! Back in 2018, I originally started with a male Onc - who didn't really have any interest in treating me - his first question was "Well, what are you here for?" (He hadn't even looked at my diagnosis/surgery/Radiation history!) Then he didn't believe me when I told him of my horrible side effects from the first AI that I was put on! So when he went on leave & I was lucky enough to see his Locum (a lovely Sth American Onc.) She immediately changed me to another AI (after a break of a few weeks) and 6 months later, to a third AI, that I then remained on for the next 7 years! I also swapped over to her at that appointment, and have been with her ever since - she was also my husband's Onc! So never be afraid to ask about changing from one AI to another if you are experiencing nasty side effects. And if you don't 'get on' with your Onc .... consider changing them too!!! š It is SUCH a nice feeling! I thought I may become a bit emotional, but I was surprisingly cool, calm & collected!! My Onc even gave me a big hug & sent me on my way, wishing me all the best! She also said to Stay away from the Regional BreastScreen Buses and continue having my yearly mammogram and ultrasound at the facility that I've been attending for over 7 years now .... I have 100% faith in them. Their specialist Breast Cancer Ultrasound operator is the BEST - and I've been able to request her on all my visits so far & will continue to request her on my upcoming scans! hehe, I also had to confess to her that I had started weaning myself off the AIs from about Xmas .... as I was going to WA in May/June for a big Kayak Fishing Adventure ... and I wanted to be totally 'pain free' for that - and she said WELL DONE!! (Technically, I should have stopped taking them after 5 years, but I had requested to stay on a bit longer for the extra 18 months as 'backup'!) At the time, she said there was no medical proof to show that an extra 2 years would either benefit or hinder me - so said I could. So, I was not surprised when she was not at all concerned that I had finished a bit earlier. š (But I'd like to point out that you REALLY SHOULD discuss any change in taking your meds with your Onc before doing so!) I also left her with some information on the Otis Foundation, to pass on to the local Breast Care Nurse - Otis is a wonderful philanthropic organisation that organises the use of various Holiday Houses (donated by members of the public, many of whom have had family members with BC.) There are 'retreats' (as they are called) all around the country and they are made available from a few days to a week, to Breast Cancer patients for no fee. You just have to 'get there' and bring your food with you. All bedding etc is supplied. Some places are pet friendly - most aren't! You can also take family members and friends with you for the well deserved break. Your Onc/Breast Care Nurse/GP just needs to sign a form saying you are 'up to it'! Jump onto this site & check them out. There is usually a waiting period for some of the more popular ones (most are not available in school holidays) so the earlier you contact them to see if you can book one in ... the better! Give it a go! https://www.otisfoundation.org.au/donated-properties I also gave her a bunch of cards/brochures regarding a wonderful Victorian initiative (called Mending Casts) that runs 3 day Fly Fishing Retreats (once again at no cost) for women with Breast Cancer called Casting for Recovery.(They have recently extended it to women with ANY cancer!) They also have retreats for Men with Cancer too (called Reel Recovery.) Pretty well everyone running the program have been personally touched by cancer at one stage or another (by way of family members or friends) and they just love 'giving back' ... putting a smile on the dial - whether fish are caught, or not! You don't have to come from a fishing background to attend ... they supply all the equipment & show you how to use it (and fly casting is a gentle form of arm exercise too!).... and often there is a Look Good, Feel Better session as well (where you are shown how to use make-up effectively, and scarves to create a 'special look' whilst going thru/recovering from chemo) and a couple of chat groups, to discuss your journey so far - with those who've been thru it themselves, so they 'get it'!! They have a BC psychologist attending and also a couple of Paramedics who are qualified counsellors. I attended a retreat a couple of years back & it was just terrific. A few friends (and one husband) have also attended in the last 2 years and found it very therapeutic. I am still in touch with a few of the girls on my retreat! You don't have to live in Vic to attend ..... l drove down from NSW, visiting friends along the way, both down & back, so turned it into a 2 week road trip, fishing all along the way! Canberra has their own group ... but I think that Vic is the only other state doing the program just now. I would encourage everyone to 'give it a go' when you are well enough to attend!! All the info on the retreats can be found here. https://www.mendingcasts.org/casting-for-recovery-retreats-vic Even tho I've finished all my treatment, I'll still hang around on here .... š Take care, & definitely consider checking out the above to 'retreats'!! Cos you DESERVE IT!
TDM1 - what to expect
Hi, Am post neoadjjuvant therapy, mastectomy and ALND for 2 separate tumours, one HER2+ and the other HER2-, both estrogen and progesterone positive. 1 lymph node positive. I had near complete response to treatment (<1%) and a tiny mass still in the lymph node. Recommendation is to switch from Herceptin to TDM1. I see the oncologist on Monday for further information and to start this new drug. Any experience with side effects and what to expect would be appreciated. Although I know they do this for any residual disease, there was so little that you do start to question the need. So would appreciate both good and bad view just to get myself prepared. On another note, my breast surgeon discussed CTK4/6 with an AI. This was not even on my radar. I will find out more on Monday but very curious and like to have knowledge to make the best choices. Love to hear from anyone who has experience in these treatments. Best wishes to you all.Subsidy for Verzenio (abemaciclib) expanded on the PBS
Hi everyone, I thought some of you may be interested to read about the recent expansion of the Pharmaceutical Benefits Scheme (PBS) listing of Verzenio (abemaciclib) to include its use in combination with Faslodex (fulvestrant). You can read the full details on the BCNA website link below: https://www.bcna.org.au/news/2021/10/subsidy-for-verzenio-abemaciclib-expanded-on-the-pbs/ We recommend talking to your treatment team if you have any questions about abemaciclib or fulvestrant. (This has also been posted in private group 'Living with metastatic breast cancer')
New trial
The technology that created the Oxford-AstraZeneca vaccine is being used to develop a jab that could help treat cancer. Scientists from the University of Oxford and the Ludwig Institute for Cancer Research have developed a two-dose vaccine which they believe can target tumours in humans. When tested on mice, the jab increased the levels of anti-tumour CD8+T cells which attack the growths, greater reducing its size and increasing survival rates. It also resulted in an enhanced response to anti-PD-1 immunotherapy - turning a personās own immune system against a tumour - which is often ineffective as some patients have low levels of the T-cells required. The team created the cancer vaccine with two different prime and boost viral vectors, one of which was used in the development of the Covid jab. To ensure the new vaccine targeted cancer cells specifically, it was designed to seek out too MAGE-type proteins that are present on the surface of the cells. The first human clinical trial will take place later this year, with the jab being trialled on 80 patients with non-small cell lung cancer. Benoit Van den Eynde, of the Ludwig Institute for Cancer Research, said: āWe knew from our previous research that MAGE-type proteins act like red flags on the surface of cancer cells to attract immune cells that destroy tumours. āMAGE proteins have an advantage over other cancer antigens as vaccine targets since they are present on a wide range of tumour types. This broadens the potential benefit of this approach to people with many different types of cancer. āImportantly for target specificity, MAGE-type antigens are not present on the surface of normal tissues, which reduces the risk of side-effects caused by the immune system attacking healthy cells.ā
TERRIFIED of Treatment
Iām not sure I can convey in writing how terrified I am Iām not sure there is a word to describe it the worry I feel is debilitating, I already suffer from anxiety and this is just exasperating it, i was diagnosed about a month ago and have had a Lumpectomy with good results margins were clear and lymph nodes were clear, my cancer is triple negative and they are still wanting me to have chemo and radiation. The plan is 12 weekly doses of chemo then about 15-20 treatments of radiation along with Herceptin every 3 weeks for a year. I am supposed to go to Hospital on Tuesday for Echocardiogram, Port Insertion and my first chemo. Everday for the last two weeks I have woken up at 6am in what I think is a panic attack I have tingles all over my body and shaking and I donāt want to get out of bed Iām at a point where I donāt think Iām going to be able to get myself to the hospital on Tuesday, and on top of all this I live in Melbourne so we have COVID to deal with which means no one can come to hospital with me I have to do this alone. I am terrified of having the port put in and the thought of it being in my body for so long is terrifying to me I am also completely terrified of the chemo and all the worry it will cause me between treatments having to monitor temperature etc etc will be so stressful for me. I have tried conveying this to various people (Doctors, Family, Psycologist) and all they say is you have to do this and take one step at a time, I feel like no one is really grasping how terrified I am and no one is helping me with the mental side of this, am I the only one that feels this way please HELP me as I donāt think I can mentally survive this and am seriously considering not going on Tuesday.
Treatment decisions
Hi everyone! I was diagnosed with early stage, grade 3, ER/PR+ breast cancer in early April shortly after my 28th birthday. I had a lumpectomy early May and it came back with clear margins and clear lymph nodes (but not without a good infection and some extra fun in hospital!) I'm currently in consult with my team on my next stage of treatment. Radiation is a given and I'm yet to see my medical oncologist but chemotherapy seems to be highly recommended for me but ultimately it's a decision I must make myself. I'd love to hear other people's decision making processes in a situation like this and the reasons why you may or may not have gone down that route? Stay strong xDexamethasone
Whoāda thought? Good old dexa may be one of the first effective treatments for those seriously affected by COVID-19. I was one of those who jettisoned the steroids after some obligatory dosing with A/C, as I had no nausea and dexamethasone with Taxol wrecked my carefully honed anti-constipation regime! Delighted to know it may also be useful in the fight against the virus. Possibly the only good thing about a pandemic is we will make all sorts of medical discoveries.
Ointments/Treatments for Mastectomy scar healing
Hi there, This is my first post, although I have read many different discussions. Thank you to all of you women who have gone before me on this journey and given such valuable, important advice, tips and tricks. To those women who have posted their photos, thank you for being so courageous and vulnerable, such big hearts, all of you. I will one day soon post mine to contribute to the collective, in the hope to help other women who come after me. I had my bilateral mastectomy on 6 May (now 3 weeks post), and am looking for your wisdom on ointments or treatments for scar healing. When did you start applying it? Thank you once again, Meghan x
