Struggling through Chemo
Hi all, My nurse has just introduced me to this group. I’m hoping to connect and share my story and hopefully somehow feel better. After being diagnosed and a short time later having a mastectomy and all lymph nodes removed, chemo started just before Christmas and I am struggling with it! Ive got another 2 months of chemo before 5 weeks of Radiation…… would love to hear other stories. I have a fantastic support group of family, friends and colleagues but they just can’t possibly understand what I’m going through. Looking forward to connecting 😊
Feeling scared and just a bit angry
Hi, I'm Karen, 61yo, from Victoria. I was diagnosed in September, my birthday actually, I was numb. I had been dealing with a very coercive relationship, narcissism, gaslighting the lot, to be told this news was just too much, I had all sorts going through my head, How do I tell my children? How do I do this? Why me? Everything was so hard to process and even now I'm struggling. I was told it was an Oestrogen based cancer, sorry I cant remember much of that conversation, but 2 Biopsies, the first one they biopsied the wrong lymph node, Pet scan, M.R.I and blood test later to be told sorry its not good news, well having a lump in the breast isnt good news anyway but, I had my right breast and Lymph nodes removed, then to be told its bad news I'm so sorry was another kick in the guts, 35 of my 36 nodes were affected, so onto another more thorough Pet scan, blood test and M.R.I, To get the good news that it wasn't anywhere else in my body. Now I'm preparing for Chemo to start on the 2nd of Jan and I'm absolutely terrified, I have no emotional or any other support at home, even though I'm told everyday that he cares, they say actions speak louder than words well Im yet to see any, my son who is my heart, doesn't know how to deal with this and neither do I. They have just had an Eptopic pregnancy and I'm hurting for them, we were all so excited and happy. I don't know what to do or how I'm going to do it, my living situation is so toxic to my mental health and is impacting on my son and daughter-in-law as well. My partner is trying to get me out of the house and that is something I can't deal with at the moment as I'm trying to deal with being there for my son and daughter-in-law and Chemo, I feel like I'm rambling, my life is a mess, I just don't know what to do. Sorry for the rambling talk I'm not very good at putting things on paper, everything is very disjointed.
Scared about the side effects of treatment
Hello everyone, I'm 35 with two young girls- I was initially diagnosed with LCIS just after a routine scan- but after my mastectomy surgery 2 weeks ago, the pathology has come back that I have HER2+ estrogen and progesterone + Lobular carcinoma, but thankfully no spread. It was a real shock as I was not expecting this news, thinking I would only have to have the mastectomy and that would be it. I am starting chemo, immunotherapy and hormone therapy in a few weeks. After what I thought was going to be a relatively straight forward recovery after my mastectomy and 6 weeks off work the oncologist said I am now looking at 6+ months off due to the upcoming treatment. I am feeling a bit overwhelmed and sacred about the effects of the upcoming treatment on my overall quality of life (and caring for 2 young children!). I will likely lose my hair with the chemo- the oncologist mentioned I could try the cold cap therapy- for those that have had it has it made a significant difference (the Dr said it takes a long time each chemo session to put on and off!)? I would also appreciate any insight into how to approach looking for some counselling support as well- would it be best to go through a GP or...? Thank you for reading, I'm so glad there is a support network like this available- I feel very alone so far. xxYoung mum diagnosed IDC and DCIS.
Hello! Im 37 and was recently diagnosed in November with early breast cancer - IDC (ER+, PR+, Her2-) and then following my surgery they also discovered DCIS. Plan is chemotherapy starting tomorrow and then mastectomy/recon 4-6 weeks post surgery! Looking for advice on: 1. What to take with me to chemotherapy tomorrow (will be there approx 5 hours as will be trying scalp cooling). Also what do people wear when using ice gloves/boots/cold cap? 2. Any advice on TC chemo and how you tolerated it (I’m doing 4 cycles). 3. Any tips on managing chemotherapy with 3 children aged between 3-7yrs and a husband who works long hours but very supportive. Thanks so much!
Update
Hi all, It's been a while since I post something. A lot has occurred since the last time I post something. Unfortunately, I was not doing well with the weekly chemo and Immunotherapy treatment. Spend all Easter break in hospital due to infection, I became hypersensitive to needles and got a PICC Line inserted which lasted only for a few weeks as it got infected, and it had to be removed, my oncologist decided to insert a Port (which has been the best thing). I also became sensitive to all the dressing that they used on me, my skin was breaking down. I ended up in ICU due to my blood pressure going low. It seemed that after my weekly treatment my husband had to rush me to the emergency department in the evening due to high temperature and rapid heart rate. This went on for 3 weeks in May, my last admission was the worse one, my temperature wouldn't go down, ended up being septicemia, required blood transfusion, my liver functions weren't great at all. The levels were tripled. My oncologist started getting worried and ceased the chemo and immunotherapy treatment and decided to bring the surgery forward. Unfortunately, the lump in my breast hadn't decrease in size as the surgeon expected and the lymph node that was cancerous had increase in size. My plan was to have both breasts removed and then do the reconstruction at the same time, due to my liver function and current health status, my surgeon and oncologist decided to just remove the right breast and have the other breast remove and reconstruction done at a later time. I was deflated with that news, eventually I accepted it. I had my mastectomy to my right breast on May 31st. He also removed 10 Lymph Nodes (Which only one of them had the cancer). Three weeks ago, I started Radiation, and I have completed this on Tuesday (13/08/24). I see my oncologist next Tuesday (20/08/24) and he is going to restart me back on chemo, but the oral form. I am not sure for how long and if the side effects for the oral chemo is the same as the IV one. My plastic surgeon has placed me on waiting list at the Royal Melbourne Hospital for the surgery/reconstruction. I have accepted the way I look now.
Chemo tips / hacks?
Hi, lovely ladies is update from me I done my pet scan and have good results and I got a call from my day oncologist today and they already set my treatment dates. Starting next week with paclitaxel weekly for 12 around and carboplatin. Pertuzumab,trastuzumab three weekly so 4 round Is there anything I have to bring during the chemo? And do any of you have or had any similar treatment like mine ? I’m her2 positive Any tips or hacks for the chemo side effect? I’m very nervous and have no idea of what to expect so any guidance is appreciated
First 4 cycles of AC/DC done. One step at the time makes me feel like a Winner.
Hi All, Hope everyone is doing great here and managing the side effects well. I completed my 4 cycles of the AC/Dc combo package and will start with the 12 cycles of weekly taxol from mid September. Luckily for me the red devil was not too bad apart from I have lost complete taste Nd my hair is gone . The nausea and minor reflux issues were managed well with medication and fatigue was also ok for me. I was constipated though and needed coloxyl. Can you all share your experiences with taxol. I can make a list of what to expect and atleast be mentally prepared. I am returning to part time work from 1st October and hoping to get some experiences as how work can be managed? The support and stories give a lot of encouragement 🙂 Thanks Priya
Newly diagnosed - Triple Negative - Chemo underway - Family history
Hi everyone, Well this is the group you really don't want to join, but it appears to be a great resource and source of support, so here goes. I was diagnosed with a triple negative tumour in my left breast on 9th May (grade 3), following a biopsy. I count myself lucky in that I have been part of a High Risk Breast Cancer Clinic at RNS Hospital since 2018, when I found I had the BRCA2 gene mutation. I have a strong family history of breast cancer, with my father having breast cancer at 64 and ultimately passing away at 68 from secondary cancers (way too early - he thought he could massage away the lump). His mother had breast cancer as well and my mother had ductal breast cancer in her 70's. So the annual mammograms, MRIs and ultrasounds since 2018 may have been a nuisance, but they picked up this cancer. I knew something was up when they did the mammogram and kept on calling me back into change again for another scan and then bringing forward the ultrasound appointment, where they did the biopsy. I am going to remember the call I received from the breast specialist's office saying that I needed to come and see the specialist "today" - no delay. I burst into tears and knew straightaway. I'm ahead of my parents in having been diagnosed at 59 - thinking of postponing my big family celebration weekend away in late July until after all this! Quickly into an oncologist and the treatment plan set up within a week. Because of the triple negative category, I'm starting with 6 months of chemo - first 3 months weekly sessions of Pembrolizumab ('the' new immunotherapy drug my oncologist says has only been approved in the last few months), Paclitaxel and Carboplatin - then 3 months of 3 weekly cycles of Pembro, Doxorubicin and Cyclophosphamide. Following that, they hope the tumour will have shrunk and they will then do surgery to remove the remainder - with the decision then on a lumpectomy or mastectomy. Radiation is a possibility after that. My twin sister (same genes of course) had a double mastectomy as soon as she found out we had the BRCA2 gene in 2018 and her initial reaction was to 'get them off' - but I'm following the treatment plan suggested - and I think a bit grateful I don't need to make that decision yet. I am down 2 weeks of chemo. The side effects I've experienced so far are the usual fatigue (have been trying to work in mornings, but I'm quickly realising that's even hard), inability to sleep the first few nights (the steroids I understand), yukky mouth sensation, slight nausea in morning with cooking smells, some slight rash spots on face - and the worst, the bloating/constipation (I won't share the details but I'm quickly realising I need to change up diet and liquids). I don't have any great questions just yet, but look forward to interacting with you all in the future and thank you in anticipation. Sorry for the essay. KathyBleeding Gums
Hello lovely ladies! It’s me again!🤭 I’ve tried searching for bleeding gums but can’t find much information on it. I have switched to baby toothbrush but my gums are not liking it. it bleeds! I am using cold water (with ice) to stop the bleed after I gently brush my teeth. I also rinsed with warm salt water. I am using the MooGoo toothpaste which is very gentle as well. I also have biotene mouthwash. My oncologist says to see a dentist only after 3 months…any doesn’t have any solutions as it’s due to chemo…. so wondering if any of you ladies had this experience? And when will it get better🥵? P.s. have just completed 15 rounds of chemo (4 dense dose of AC and 11 weekly taxols- had to skip taxol 12 due to neuropathy getting out of control). Any ladies going through chemo, happy for you to ask me any questions. 💝💝💝 Gin
hit me with your go to question for the chemo dr's
So surgery done and dusted 2 weeks a go now (8.11.2023), lumpectomy completed with 2 cancers being removed from the left breast, as well as all 27 lymph nodes, with only 1 cancer found in that, however the cancer had shown signs they had got it in the nick of time as it was showing signs of spreading out shoots to other nodes was what my surgeon told me this week on getting my results back from pathology from the surgery, so after 3 months of tests and chasing everything, that part is over, now onto oncology I go, and while this isn't my 1st rodeo with breast cancer, but its my 1st time with chemo, and having no lymph nodes!! Last surgery I did dodge that one, but not this time, I've been doing everything in power to get mentally prepared for it, or so I thought till they called today, to go over my appointment, this coming Monday at 9.45am. The nurse said to bring all my questions with me, so I've been compiling a list, as as you can see its now close to midnight, so I'm clearly not sleeping - just lying there thinking about all these things, in fact since that phone call I've been feeling rather flat and upset, even though I knew it was coming, it still didn't stop the tears. and well I'm a bit taken back on my reaction to how I took it all, as I thought it was going to be a walk in the park as I knew it was coming, but clearly not. So what are some question you think would be helpful to add to my list, I have the normal ones, How long will my treatment be 3-6 months? (the nurse did say it was a short treatment they were looking at for me, I had no idea short was 3-6 months, I was expecting less.) How many time a month/week etc will I need to attend the hospital for these appointments? How long will the appointment session take each time I come? Am I ok to drive myself in and out for these sessions? Side effects? although I'm sure they will give me all that. any extra help in questions to ask would be wonderful. I'm a bit numb at the moment, mentally and physically, my boob is killing me and still swollen, my arm is a pain to lift up, my side isn't that happy with the dressing on it from the drain being taken out on Tuesday just been, so I sound like a bag of misery at the moment. Thanks all :smile: