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.
Neuropathy in feet - any advice? TNBC
Hi everyone I've TNBC and am 6 treatments down with the first Carbo/Taxel/immunotherapy regime. For part of my infusions, they put cold gloves on my hands to reduce the risk of neuropathy there, but didn't offer anything for the feet. They suggested I go online and purchase my own cold socks to wear during treatment. Last week my toes started feeling numb and then yesterday my heels started feeling sore when I walked. I walked a bit at the shops this morning and my feet felt odd the whole time. I'm assuming this is all related to neuropathy and I must admit I'm a little freaked out. I've purchased some cold socks now online and will start wearing them during treatment, but I'm worried what damage has been done already. Be interested to hear what experiences others have had with this, what they've done about it and whether it has resolved after treatment finishes. (NB I'm putting this in the general discussion arena as I thought it may not be simply TNBC related?) Kathy
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.
Starting chemo this week: Doxorubicin, Cyclophosphamide and Pegfilgrastim then Paclitaxel
Hello everyone, this week I start chemo. As I understand it, 4 cycles of Doxorubicin, Cyclophosphamide and Pegfilgrastim then 12 cycles of Paclitaxel. I am looking for any advice and tips on how to get through it. We all know that experience and side effects are all different and individual but it would help to know how others have coped. I haven't had my introduction session with the oncology nurse yet and the fact sheet is a bit scary. I am in Melbourne and will be treated at St Vincent's private in East Melbourne as that is where my medical oncologist works. For the time being I am remaining a private patient as insurance covers it. I am choosing to try the 'cold cap' to see if it will help with not losing hair but as I have fine hair and already experiencing age related hair loss, it may not work. I know it will add about 2 hours to treatment and am willing to give it a go. My plan is to take audiobooks and colouring books with me to pass the time during treatment. I'm aiming to keep busy but not taxing myself too much. At this stage I do not plan to work on treatment days but do plan to work from home other days. A friend has suggested a probiotic as a precaution as a relation and her mother used one during their chemo and found it helpful. Has anyone else found this? With the second treatment and Paclitaxel I am concerned about the possibility of peripheral neuropathy side effects due to a previous condition. I read in another post that some ladies have tried cold gloves and socks - has that worked? I will have to look into it further but am curious and want to be prepared. Thank you all for reading and any advice and tips :heart:
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 appreciatedBYO Cold Cap?
Hi all, I have just found out that my hospital (Monash) doesn’t offer the cold cap for chemo. The breast care nurse I spoke to was very disparaging of them, saying there was no evidence they worked, which surprises me as they seem relatively common in better hospitals. She said the only option was to BYO frozen caps in an esky - has anyone here tried this? Was it successful? How do you keep the caps cold enough?