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 😊
Questions to ask 'Post Surgery' of yourself - to your Specialists - Tick Sheets - Self assessment
I know that after my own surgery, I didn't always quite know what questions to ask of my surgeon and 'the team' that we all see regularly for the first 5 years following our treatment - so I set about looking for 'tick sheets' that would help me, as these appointments approached! I came across some really interesting files. They are all 'multi paged' so I've put a 'sample page' from each document to give you an idea of what is in it. The first booklet is available at most Cancer Clinics and was put out by the Cancer Council - 'Living Well After Cancer'. It is a good one to give to friends & relatives to read as well - to give them an idea of the longterm affects of cancer even after successful treatment - as they often think that once you've had your surgery, chemo, rads & tabs - that you are now 'well'. We all know that that is NOT necessarily the case! :( It really is a lifetime sentence. This booklet covers a lot of areas that concern us all - and may be able to help answer questions in many situations that we face. (sample page) The 2nd one is: "Questions to ask 'post cancer' " - a 'tick sheet' - these questions could be spread across the whole team - your surgeon, Onc and Rad Onc as well as GP. Tick the ones that are relevant to you in the lead up to your individual appointments. (sample page) The next is "Self Care Specific Symptoms" - this sheet could also be for any of your team - with the 2nd section relating more to mental health issues that may impact you. (sample sheet) And finally - a Survivorship Care Plan - virtually a ''Self Assessment Yearly Checkup'' sheet .... which has more specific symptoms that you may be concerned about and also has pages for noting yearly checkups required re Dexa, Mammograms, Colonoscopy, MRI etc - almost a 'diary' to keep re future appointments. (sample Pages) Write down the dates you've had them, and when the next one is. Add any other exams that are not already there You can use any or all of these documents to track how you feel you are progressing - date them & further down the track, you can compare them to see how you are travelling. Take care & I hope these sheets help in tracking your health - both mental and physical. xxx
Post chemo hair ....everywhere!!
So my hair is growing back with a vengeance, but not just on my head. My face is unbelievably hairy - thankfully white so not too obvious, but it’s on my cheeks, chin even my nose has little fine white hairs. So, if others have experienced thus, what did you use to get rid of it?
Black nail polish for chemo
Hello all, I am about to have my 3rd round of TC in 2 days time. I noticed that 4 of my fingers have darken a bit. During the last 2 sessions, I did have my fingers painted with black nail polish. Would anyone know the main purpose of black nail polish, is it for blocking out UV rays during summer? Since it's winter now and I don't do out much, should I still continue painting my nails with black nail polish? Or is nail strengthener good enough? Thanks.
Heart aflutter again.
I just spent the day in hospital with a heart flutter. I am on beta blockers, as it happened about March last year too. Not sure if it is my age or a follow on from the 2016 chemo but it is annoying to have what is basically 2 heart rhythms working against each other. The doc said a second rhythm can start and it says, 'I can get there faster' and takes over. The old rhythm says, 'no way', and they fight. I took extra beta blockers and it slowed both beats down until one gave up and went back to sleep. Hospital just had to keep an eye on me and monitor and it eventually settled down and came good and they released me. I have an appointment with my GP tomorrow who I imagine will either increase the dose rate or try me on another type. https://www.healthline.com/health/living-with-atrial-fibrillation/paroxysmal#progression
Trodelvy - any info to share?
Hi, I am reaching out to see if anyone else has commenced Trodelvy chemotherapy and if yes, what are your side effects experiences. I am only in 1st cycle, 2 weeks on/1 week off. Main reaction has been some insomnia and bad fatigue. Wondering about hair loss and at what stage, if anyone has experienced this? Does fatigue get worse? Any other lurking side effects to be aware of?
More research needed into side-effects of chemo and hormone therapy
In our BCNA network, many members report unexpected, painful and ongoing side-effects during and after chemotherapy and hormone therapy; for example in a recent discussion on ‘hormone therapy and tendon issues’. Sometimes treating medical staff seem to be unsure about causes and best treatment for side-effects. I read a study 'Incidence and severity of self-reported chemotherapy side-effects in routine care' (https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0184360#sec013 ) This study reports that knowledge about side-effects comes largely from clinical trials. There is little evidence coming from normal clinical care. In this study 449 people with breast, lung or bowel cancer were interviewed and asked questions about their side-effects. The study found that “3/4 of individuals undergoing chemotherapy in NSW will experience multiple side-effects during their treatment, and for over 60% this will include a serious side-effect.” The study found that side-effects were similar across the three cancer types. The authors suggest that “this information is useful for both clinicians and policy makers, who typically make treatment and funding decisions for standard practice, but often on the basis of potentially unrealistic clinical trials. This work also confirms the need for side effects to be collected using patient-reported methods, to be monitored throughout chemotherapy treatment, and highlights the importance of observational data in providing information for decision-makers that is relevant to the clinical practice setting.” Have a look at this study; it is very interesting and readable, and brings up lots of questions and ideas. Although this study is about chemo side-effects, and does not include hormone therapy side-effects; I am thinking that a similar study is needed to measure hormone therapy side-effects in the real world.
New member - Question re oral chemotherapy capecitabine
Original post created by member @Brondocs - moved to Metastatic breast cancer discussions Hello, I am a new member and appreciate so much hearing everyone’s stories. In May 2018, I was at work and as I brushed some fluff off my shirt I felt a golf ball sized lump on my chest. This turned out to be triple negative breast cancer and the lump had literally popped up overnight. I know this because I am small breasted and would have noticed if it had been there before. Within two weeks I was in surgery for a lumpectomy which was the easiest part of the whole process. The cancer had not spread to my lymph glands so I felt lucky. I then started 6 months of chemo. For the first four months of the heavy going chemo I was sicker than I ever imagined from the side effects. I ended up staying in hospital each time. But after that, when I went to once a week lighter chemo, I was managing pretty well. I was also part of an exercise physio research program which really helped me feel as If I had one thing to help me through. Then I had a month of radiotherapy – which was fine. THEN I had two years of great health until February this year when I developed a recurrent cough. I thought it was some sort of asthma, so I went to my GP who send me for a chest Xray. I was completely shocked to find out I had metastatic cancer all through my lungs, in my brain and in my neck. I had a week’s radiotherapy on my brain which had horrible side effects ( nausea, headaches, hair loss) combined with starting the heavy going chemo for the next 6 months. Again, I had terrible side effects – mainly trouble breathing, dizziness, exhaustion and clotting in my arms for the first four months, so spend more time back in hospital. My oncologist has moved me now onto an oral chemotherapy- capecitabine. I was wondering if anyone else was taking this and if the exhaustion from the 6 months of strong chemo infusions will dissipate or persist ? I haven’t had any additional side effects so far. My insomnia is also persisting and quite a few of the other side effects from the infusions. Any advice or info much appreciated !
Trying to get through the journey of growing my hair back
Hi all I am 6 months post chemo and I have hair, which I'm very happy about, however I am struggling with what to do with it. I used to have long brunette hair that I straightened every day (it had a natural annoying wave) and now it's grey and really course and quite curly. I got a hair dresser to put a bit of colour in it on Thursday and, to cut a long story short, I didn't like it and because I had a night out planned last night I decided to rectify things myself. Not a good decision! I proceed to turn my hair yellow, then green, then orange. I then had to resort to using an old brunette hair dye I had at home and now I've gotten rid of my lovely textured grey colour and am a solid blocky brunette. I'm 44 so am not yet ready to be grey, however, everyone loves the colour and I guess I kinda liked it too. I now don't know what to do. I miss my old hair, I hate not knowing where I'm supposed to go with my hair style. I'm looking to get some advice from a really good colourist although have to wait 4 weeks to get in to see her! My hair was my crowning glory and now it feels like a dear old friend who I can't connect with anymore. I'd love to hear some stories of hair growth such as, did the texture change and gone back to normal after some time? Please share any nightmare attempts at colours/styles to make me feel better about myself too. Thank you!
