Struggling with Tamoxifen side effects
Hi All , My name is Christine, I have been on Tamoxifen now for 2 years and have always struggled with the side effects of Tamoxifen...I get them all! I have had 1 breast removed after being diagnosed for a second time with breast cancer 2 years ago.The first time 10 years ago I underwent radiotherapy ... I'm 48 yrs old. I am struggling with: Hot flushes Aching legs Struggle to keep weight off no matter how much exercise i do moodiness loss of libido fuzzy headaches generally changed me to feeling crap daily Interrupted sleeping patterns Constantly going to toilet I have spoken to my doctor who suggested anti-depressants which helps with the hot flushes but i am reluctant to take them due to other side effects. I have suggested stopping Tamoxifen to my doctor who advised it would reduce my life span by 2-3%. I have a friend in a similar position as mine and she stopped them with no issues to date (8 years) and is urging me to stop. Does anyone suggest alternatives or make comment if stopping Tamoxifen is irresponsible? Any help or suggestions are much appreciated. It is really affecting my life, my personality, my thinking and made me a completey different person .. I was once strong physically, mentally and spiritually ......its also affecting my husband..anything he can take?..lol Christine xxHER2+ ER+ - huge side effects
Hi I was diagnosed with HER2 positive and estrogen positive breast cancer in October 24 Am having chemo / Herceptin - perjeta weekly until 20/1 then prob surgery end of February. As I’m older 73 am so worried about survival rates and if the treatment will work I’ve had no ultrasound or anything to see if the tumour has reduced and I have a satellite cell next yo my tumour - multi 3 breast cancer it’s been terrifying to say the least and still in shock and have had huge side effects - numbness - chemo rash and sores all over my body / hair loss despite having the gold hat and diarrhoea
brain fog post chemo treatment
Hi All Just a question about brain fog and how long people experience this after chemo treatment has stopped. I finished chemo about 5 weeks ago and am in my last week of radiation. I expected to have a clearer mind by now. Just wondering about other people's experience with brain fog post treatment. thxs fiona
Are you experiencing pain following treatment?
Register for the Persistent pain, addressing quality of life webcast on Wednesday 7 February, 7pm - 8.15pm AEDT. Register now (and if you miss it, we will email you the recording) This webcast will address types of persistent pain associated with early breast cancer treatments, strategies to manage pain and further resources and support that may be available to you. We will be joined by three experts on the night, Professor Paul Glare, Pain Medicine Specialist, Dr Charlotte Tottman, Clinical Psychologist and Naveena Nekkalapudi, BCNA Consumer Representative. Naveena will be sharing her experiences of persistent body pain and why quality of life is paramount to her. You will have the opportunity to put forward your questions when you register or during the event. For more information about the webcast and speakers, and to register, please visit https://www.bcna.org.au/event-directory/webcasts/persistent-pain-after-breast-cancer/ Please feel free to pop any questions below in the comments or get in touch with the events team via events@bcna.org.au. We look forward to seeing you there!
Do I take Letrozole
Hi there. I am new to this group. I have had a Grade 2 cancer removed (lymph clear) and 3 weeks of radiotherapy. The tumour was 9mm Oe+ 100% Pr+ 90% and I now have been recommended to go on Letrozole. It is sitting on the bench and I am really nervous about it. I'm post menopausal and the bone density scans are showing osteopenia already. I'm really worried about all the side effects - weight gain, osteoporosis, joint pains etc.... Has anyone else been in the same boat or do you feel that because it is recommended by the oncologist, they are the ones that know best??? I believe he said it only increases the chances of not returning by about an extra 2% (i think from memory).... so is it really worth it? Happy to hear people's thoughts pls
Ice gloves - ideas needed please
Hello ladies, I am starting chemo next week. AC (4x every fortnight) and then Taxol (12x weekly). I have been using the search and came across posts shared by @shs14 and @poodlejules about ice gloves during chemo for PN preventative measures. Have literally just placed orders to purchase socks for the feet and plan to DIY with fingers ( using ice cubes and plastic container). Unfortunately, the socks will not arrived in time for my first Chemo next week. Can anyone please help me with what other feasible DIY ideas are there for the feet. P.s. I spoke to the oncologist nurse and she said it isn’t ‘standard of care’, 😭 and no evidence it works. But if I don’t do it, I will totally regret not even trying taking preventive measures. once again, thank you in advance! xx GinTamoxifen - feeling down
I have been on Tamoxifen for a little over a month. Initially experienced period like cramps (I am 60 so forgot this feeling), tiredness & discharge which have subsided. For the last week my mood has been from being agitated to feeling low & sad then completely well balanced. Is this normal? How long will this last. Also should I just stop taking it? My cancer ended up being a grade 1 contained and all removed. I know I need to see my oncologist but wanted to know what others have done in a similar situation.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.
Feeling a failure
Does anyone know if there is a phone consult available for breast cancer mental health? I had two lumpectomies and axillary clearance due to cancer in one node in early 2019. Then rads. Then hormone blockers. Started on Anastrozole, then Tamoxifen, then Exemestane, the Letrozole. All had such bad side effects I was taken off them. My liver went mad. I had such bad neuropathy I couldn’t walk or even hold a cup of tea. I had brain MRI to rule out MS. After being off them for a few days most of the neuropathy has gone except one spot on my leg. I have many other chronic conditions so pain is usual. However now I’m feeling better, I’m starting to regret not keeping on them. I know I can’t have them, but it’s making me feel like I should have persisted even if I needed help going to the loo and eating. Off them I can go walking, shopping, visiting, cooking, etc. I certainly am more healthy physically without them and I tell myself being active should help stop recurrence more than just sitting on the lounge or lying in bed. But my mind is telling me I failed. I should have tried harder. Has anyone else gone through this? I know I can get a mental health care plan but I really want to talk to someone who understands breast cancer, or any cancer actually. Any ideas?
