Breast Cancer Now Forum

Had my follow-up oncology appointment - just a check on how the radiotherapy went (very well, only the slightest of redness and a little fatigue) and how tamoxifen is going (getting a bit itchy, so giving it a break for a week, then back on to see if it's that that's causing it - may need to switch to another brand if so - apparently well known that the non-active ingredients from some manufacturers can cause problems).   Not expecting to see the oncologist for another 5 years!  Should be seeing the surgeon in a few months though, for her follow-up. ... View more

Whoops - link went wonky.  It's this: https://cystaract.wordpress.com/2015/10/24/zometa-aspirin-and-emotional-blunting/   ... View more

My follow-up appt with oncologist is middle of July.  Expecting to discuss how radiotherapy went & how tamoxifen went.  Read this blog https://cystaract.wordpress.com/2015/10/24/zometa-aspirin-and-emotional-blunting/ this week which makes me wonder if more medical treatments will be suggested - hopefully not as I am doing OK on tamoxifen (apart from some itching) and I don't want to change too much more. ... View more

I've only been taking tamoxifen for a week.  Yesterday and today my legs and chest have been incredibly itchy.  I've been scratching my legs and blaming the cat for having fleas, but there aren't any bites.  Have left my chest alone as it's just above the breast where I had my mastectomy.  Wondering if it could be the tamoxifen, but surely too soon for side effects?  Am going to start a diary of the dates and symptoms, just in case. ... View more

I've been looking into this quickly.  (I am a student and used my library access to search through research in journals.)  I've found a systematic review (the best quality of research - looks rigorously at many other studies that have been done) about therapies to support breast cancer patients.  One of the things they looked at was fatigue.   Acetyl- l -carnitine was looked at and the conclusion is that it is "not recommended for the treatment of fatigue due to lack of effect".  You can see the systematic review here: http://jncimono.oxfordjournals.org/content/2014/50/346.full   This doesn't mean that it might not work for some people - takeadeepbreath has obviously found it helpful - but there is not the scientific evidence to expect it to work for a significant proportion of people.  I won't be trying it.   I also note that it can have negative effects, reportedly worsening neuropathy (nerve problems) following chemotherapy of people with breast cancer: the original paper on this notes worsening symptoms and warns "Patients should be discouraged from using supplements without proven efficacy".  Source: http://jco.ascopubs.org/content/31/20/2627.full ... View more

@takeadeepbreath wrote: This will get rid of your fatigue - research shows 90% of cancer patients showed an improvement after just one week. It's a food supplement called Acetyl - L- carnitine wtih alphalipoic acid and you can get it on Amazon.  It boosts the energy producing part of your cells called mitochondria and also improves your cognitive function. I've been on it for weeks and it's totally banished all cancer fatigue - in fact, I have more energy than before and my mind is sharp.    That's interesting.  Do you have a reference for the research done on this?  I'd be interested to read more. ... View more

If it's unexpected bleeding, do go back and get checked.  It might be tamoxifen-related but it could be something unrelated.  Best to be safe. ... View more

Full article on beneficial impact of remaining on aromatase inhibitors for 10 years is here: http://www.nejm.org/doi/full/10.1056/NEJMoa1604700?query=featured_home ... View more

Doesn't sound clear - best to give them a ring I think.  Are you expecting a mammogram?  I'm not expecting one till next year sometime, I think. ... View more

I also had a lot of fluid draining following mastectomy (in March).  They kept the drain in for a bit longer than normal and, like you, I had a little bit of swelling afterwards, although mine settled down in a few days.  If you are concernced, do ring your breast care nurses who should be able to reassure you or see you if necessary.  It sounds like you're on the mend though x ... View more

I also felt very wobbly the first day of radio.  The first one is the worst, just becuase you don't know what's happening.  It's very straightforward and it doesn't worry me at all now. ... View more

I had a mastectomy in March.  Even though my cancer was caught early, it was in various parts of my boob so suggested immediately that I have a mastectomy with the nipple removed.  It gave me a chance to get my head around it,  and I was able to have an immediate reconstruction which hopefully has got all surgery out of the way at once.  I was so worried about pain, and didn't listen properly when my surgeon told me about the nerves being cut under my breast, so although I did feel uncomfortable afterwards, it wasn't exactly painful.   I had clear margins except against the chest wall, so I'm having radiotherapy, which might affect the implant (it's OK so far).   It's different for you - we're all different - but having a mastectomy really wasn't too traumatic for me. ... View more