More research needed into side-effects of chemo and hormone therapy

@kmakm Above all else dear lady, enjoy yourself tonight and don’t overdo things. Love Didi xxx

I am not sick because of Letrozole. I do not have chronic pain.

You have Plenty of ammunition in this thread alone, @kmakm to 'load your guns' for the questions tonight.  Good Luck.  Try & cover as many as you can - but specifically the aches & pains that continuously plagues us.  And the worrying thing is - that once we STOP the medication, how do we know we will go back to 'pre treatment status'!   I am very afraid that I will be stuck with what I have, forever - even after going off the tabs eventually!!     I hope it goes - but I fear not.

I think I can say for everyone  -  that NONE of us expected to get 24/7 sick as a result of our medications once the active treatment had finished. 

One of the main beefs that is repeated over & over re the side effects - is the inflammation that has occurred in many of our joints.  It affects us 24/7 - ie it is CHRONIC.  It affects our daily activities (unable to do them) as well as our sleeping hours (just can't!)  

This chart shows exactly how inflammation affects other parts of the body, irrelevant of where the actual 'pain' is.  Continued inflammation puts stress on every other part of the body!  It can also mask other 'symptoms', or create new ones.  Yet continual taking of anti inflammatories is also bad for the body and can lead to other major malfunctions in the body, including the need for 'uppies & downies'.

  

@kmakm It's a rude shock alright.  I just assumed that I would get "better" after all the active treatment was done.  It never even crossed my mind that this would not happen. 

@melclarity Totally agree with the "they are only there to treat you" along the guidelines.  So I am not really sure what else they can do.  This is what we have, take it or not......hopefully it gets you on our 5/10 year survival stats.  Blah.
I no longer expect anything else.  It is my choice to deal with or  tweak and manipulate the drugs  or bail out. 

What I do expect is that more study is done on how to improve these drugs that have been on the market for decades and for them to actually do something with the information that thousands and thousands of people give them.  It's not like its a minority group.  Facebook is littered with support groups specifically for people on hormone therapy.  All with the same complaints.  
The compliance rate would be far greater if we had accurate information as to what we can and can't take to help with the side effects, not the "we don't know so you better not".  For example, my best friend had an oopherectomy a few months ago for other reasons not BC. She is 44 so the early menopause thing kicked in hard and fast.  She has been taking remifen and within a week her hot flushes all but stopped.  Within a month, the mood swings were gone. 

So sick of being concerned to take this, scared to do that all "in case" it has some interaction with the HR. Jeesus I am reluctant to take vitamin C incase there is something lurking in there and I give it super powers.  Aaaaggghhhh.
There's no point if they're sitting around going "Oh yes, well we understand it sux"  but not do anything to provide accurate information and realistic every day things we can try.


 


 

@kmakm well said, that is exactly how I feel too! Dr De Boer is wonderful and yes he is my Oncologist but he has told me that exercise and diet will not stop a recurrence...though we ALL do it anyway, even when its impossible to even get out the bed everyday. I dont do much exercise I admit currently because Im too fatigued from working 5 days a week. They dont factor in any of it, there is no normality and the only way through it? is a total reassessment and adjustment to a different life a less than happy one I guess because thats the reality that they just refuse to hear. 

I think I did actually say to my Oncologist at one point, for me I was like Im starting to wonder what is the point of having been through the copious amounts of surgeries and treatment to be living this 'new normal' its not living, not really. The funny thing for me is, he's not worried about a recurrence, he's watching for a secondary...lovely!!! thanks for the optimism lol..blah blah blah...not interested. So then how will an AI benefit me?? lol thats my next question when I see him.

The hardest thing to remember is for an Oncologist this is their job, dealing with patients with Cancer, so they treat purely based on that, for them its not about the hereafter, theyre only interested in treating. 

Isnt it amazing how I know for me I can flip between being grateful and being incredibly cynical :/ thank goodness for a sense of humour!!!! 

So I just live the good life and do the best I can...and nobody but nobody knows the challenges or depths I personally get to just to work or exist...because I never speak of it. 

I know many can identify with it all. 

Yes, try exercising (or doing anything, for that matter) when it takes forever to stand up and hobble across the room.  And when just an ordinary day at work leaves you so exhausted that you have no reserves by the end of it.

@kmakm I couldn’t agree more. Family and friends expect that we will just return to normal life and taking a little pill shouldn’t be any issue just like taking a pill for blood pressure or diabetes. I was guilty of thinking this way when my own Mum was on tamoxifen after her diagnosis. She would hobble around and often struggled but I just thought she needed to “ get on with her life” it wasn’t until my own diagnosis that I realised how incredibly brave she was to go through all of the treatments that she did and I regret that she passed away before I was aware and could tell her how strong she was. At times I feel that people think I’m ungrateful for the care I have been given which is so far from the reality. Right now I’m lying in hospital wide awake at 3:47 am as a result of these treatments. While I am so incredibly aware of how lucky I am to have had access to this level of expert care, I can’t help but grieve for my old version of myself that I now know will never be back and that is ok. 
PS a while ago in a moment of boredom, I compiled a little list of the uneducated but well meaning comments that people had made. Now I can look back on it and laugh because I know that God only gives you what he knows you can handle and what doesn’t kill you make you stronger. We should all be amazon women by now lol.
Polly xoxox

@Sarnicad I'm finding that dilemma very hard to adjust to. Yes I'm alive when many aren't, but the quality of my life is so shit that a lot of the time it's hard to feel the pleasure in it.

I've pondered this a lot in the last 12 months. Having your cancer 'successfully' treated suggests that you can 'return' to good health, resume your life, go back to 'normal'. It's understandable that people who haven't had cancer (and BC in particular for us of course, though also because of its propensity to return even 15 years later) would think that way. It's understandable that we would feel that way. It is such a rude shock to arrive at this point and realise that it's massively untrue.

Positive stories about cancer survivors are mostly the ones that get the press. We read the stories about people who reassess their priorities and gloriously rebalance accordingly. We don't read stories about young to youngish (I turned 53 on Monday) people who ache 24 hours a day, whose hands and feet don't work properly, who are depressed and anxious, who have strangle prickling sensations in their ear, have desert dry vaginas, dandruff, osteoporosis etc etc etc, all because of the medication they're taking because it might stop the cancer returning.

We're encouraged to exercise, eat healthy, do something you enjoy everyday, etc. This is not especially helpful is it? It doesn't reflect the reality for most of us. That we have to work, raise kids, care for families, houses etc. Which for some, comes with side effects so debilitating that the very effort to get out of bed requires strength and courage.

In the end I'm left to conclude that it's about expectations. Somewhere along the way we've developed an expectation that being successfully treated for, being 'cured', of breast cancer, means a return to good health. For some it does, but for many it doesn't. And we end up feeling that we've been done an injustice.

Endocrine therapy seems to me to be as much as a sledgehammer as chemo. Yes I'm alive with an expectation of remaining so for some time. I'd rather be in this position than the alternative. But being bashed with that sledgehammer continuously for a decade doesn't make it easy or enjoyable.

I have registered for the webinar. However, I don't have anything to complain about now with Letrozole. I don't even get hot flushes. 
As for chemo. well I  think it has prolonged my life.
We certainly are all different!

Thanks @Sarnicad, we will highlight as an announcement in the Online network in the morning tomorrow. FYI all members who have provided an email address to BCNA as a contact were advised by email of the webcast. All those using the online network have provided an email address so should have got an email unless they requested no contact. Sometimes these emails go direct to SPAM or junk mail - also worth checking to ensure you are notified of upcoming events.