After a break, Letrozole, continued...

@"Kiwi Angel" @arpie My GP is a 100% knockout amazeballs doctor. If I ask her to look into CBD oil she will. I will give her a heads up next time I see her so she can investigate.

I will let the acupuncture run its course first. I am methodically working through everything. As frustrating as the slowness of this method is, it gives me certainty in my answers when I'm asked if I've tried X.

I'm unclear why your rad onc could think you would get stoned on CBD oil. I thought it had the THC removed. A quick Google just now reaffirmed that belief. I don't want to feel high, I just want the pain to stop and sleep better!

If all else fails I'll just have to CBT my way to reframing my current experience of life to get through the next nine years. I'll meditate and mindfulness until I f*****g glow with acceptance and serenity...

Thanks for offering to incur spousal wrath @kezmusc! It's OK though, I've got some carefully preserved oxycodone from all the operations and my burnt hand incident. I'm taking one today for a 'treat'... Which is just insane when you think about it.

From what I can gather many in the research & cancer community are aware of the quality of life issues on these drugs. I'm about to do a webcast on endocrine therapy and I will push this question. Maybe the oncologists need to convey information better to us, be more empathetic. My breast surgeon said the other that they're aware and working on it. I'd like some details...

I find your question about the TNBC fascinating. It strikes me that on one hand it'd be great because there's no daily meds & multiple side effect issues to constantly remind you of BC. On the other hand no reassurance (if you're one of the people for whom it works and you don't know anyway) of a medication that could be nixing any new growth.

Devils everywhere no matter your diagnosis...

Hugs gratefully received. Can I convert to lower leg and hand massage?! K xox

Thank you @Doodoo.  <3

@Sister Yes, it is hard. The long term horizon especially so. You can put up with short term pain because you can look forward to the end. But ten years is a big ask. I'm almost at the one year mark.

Prednisolone hasn't come up up. No one has mentioned it to me. I shall raise it with someone at some point, at the very least as a possibility of having a break from the pain.

I am So Sorry to hear your pain/discomfort has cranked up @kmakm.   Mine ebbs & flows.  I have a different pain now I am on Arimidex/Anastrazol .....  more of a 'continual ache' that is just as annoying - particularly with my fingers & thumbs - my fingers don't like bending at all now!  :(   My feet are a bit sore too. 

I have been taking the cannabis oil that my sister purchased at Nimbin for 2-3 weeks now - taking the CBD Oil 3 x daily & the THC oil at night.  I truly believe it has 'lessened' my awareness of a lot of the 24/7 pain (except my hands!) The upside is .... I am now sleeping a LOT better than before, tho I still have a bad night about once a week, but the other nights have been glorious.  I fall asleep quicker & stay asleep longer - tho it hasn't worked like that for my sister (her main reason for trying it was to SLEEP.)   

When I mentioned possibly using it to my Rad Onc earlier this month - she was concerned about any psychotic after effect it may have - but I have had none of them either.  I don't get any 'highs' or 'stoned' feelings with it at all, whereas my sister did - she got that 'stoned' feeling.  If she doesn't continue using hers, I'll grab it from her for my own use!!    

Apparently, there are SO many hoops to jump thru to get a script for medicinal cannabis - it is as if they are trying to put people off from applying for it which is ridiculous, given the anecdotal evidence of the benefits vs damaging high potency addictive drugs.   

I really think it will be worth your while to try & kick start the paperwork - @Sister  too - but it can take ages to get thru the paperwork, apparently.  I reckon you should definitely demand your right to try it.  @jena  may be able to help you with that - but being in a different state, there may be different 'rules' re the legal use of it.  

All the best xx

CBD oil is available Australia wide and any doctor can prescribe it but because paperwork is involved and most have never done it before, they will just fob you off. It is supposed to be available to all cancer patients. The cannabis seminar I did which is available as a webinar tells you what is involved. I believe it may be on the BCNA site @Giovanna_BCNA ? Don’t accept no as an answer from your doctor.

@kmakm,

 What I don't understand is why, when these drugs that have been on the market between 25 and 50 years something hasn't been done to tweak them.  It's just like "Oh well, it works" (mostly) so you just have to suck up the shitty side.  Surely that's long enough to realise the debilitating decrease in daily life for some people to have a look at improving them.  Maybe they can't.  It is not a minority that suffers either it is huge numbers of people.  All you have to do is look at FB and see there are support pages purely for people suffering on hormone therapy. Tamoxifen has about 4 different pages with thousands complaining of the side effects.

 How can you move past this thing if every day is a struggle and a reminder as soon as you open your eyes..  But then we are too scared not to take them just incase they are working. Whether they are or aren't is all a bit of pot luck but do you  continue to merely exist and not live?  It is a ridiculously hard choice for those that suffer a lot of side effects.  
I often wonder how the triple neg ladies go. Whether or not they worry more because there is no HT for them.  Or whether they are able to move on with their life a bit quicker???  @SoldierCrab what are your thoughts lovely?

CBD oil is available in Qld (not sure about the rest) under a special access scheme.  Doctors seem a bit reluctant to prescribe it though from what I have heard. 

Unfortunately @kmakm I don't have anything useful to add to get rid of the pain. You've tried everything I think. My husband has some oxycodone for his shoulder, I can post you some.  I have tried to get some off him but he guards it like a pitbull. :smile:

Hugs sweets.  Gentle ones of course.
xoxoxoxoxoxoxo

What a bummer @kmakm. Must be horrid!! Sending a big hug xxoo

@kmakm sorry u r having such a rough time. Good luck with the oil - I mentioned it to my oncologist and she want too sure how to access it. All she knew of was if someone has metastatic disease they can write a disclaimer letter in case u get caught by the police with it on u. Hope u find something that gives u some relief xoxo 

It's hard, isn't it?  Determination to stay the distance and you're in such pain.  Prednisolone was magic for me (joints mobile and mostly pain-free 6 hours after the first tablet) but the pain is starting to creep back in.  I guess what I don't know at the moment is whether it will stabilise at a lower level because I'm not sure I can go back to what it was - sometimes the kids would have to help me out of the car or down steps.  Has it been suggested to you @kmakm?  CBD oil is definitely worth a shot if you can access it.