Addison’s disease & TNBC

Hi 

I'm going to 'tag'  as I think they have just completed chemo whilst having Addisons.

They aren't TN but the chemo regime is probably very similar - perhaps you can have a chat about it ?

You can read their last discussion clicking here (2 pages) and check out how little chemo seems to have had an impact on her Addisons.

Hope this is of some help, G n' J

ive only just seen this, feel free to ask away And49.

Hi mystronglady, thank you so much for reply! Can you tell me how u are taking ur steroids over chemo days? I’ve only been diagnosed with Addisons 2weeks and nobody seemed to know what to do with me? 

Endo where I’m having chemo say take Dex on top of hydro but endo in London saying stop hydro on dex days then double dose 3 days after then taper?? It’s been so confusing and frustrating. Chemo nurses all say to do both as hydro is replacing what your body isn’t making and dex is to boost not replace which kinda made sense ...but then unclear on updosing after?

thanks again xx

Hi and49,

My wife's endo told the onco, to Medicate the following way, take  the dex on the day of chemo and for 3 days after, then go back onto the hydro double dosing for a few days to a week, the dex stopped the day the stomach injections start, personally I'd double dose for a day or so after the injection but you should know by how you feel.

We were also given arepitant on the day of chemo and for 2 days after chemo, this is apperently an extra strong anti sickness, it was given because although it's not good for anyone to be sick it's very important that you don't lose your hydro, if you are sick, you need to take more hydro and need to speak directly to the endo or go to hospital and, or be ready to inject, assuming they've sorted out your hydrocortisone sodium phosphate and injection kit.

My wife didn't suffer any sickness, the arepitant isn't given to people normally unless there having sickness problems but Addison's patients should be given it at chemo and after, I believe this helped my wife but maybe she was just lucky.

I've probably missed info so please ask.

There is a brilliant Addison's private group on Facebook "UK Addison's disease info & support group" if your not on Facebook it's worth your while going on it just for this group, there's so much you need to learn, my wife's been very lucky with her Addison's but some have a terrible time.

just re read your post, your 2nd endo is the one who is right, you could be overdosing if you take both. although the comment that says the hydro gives you what you need daily and the dex gives you what you need for chemo does make sense, my own view is why not skip the dex and just use the hydro, as this is what your body is used too, if you have an operation you would receive a hydrocortisone sodium phosphate injection, im not sure on the amount but its critical that you have this injection before any operation, also double dose prior to the operation and for 3 days to a week afterwards, your endo must be tagged in to all your treatment but you need to ensure this is happening.

this is going to sound critical of the nhs but its not meant to be.

many of the endos simply know nothing about addisons, other than a short lecture they had in the distant past, they simply might never have and never will treat an addisons patient, if your symptoms of addisons are severe then find out whos the best in your area, there are some real experts out there.

Hi mystronglady,

so had chemo 4 Friday and was bit rough but tried doing both steroids yesterday and felt too much. Today I’ve halved hydro then tmrw is last day on dex so will double up on hydro days following. This is not what either endo advised but feel I know in myself and hopefully I’m ok. Next cycle is different as I’ve got 11 rounds in 8/9 weeks with 1 every week and 1 evert 3 weeks on top but told I have steroid injection (I think hydro) during this? I did manage to get the items for 2 kits sorted with gp thankfully. My gp has been phenomenal all thru this and she knows how rubbish the endocrine is at hospital I’m having chemo so has written to London endo who I’ll return to after as really don’t have energy to go traipsing  up to London just now. 
thanks for the advice and replies x