My problem is my immune system is suppressed so I have to take steroids to keep me alive and cemo stopped them working properly hence coma, hope you don't have many problems with cemo, do you know when it starts, sorry if I'm being to nosy,... Billy 

You’re not being nosey..I have been on steroids almost 25yrs now. Lowest dose was 7.5mg a day. Was on 10mg a day up until May then I started getting one of my symptoms(triggered by diagnosis I assume) so gradually iupped it up to 30mg(to cover surgery/ recovery) and I am now down to 22.5mg daily. Will reduce down to 20mg on Monday and stay on that dose until treatment is finished. I’m suppose to start chemo 23 Aug. My hospital moves quickly, I suppose it’s because they don’t want you too have too much time to worry or think. 

Hi Billy, I think we’re all keeping the drug manufactures in business. I’m on prednisone as well and mycophenolate (suppose to eventually replace the steroids if/whenever I get off them). I have Myasthenia Gravis which has been under control for years now. Fortunately for me I get a warning sign when it’s not happy eg. my voice may become nasel, so I am able to nip it in the bud by resting and maybe increasing the steriods for a short period. Filling my body with medications every day was never on my have to do list or this C which definitely has to stay gone. Let’s stay positive and keep conquering each day.  I will keep you posted on my appts. next week... Jacqs

Hi jacqs thanks for info, my problem is called addesons after the Dr who discovered it it's my adrenal glands they don't work and without them the body shuts down completely hence coma I've had it over 14 years now unlike you no warning I just collapse, have to wear medi tag so people know what wrong, wrong meds can kill me,, then I find I had C incurable, I was not very impressed, hope you have a good day, is it raining there, wherever you are,. Best wishes... Billy 

What are we like with our rare conditions. It’s raining here too. Great summer so far!.. You have a great day too. Jacqs

At least we're keeping the chemist in a job and it's free that doesn't happen very often, best wishes.... Billy 

Hi Billy, Seasons greetings to you all and Marj58. How are you both...I finished chemo 25 October(4 sessions every 3 weeks) and radiotherapy(15 sessions) xmas eve. Fortunately, I had no side effects at all except under my breast is now  feeling a little sore where I had the radiotherapy but it’s not really bothering me. I have symptoms of a cough and cold thanks to travelling on London transport to my appts. but I feel ‘normal’ otherwise, the flu jab is doing its job. I cut my hair in September and it looked great(I had planned to do it back in April before I got diagnosed). It’s stating to grow back now, my daughter calls me ‘hedgehog head’ lol . I only lost my bottom eyelashes thank God, I prayed everyday not to lose my eyebrows and they stayed. Yippee.

I returned to work in November(School term started September) in the afternoons and went to radiotherapy in the mornings. I start back 6 January,where i’ll be phasing in,10am next week, 9,30am the following week, 9am the week after and 8.30am(normal start) the last week...

I started on Tamoxifen 28 Dec.which I take at night. So far so good, praying for no side effects.

I see my consultant 13 January for a follow up review. 

Thanks for being a great listener/adviser. I will keep in touch. I still visit the forum weekly.

Happy 2020 everyone.

Jacqs