Dexamethasone

Hi 

I was diagnosed in February 2020, just before covid hit, it was decided that I would have all 6 chemos before surgery rather than the usual after 3 chemos- which I think happened to most of us at that time- (nhs) - I had my operation in August 2020 and had 2 ‘mop up’ extra chemos after. They said it wouldn’t make a difference having treatment like this, I am 3c/4 stage so I wouldn’t worry too much.  Also i had a reaction to the paclitaxel too! Thought I was having a heart attack- they changed me to carbo/docetaxel which worked ! 
good luck with your treatments 

I think a basic hysterectomy without cancer involvement costs from £10,000 so with all the more complex surgery that cancer brings would be quite a lot more sadly. 

love

OK, thanks Audigirl52, but I guess if they changed your drug, then perhaps you weren't on any desensitisation/pre-meds before each chemo cycle, then... is that right? One of my queries is why they've decided to double my dose of Dexamethasone. My relationship with my Onco isn't great because she just doesn't communicate. I found out by pure chance that I was down for a further 3 cycles of chemo. She had 3 weeks in which to tell me so and didn't. My clinical nurse specialist just had to do a lot of work on my behalf to ensure I had the pre-med drugs I need for Mon/Tue next week, for instance because as the Onco hadn't bothered telling anyone who mattered (most of all me!) that I was down for another 3 cycles of chemo, no-one knew I should leave the last cycle (on 28 Mar) with my pre-meds for the next cycle. As I live 1h15m (45 miles) from the hospital, I made it pretty plain that I didn't want to waste 4 hours and do a 90-mile round trip to pick up half a dozen pills when this was all as a result of their mess-up and her lack of communication. Not good. Anyway, it's good to hear that they told you that putting off surgery and "infilling" with more chemo wasn't going to impact - though I have to admit, on past performance, in many respects, I don't know what to trust any more when they tell you this or that - that's when they actually BOTHER to tell you, of course!

Hi,

sounds like you have had a bit of a rough time with your oncologist - they sometimes don't communicate very well.  I found that a lot of it is handled by the nurses in chemo.

I didn't have the dexamethasone until i reacted to the paxol - then I had 3 days course - day before, chemo day and day after which seemed to work ok with the carbo/docetaxel combination. 

I hope you get on okay, I had all my treatment/operation  during lockdown, then did 2 years on a parp inhibitor Olaparib, and am now on active surveillance -  I have ct scans/blood tests and appointments so they still look after me 3 years down the line .

xx

Thanks Audigirl52. I was on Dexamethasone from the start, but then it was 4 x 2mg just after breakfast on the day after chemo, and for two days after that, therefore a total of 3 x 4 x 2mg. This is because they were delivering Dexamethasone via the drip during the first two cycles of chemo anyway... on chemo day itself. It was only when I had the adverse reaction that they started putting me on a desensitisation dose of Dexa plus some other drugs too: one anti emetic and one antihistamine. I just don't quite see why, with chemo cycle no. 4 coming up in 48 hours' time, they suddenly decide to double my dose of Dexamethasone pre-meds (and then also EXTEND the number of days I'll be taking it AFTER chemo). It just seems a bit odd and I wondered if anyone had experienced anything similar. No need to respond as I would perfectly understand if you can't remember exactly what dosage/how/when you were on it. I keep being told "everyone is different" - seems to be a very common thread. I have a pre chemo telephone consultation either with a Registrar Onco tomorrow or with my actual Onco Consultant, so I'll ask them then.

Hi , just checked my schedule diary, and I had 8mg twice a day for 3 days! So quite a lot of dexamethasone -  but no other antihistamine- I would check when you have your phone call tomorrow- 

good luck and let us know how you get on 

xx 

Wow! Thanks Audigirl52, that's quite a lot and exactly what they want me to take, having previously taken only 8mg once a day, not twice. Mind you, my Onco did also say I could "try" reducing the dose, so I did, and as far as I can see it made no difference whatsoever. I was still very weak in bed for 3 or 4 days at about days 4 to 7 or 8 of the cycle, didn't suffer any nausea, and was constipated. Same side-effects as if I took more of it. So I can only assume that taking less of it was an OK thing to do in my case. Instead of 4 x 2mg on days 2, 3 and 4 of the cyle, I reduced it to 2 x 2mg on day 2, and just 1 x 2mg on days 3 and 4. Anyway, the long and the short of it is that I will definitely raise it during the telephone consultation tomorrow morning (and let you know what they say). Thanks again!