Chemo and/or Dexmethesone side effects

They can take you off the Dex if they think that may be the issue. I had mine reduced to a quarter strength during infusion and no tablets after due to it leaving my face burned.

Louise J I take it that was your Oncologist's recommended regime?  Could u tell me if it was with A+C, or another chemo pls.  Yes, I kept saying when I first got the slight tremor in cycle 1, it must b the chemo drugs, but everyone including GP, Breastcare nurse, Chemo Nurse and Oncologist said it was the Dex.  Now Oncologist says it is not from any drugs! How am I expected to know, believe him?

Thanks kmakm and Louise. Yes unfortunately with the dedicated help of my GP I have seen 2 neurologist/stroke/Parkinsons experts who work as a team. They called in Head Speech Pathologist to asses the speech problems, she had no diagnosis but gave me techniques like using rhythm, however  speech has worsened. Now speak like a deaf person as tongue placement is wrong.
Surgeon was distressed when she drained my seroma for 3rd time (another issue I just don't need!) at seeing my tremor/speech etc and asked to b sent all reports.  However said she was glad that I was seeing someone who was across that speciality because she had not seen it before.
Spent 1/2 hr on phone previous week and 1 1/2 consult last week talking with Oncologist about options.  He just wants me to continue chemo as usual and "sort this out later". Have already postponed 3rd chemo on 25/10 chemo as awaiting antibody results from lumbar puncture over 10 days ago! Still waiting! Have to decide if I should go ahead on 8/11 (Oncologist's leeway of 2 wks) or wait 15/11 which was planned 4th A+C but will now only b my 3rd!  Family and I not keen to put anything else in body until we have firm diagnosis!  Has anyone else had to postpone for any reason and still had a "good preventative" outcome? Any comments so appreciated!

The dex is a fairly recent addition to chemo schedules. Years ago we weren't given it, so it is worth enquiring if cutting it out is an option. Assuming that the steroids are behind the whole business. I'm glad you have seen a neurologist, so ignore my response on your other post. You do need to be guided by your medical team, but pushing them to consider other approaches is perfectly OK. They won't agree to anything that is to your detriment, but if the chemo is your best bet of getting free of the cancer you may need to ask a lot of questions and negotiate a bit to get yourself through the next two cycles. Good luck.

Hi @Sirrah,

Geez, that sounds awful.  I wonder if it could be the combination of the Akynzeo and the dex? Is the Akynzeo a new drug?  I did take something before hand, larotadine and some tablet (think it started with E) but can't remember what its called now.  I had dex as a push injection instead of in the infusion but no reaction like what your describing just a bit light headed and shaky but not that bad.  Do they think it's the chemo drug or the others causing the reaction? Definitely need some tweaking of these drugs by the team.  

I had a bit of shaking from it but only take one tab on day 2 and half a tab on day 3 to taper off as it’s a strong steroid. I hope you have some help with this , all the best 

Sirrah this is really quite a big reaction you're having so I think you need to speak to your oncologist asap about your hesitation to take those meds again, even at half strength. I'm not surprised that you're reluctant! Can you ask your onc and neurologist to talk? It sounds like you need everybody to be on the same page and aware of your highly understandable concerns. Breast surgeons are usually the point person for BC. Have you spoken to him/her?

Thanks Afraser, head nurse at Oncology centre said it is a new protocol with 1 tab Akynzeo 1 hr prio to chemo, with ? amount of Dex in drip, then 2,2,1,1/2 tabs for 4 days afterwards. I wonder if any other clinic is using this protocol?  GP and Breastcare nurse, plus Head Nurse at my Oncologist's said it appears I am "too sensitive to it". Oncologist himself told me to reduce to 2,1,1,1/2 after seeing my tremor end of cycle 1. I don't think that would b enough to make a difference. Ended up like a stroke patient within 7 days!  Anyone else have any ideas if I should keep going with chemo, with no guarantee the side effects might not b exacerbated, as neurologist agrees?  B grateful for advice. Sirrah

I had A/C but very little Dexmethesone (only what was given with infusion, no additional) and had no such side effects. Sorry, can't help, it must be most unsettling.