feeling so much better on 1/2 steriods! be your own best advocate!

dbhadra

Hi all:

I wanted to share in case this could help someone else - I;m in my 8th week of 12 weeks of Taxol and had been getting 10 mg of steriods (decadron or something like that in the drip).I was SO hungry and very charged up, waking up at 5 am every morning, lots of energy but like a caffeine buzz all the time. Gained weight like crazy- 10 pounds in 8 weeks!

Met with my oncologist on Thursday and told her these symptoms and asked her if it was possible to reduce the steriods. She said since I hadn;t shown any allergic reaction to the Taxol so far, they could cut the steriod dose in half to 5 mg.Did it this Friday and feel SO MUCH BETTER - not starving, not shaky and was able to go back to sleep for 2 hours after putting my kids on the bus this morning!

I wanted to share this - obviously I'm not giving anyone medical advice, I'm just saying...ask your doctor if you have unpleasant symptoms as sometimes we (I) might feel we just have to "suck it up".There may very well be medicine dosage adjustments or new medicines that can help, so don;t be shy and speak up.

As I shared on another thread, I also discussed Neaulesta with my oncologist and basically told her that yes, I want it.I;m fairly assertive with her (not in a negative way) and ask LOTS of questions, to the point where sometimes I feel she gets a little annoyed with me, but hey, it;s my body and my treatment and my recovery and I feel like I need to be my own best advocate.
Just putting my thoughts on this out there!

Laura

Bella Luna

Laura... Good for You! You
Laura... Good for You! You sound like a terrific self advocate. Glad to hear the cut back on steroids is working out for you.
BL

carkris

Bella Luna said:

Laura... Good for You! You
Laura... Good for You! You sound like a terrific self advocate. Glad to hear the cut back on steroids is working out for you.
BL

glad you spoke up and
glad you spoke up and something worked for you! and posting helps others, I have found out such great things from this site!

Marsha Mulvey

carkris said:

glad you spoke up and
glad you spoke up and something worked for you! and posting helps others, I have found out such great things from this site!

experienced the same
When I started on Taxol, I was getting 20mg of Decadron. For the first two weeks I didn't sleep more than 1 1/2 hours at a time. Then I'd be awake for about an hour or 2 and go back to sleep for another hour or so. I survived but told my onc and he too cut the dose in half -down to 10 mg, immediately I started getting 4 - 5 hours of sleep. MUCH BETTER!

Like you, I also experienced that shakey feeling. It was internal. I could hold my hands still but they felt like they were going to shake off! My legs felt like they were trembling too and I felt "strange" in my head. All of these problems were corrected when the amount of steroid was reduced.

Happy for you that you were able to get this corrected. Since I had the same thing, I know how awful it is.
Marsha

DebbyM

Bella Luna said:

Laura... Good for You! You
Laura... Good for You! You sound like a terrific self advocate. Glad to hear the cut back on steroids is working out for you.
BL

Very happy that you took
Very happy that you took charge and are now feeling better Laura! Good luck to you!


Hugs, Debby

Gabe N Abby Mom

What a powerful feeling to
What a powerful feeling to take charge and get a good result. I'm glad the half dose is working for you.

Hugs,

Linda