needing advice
 

It has been a rough few weeks. I keep hearing that Im holding up well and my stamina is excellent which is all great, but ugh Im just ugh ...
They did WBR in the morning, and hit the vertbra than in the afternoon would hit target more on each brain met. They said it will be six weeks before they know anything .... six weeks feels like forever already. I'm still getting rads to vertbra til Tuesday.
There keeping me on Herceptin every three weeks and than on the 13th I'll be starting Xeloda. They said that is something your take everyday pill form for two weeks on than one week off. That it passes the BBB and targets vertbra too.
I have hardly slept, the steriods (dexamethasone)are driving me nuts because my face, neck, ankles, arms, feet are all swollen and tight. They had me taking it four times a day and now I'm taking it three times a day. Last night I actually slept for 4hrs without waking up wide awake it felt great. They told me it will be weeks before they can fully take me off the steriods.

They had given me morphine at the hospital when the pain came. Which is weird because the pain was in my ankles, and knees yet the cancer was in the vertbra. They told me I needed to take morphine every four hours .... the new ONC that I have told me to take the 12hr one and if I have anymore pain than to take four hour one, but if Im not having severe pain I didn't even need to take it ... so I've slowed that down.

Than to top it off my ears started to drain, and they said I have weezing they were worried about infection but I dont have one they still gave me something amox/clauv to make sure it doesn't turn into an infection. My throat hurts and Im not sure if its from the steriod making it tight or what it is. I have to take it with food and its a pain w/ throat hurting. It seems if I eat something cold Im alright but eating warm food is different
My taste buds are gone, throat hurts, everything is tight, Im still pushing liquids and eating , I feel like I should be having more stools but when I go it doesn't seem like ... I think I need disposits. Is this stuff normal ??? They said these are normal side effects to radiation but Ive never heard of this before.
Anyone with ideas or help ? Im shouldn't be complaining because they're saying that Im doing well but all these little things are I don't even know. Anyone have any advice I need it BAD

They told me that Im doing great and their shocked how well my stamina and how great Im doing. I don't feel like Im doing great I feel like Im losing it .... I need any advice ANY ??

Re: needing advice
 

Hezzy,

You do seem to be doing great! Your thoughts are clear, organization is good - which shows that none of the tumors inside your brain had affected your cognitive ability. And that is wonderful news!

Several of our long-term survivors have beat brain mets. With modern technology and new treatment method, we can be very optimistic about your getting a good result.

You seem to have plenty of endorphin (happy hormone) that goes with positive thinking and better immune ability. Keep it up and we'll be waiting for your good report several weeks from now.

Re: needing advice
 

Hezzy,

You're really going through a lot. Try to relax as much as possible and let your body rest. Hopefully you can get off Decadron soon. When I had brain surgery, the steriod was the worse part. But since I had one nodule, the rads doc did not give me Decadron during my five shots of radiation. Perhaps the morphine will counteract the steroid's effects.

You are holding up very well considering the radiation to the brain and the verteba. You're a trooper.

I'm sending you big hugs to feel better soon.

Joan

Re: needing advice
 

Hi Hezzy, sounds like A/C to me...phew, it gave me a rough ride too. I had everything that you describe, and then some (I won't go into detail!!!). The steroids were awful, just as you described! I used a mouthwash called Biotin, it was very soothing for the mouth sores. Your taste buds will recover!!! I could not stand the taste of anything sweet. Seemed like my mouth always had a metallic taste. It took a long time for all the side effects to go away, but they eventually DID!!! Hang in there!!! XO Suzan