Update after no-surgery date....

Esther · 10-30-2006, 12:47 PM

Well, even though my brain surgery for the 18th was cancelled, it wasn't smooth sailing after that.

The swelling was gone due to the Decadron doses, 4 mg every 6 hours, but the side effects were pretty awful. On Friday the 20th I tried to reduce the dosage, but my vision blurred, so I had to increase it again.

The decadron made me feel like I had a hole in my stomach, really bad GER.

Finally got some relief, when I was able to reduce my dosage to 2 mg, only 2-3 times a day, and start on some Nexium, as well as the Zantac I was already on. So FINALLY by Friday the 27th I was feeling better!!!

So all in all it was 2 very bad weeks, no surgery though, and we still don't know if there is tumor growth or radiation reaction from the SRS procedure from Jan 18th of this year. Last MRI was the 18th of Oct, no swelling, and will follow up with another MRI before Thanksgiving.

It feels just like it did in early Feb, when I experienced extremely rapid downsize in the lesion originally, so I'm hopeful it is reducing in size again. I'm still not sure why it rapidly decreased in size early this year, where we thought it was totally dissolving, then appeared to begin to grow or swell again, at a very rapid rate again. Maybe I'll never know for sure, but for now, I'm back to doing ok, and feeling better, and just cruising until the next MRI!

rinaina · 10-30-2006, 01:04 PM

I am so sorry you are having such a rough time these past few weeks. This disease can be so frustrating and challenging to say the least. I hope things take a turn for the better and I will be praying for that for you. It's difficult sometimes to hang in there but what else can we do.

StephN · 10-30-2006, 01:47 PM

Hi -
somehow I had missed that we had our brain tumors radiated on the SAME DAY, only one year apart. Guess I was getting busy with this year's challenge about the time your met showed up. I was then dealing with my radiated big met lighting up to a major degree, but not increasing, just showing major activity in the old tumor bed.

Never be surprised at anything with these radiated tumors. The process can take a number of turns I have learned. It also looks like you are getting more used to having something happening in your brain that you just have to keep a watch on unless you have something like earlier this month. We learn to just go on with life and give these things attention when it is time - just try to relegate it to the back of your mind.

My second very small tumor "went away" and then almost 18 months later showed up AGAIN. It is not changing much and I have no symptoms from it, so the docs feel it is the necrosis and are not wanting to rush in there like last Jan/Feb. Kind of like the tiny spot on my liver that does not change from year to year and the med onc is sure is not tumor.

WHAT IS ANOTHER SPOT IN OUR LIFE ANYWAY??? Merely an annoyance from time to time.

tousled1 · 10-30-2006, 04:20 PM

Esther,

Sorry to hear of your setback. I am glad that you got them to reduce the Decadron and that you're feeling a bit better. Decadron is a powerful drug and I know I did not like it at all. Hang in there, things will get better. You're in my thought and prayers.

Barbara H. · 10-30-2006, 04:53 PM

Hi Esther,
I'm glad that you have been able to cut back on the Decadron, but I also hope that you will be able to get off of it soon. I also have an area that is lighting up where I had a brain tumor 2 1/2 years ago and a year ago necrosis. They also are not sure what it is, but as long as I don't have symptoms and its not getting worse I'm opting for the watch and see approach at this point. Good luck and I hope that you get to go on that ski trip.
Best wishes,
Barbara H.

Joy · 10-30-2006, 05:13 PM

wanted to tell you that I, too, and hoping for a quick resolve, continued adventures (the FUN kind I mean) and no more decadron!!!!

Vanessa · 10-30-2006, 08:10 PM

I am sorry things are not going well for you, but I am hoping and praying that they get better. I understand your concerns about Decadron, I am struggling with that also. I also weigh 30 lbs more than I did before I started treatment. Best wishes and I hope things begin looking up for you soon.

Bev · 10-30-2006, 09:04 PM

Esther. hoping and praying your next scan results are something to celebrate. BB