To: Stephanie

[Hope]

Stephanie, I added another post to the one you sent me on Jan. 22nd

[StephN]

Thanks for letting me know.
Glad you are weaning successfully. My brain MRI report says I had "diffuse inflammation near the left ventricle" - so NO, no actual edema or water pocket.

I had the following episode today that I emailed to my med onc at 6:37am - and had an answer before 7 am!

"Dear Dr. L,
Wakened before dawn with sudden onset of terrific leg pain.
Noticed some weakness in my knees on stairs starting Tues. and Thurs. when cut to 2 4mg/day.
Some fluid buildup in knees on Thurs, but got around normally.
Now pain is almost unbearable. Had to come out and put legs up on loveseat and supported with pillows.
Took an Aleve - and will take another - at least took edge off pain so I could make it to the bathroom and computer!
Don't have any other sign that it is an allergic reaction.

Is Aleve ok or something else? Just scratching the surface with this pain."

He said to take 2 Aleve twice a day, and take 4mg Dex x 3 a couple more days. That did it for me. By late afternoon I could go out and meet my obligations.
But I do have fluid in my knees and generally from waist down, in spite of lying and massaging this afternoon.
NO headache or dizziness, tho. Just weakness from the darn Dex.

Did you increase your water intake a lot - I have by about 1/3 with this stuff - maybe too much now?

[JoJo]

Steph & Hope, we all had GK. I am sorry that you both are experiencing side effects, particularly post-GK. I had my first GK back in August, but I did not have any symptoms afterwards. I find that a bit puzzling that Steph had her first episode, especially that she & I have brain mets in the similar location (at bottom behind our left ears. I am glad it is only one episode so far, and Hope, I am happy to hear that you are getting better.

As you may know, my met had increased some in size (just by only ~ .5cm) in the early winter, so then they had rejected the 2nd GK proposal from my med onc, but recommended that I have another MRI in Feb. I am having one next week, then I meet my onc 2 days later.

However lately, I have been having a dull headache almost in the same location atop of my head on the left side, although intermittent, but very frequently. I am hoping that this doesn't indicate any bigger size in my tumor of which I won't need GK upon the results of my Feb MRI!

The waiting game is jus CRAZY!!!!

[StephN]

JoJo-
Good to hear from you - yes, you had mentioned a small increase in size.
My second small spot is in the center and higher cerebellum (lower brain) so had to be gone after separetly in the procedure (about 20 min "slow roasting").

I had a normal day today - went to a wedding! So, the pain is gone and I am tapering a little more slowly.

We will pray that met is stable, but the dull ache is something to pay attention to.
Please post after you see the docs.

[Hope]

Hi Stephanie, well this weekend was not good for me. As you know, they put back on Herceptin/Xeloda for 14 days on 7 days off. 3 pills in the morning and 3 at night. Well, on the 11 day, which was Friday, I got very bad dirrhea and stomach cramps. I took Immodium but that only helped temporily. I continued taking darn Xeloda. I should have stopped. Dirahea got worse and then is when I got weakness in legs and leg pain in my calves and chills. Frinally , yesterday, I refused to take the last 14th day of it. and today, I feel a little better. no more leg pain, but legs still dont feel the same. I reported it to my onc. nurse this morning and she will tell doctor to see if I can even continue on this stuff. I am on my last 2 mg. decradron until Wednesday, then I will be off. I still feel my head stuffy so I might still have some edema. I have 3week followup appointment with neurosurgeon on Monday. I will post to see what he says. I hope, I don;'t have to go on decadron again. Such nasty stuff. Did they put you on any Prilosec or acid reducers shile on Decadron. Onc.told me it was very hard on stomach lining. I don't feel acid in my stomach but a very gassy. Of course, that's probably from the Xeloda. Well, keep in touch. Glad to hear you are also feeling better. God bless you!

[StephN]

Dear Hope -
I posted an update on a message string someplace above,under "Mary's Legacy" (?), but you might miss it.

SO sorry to hear about the rough weekend you had - Xeloda on top of the Dex. You may have had a worse bout with your legs due to loss of potassium from the diarrhea. I hope you had some bananas to eat!

You say that you are on your last 2mg of Dec then you will be off.
My taper schedule calls for me to go down to 1mg in the morning for 3 days before I am done. So, I will have to cut the pills into 4, but I have a good pill cutter.

I am back on the prescribed taper schedule - it was just the drop from 12mg to 10mg a day that got me. I was also a few hours off somehow.
With this weaning down to so little I will end on Feb. 12.
My face is puffy and I have a big double chin that is NOT normal - can't wait for this to go away!

So, my "episode" was not from the brain met, but from these powerful antiinflammitories we have to take!
May God grant you some respite soon in your battle with this pernicious disease.