Mickey's latest

mickey · 09-28-2005, 03:48 PM

I have not posted lately, awaiting medical newsbut have been lurking. I find this sight very comforting and many of us keep coming back even if gone for awhile. You guys are so supportive and informative.

I just got the results of my second followup MRI. To recap, I had one brain met, 5mm beginning of December. It was successfully zapped with gamma knife and followups in January and February turned up clear. April, however, showed 12 new tumors, largest one 9MM. I did 15 rounds WBR, finished in June. August MRI showed progression of tumors, but no new ones. My radiologist thought maybe this was due to swelling, and wanted to wait 4 months for another. My Med onc was not so sure and wanted a followup a month later. Fast forward this week. I had the scan Monday. All tumors have slightly reduced. No new ones. Good news, I guess. Does anyone know how long they can keep going down or at what point this is what I get? I had no problem with the WBR. My mind is still intact. I did not take any steroids and am glad I did not.

Some comments from all my lurking. I am right handed. Herceptin alone apparently does not work for me, However, with other chemo's it works great. I am currently on Abraxane/ Herceptin for a few nodes in the chest area. I was very afraid of getting Neuropathy since I am so active and my quality of life would greatly diminish. Abraxane apparently causes worse neuropathy than the other taxanes. I started using Glutamine (over the counter) and it works wonders. I have no joint pain, no leg cramps(I had them at night) and no neuropathy. I do not follow the directions. They call for a teaspoon 3 times a day. (I hope none of you take this as me trying to play doctor). I will do a part 2 as I am out of space.

mickey · 09-28-2005, 03:58 PM

I put a tiny spot of the glutamine on a teaspoon and mix it with a quarter cup of tonic water (also good for neuropathy). I do this three times a day. I have tried to eat better drink mostly tea. I now walk for an hour at least 5 days aweek. I work 30 hours or more, play tennis twice a week and try to concider each day a gift. I don't always want to do these things but after I have finished, am glad I did. Kind of like going to church. I don't always want to go but am glad that I did. I believe my cancer has come on each time due to stress. Everyone I know who has gotten breast cancer had gone through something tramic previously; either a death in the family or divource(in my case). I am trying to lead a new, stress free life by realizing that anything I stress about is not worth it and talking myself out of the stress. I also fall asleep praying. It is like a meditation and everything else is out of my mind. These are the things I am trying to do to reach NED once again and stay that way. Now, you can delete me.
Mickey

Lolly · 09-28-2005, 08:19 PM

Mickey, you're so funny! Who would want to delete you! Great news about the shrinkage, at least from my perspective. Will be interested to see what our other brain mets survivors think. Thanks for the tip on the Glutamine, I will run it by my onc as I'm starting Navelbine next week and then adding Xeloda in another week or two. I don't look forward to any more neuropathy, I've had it each time with Navelbine even with extra Vit B complex. It improves after each round, but has never entirely gone away.
Again, congrats, and hang in there. Hope to see you post more often!

<3,
Lolly

tammymarie1971 · 09-28-2005, 08:46 PM

Hang in ther Mickey, you sound like super woman!!! WOW talk about living your life, thanks for the inspiration!
Tammy

StephN · 09-29-2005, 12:09 PM

Hay Lady -
Well, I have been wondering how you have been lately. Was getting a little worried that the WBR had knocked you for a loop. Glad the opposite is true!
Any way you can get into a Lapatinib trial or try something else to diminish those brain mets further after the WBR??

You have probably noticed Pattyz's posts on what she is trying these days. Keep up the exercise and don't give in. You have given the BEST advice about NOT stressing - most things are just not worth it. Go on to something else that is positive.

Hope the the "walking weather" holds up - it is real stormy here today for the first time in a long while.

Sandy H · 09-29-2005, 05:11 PM

I find the glutamine powder really helps with the neuropathy but I have to take 3 grams a day. I get mine from Baxter Healthcare. My oncologist gave me the 800 number and I get it through mail order. I have tried it from health stores but it didn't work for me and then he told me not that kind only from Baxter Healthcare. hugs, Sandy