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Old 09-09-2009, 12:01 PM   #5
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: help advice please ?

Hi Heather,

Remember, you have no need to apologize here - we've all needed to vent and thank goodness we have each other!

You have been through a lot, and been ON a lot of medications. Remember, you also have not been eating regularly, so your entire system is under siege. The combination of all that could be contributing to nausea. Talk to your doctor about this and if you need it, ask for some meds to help you.

Although I have not had radiation such as you have, the recovery period until you feel more or less normal will vary. The more you can do in the way of getting good nutrition, the sooner you will be able to regain your strength.

You're doing the right thing by trying to stay hydrated and get some nutrition.Start slow, if you can stomach a fruit smoothy with some protein powder, that might help.

Re Xeloda, (I also have not had that so remember I am ignorant) I do know from friends here that the main side effect (hand/foot syndrome) can be more bothersome than just "dry skin", so be vigilant on this - avoid walking barefoot, use moisturizers (Sheila loves some stuff called "Ahava"). Sheila is the Xeloda queen, she can tell you all the tricks.

Xeloda/Herceptin is a fairly common and effective combo - although Herceptin is not likely to cross the BBB. Tykerb is thought to cross the BBB so may be protective of the brain, and has been shown to be effective in combination with Xeloda. As you are dealing with brain mets, it is worth discussing with your onc. Tykerb (which I have been on!) has diarreah as the main side effect - most people can control this well with diet and Immodium. Part of my war on that side effect has been my persistent refusal to learn how to spell it.

One of the toughest things about going through treatment is keeping your spirit strong. Even when you are feeling well physically it's hard...but it can seem unbearably draining. Hang in there, remember if you feel this crappy it's nothing to what those dumb cancer cells are feeling right now.
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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