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Old 11-10-2009, 05:10 PM   #3
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: Who do I call, what do I do?!!!

Chelee,

You sound a little stressed I think you are forgetting to breathe, so do that now, 3 times. Now 3 more...

Whoever just posted before me as Unregistered had really good ideas.

Now, take it one step at a time. Here are my thoughts:

1. This week, your primary care doc will be back on Thursday, right? You said he would help; you can wait 2 days for the pre op tests. Call his office and arrange for him to speak with you Thursday. You do not need to have any action taken before then.
2. Who ordered the tests? Dr. Femino should be the one who orders preop test I would think... If they need no preauthorization, why can you just go to the lab or whatever and get the tests? Does Dr. Femino have an assistant who can walk you through this?
3. You say Oct 16th herceptin is canceled. I don't remember if you have been on an every 3 week cycle; but you know that Herceptin has a 21 day half-life which means you will still have it in your system. You have several days in which to resolve that issue and hopefully reschedule the herceptin.
4. TM'ers - I assume this is tumor marker tests? I know you feel these are really important but if you have made the decision to have the surgery first then do chemo, would having the TM'ers done or not change any treatment decisions right now? Would you do anything differently if they are up? If they are down? It seems this could wait. Of course, they may show good results which would be very beneficial and might make you feel more confident.
5. I think the Tykerb question is worth revisiting; I don't know why this would interfere with healing.

You do need to be in control of your response to all this crap. You can let them know you're not going away and be persistent but they will not be able to respond appropriately unless you can do that in a way they can hear. They probably do not see themselves as the enemy.

You've vented some very intense feelings here, where it is very safe to do so - we are after all family. I'm not suggesting you've said any of that to the people you are dealing with; only that they might not be likely to respond appropriately if you do. I've only once said to someone (a case manager at my insurance co) "so, is this the part where you refuse to pay and just decide to let me die" or something like that. I was fortunate that she was able to respond in the right way, and did resolve the problem but it was because she VERY GOOD at her job and able to handle my emotional state.

Can you bring someone with you (maybe a lawyer) to the office where your doctor is...someone who can calmly and clearly advocate for you and make them give you in writing the reasons they are denying (whatever). Get names and numbers of everyone who says "no I can't help you". That might help open some doors or even minds.

I know you were hoping for the phone number of the one person in the world who can make this all go away. I'm still trying to get that myself.

The doors you need will open.

Much love
chris
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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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