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CoolBreeze · 01-05-2012, 07:40 PM

There was a TDM1 trial in Stockton - is that still going on? Did you check? That causes diarrhea too though.

What's the reason you have diarrhea? I'm sensitive right now but have you had a stool culture done and tested for a disease, like c-diff?

I thought tykerb caused diarrhea and not xyloda but maybe I'm wrong. Can you try your chemo and herceptin?

Often, the insurance will deny it the first time but then approve it the second. However, there is recourse, you can fight the decision with the health insurance review board and they have to give you a reason for the denial and an alternative. I forget the name of it but the Sacramento Bee does articles about it on Sundays.

Other than that, I don't know what to tell you. I didn't even know there were assays that would tell you which chemo would be best. My onc seems to go by his own experience. I think he's pretty forward thinking and has been right about everything he's said so I'm not concerned but what would be the chemo if the assay wasn't telling you want to do with your SEs?

I'm sorry you are facing progression and I'm sorry this is happening. It's just not fair. I hope your insurance company changes their mind, and fast. Or, you get into a trial. UCSF should know of cutting edge trials so keep on them.

01-05-2012, 07:40 PM	#10
CoolBreeze Senior Member Join Date: Dec 2009 Posts: 562	Re: I could really use some input There was a TDM1 trial in Stockton - is that still going on? Did you check? That causes diarrhea too though. What's the reason you have diarrhea? I'm sensitive right now but have you had a stool culture done and tested for a disease, like c-diff? I thought tykerb caused diarrhea and not xyloda but maybe I'm wrong. Can you try your chemo and herceptin? Often, the insurance will deny it the first time but then approve it the second. However, there is recourse, you can fight the decision with the health insurance review board and they have to give you a reason for the denial and an alternative. I forget the name of it but the Sacramento Bee does articles about it on Sundays. Other than that, I don't know what to tell you. I didn't even know there were assays that would tell you which chemo would be best. My onc seems to go by his own experience. I think he's pretty forward thinking and has been right about everything he's said so I'm not concerned but what would be the chemo if the assay wasn't telling you want to do with your SEs? I'm sorry you are facing progression and I'm sorry this is happening. It's just not fair. I hope your insurance company changes their mind, and fast. Or, you get into a trial. UCSF should know of cutting edge trials so keep on them. __________________ http://butdoctorihatepink.com 08/17/09 Dx'd. Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS HER2+ ER+/PR- Grade 3, Node Negative 10/20/2009: Right mastectomy, reconstruction with TE 12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy 03/31/2010: Finished chemo 05/01/2010: Began tamoxifen, the worst drug ever 11/18/2010: Reconstruction completed 12/02/2010: Finished herceptin 05/21/2011: Liver Mets. Quit Tamoxifen 06/22/2011: Navelbine/Zometa/Herceptin 10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure! 11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years" 03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa 10/10/2012: Progression continues, started Halaven, along with herceptin and zometa. 01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa 03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta. 04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success! 05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo. 06/07/2013: Fiducial placement for SBRT 07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone 07/25/2013: SBRT (gamma knife) begins 08/01/2013: SBRT completed 08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa 06/18/2014: *** NED!!!!*** continuing with Perjeta, Herceptin, Zometa 01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly. 11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted. 5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean. I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.