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Old 03-26-2013, 07:45 PM   #6
CoolBreeze
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Join Date: Dec 2009
Posts: 562
Re: Question for liver metsters

I am back to "normal" - it only lasted a day.

No, I haven't had xeloda or tykerb. I think because I have colitis he tries to give me ones that are easier on the colon - I know tykerb can cause colon problems, don't know about xeloda. He said treating me requires a "delicate balance" because of this darn c.diff I got. It's a good suggestion though and I'll mention it. My doctor prefers xeloda for bone mets but that doesn't mean he doesn't prescribe it for other mets.

The gemzar was supposed to be the stopgap until TDM1 but I couldn't tolerate it.

Jackie, as you can see from my signature, I've already been on Taxol and Navelbine.

He has assured me there is more to do so I am not worried about that although I suspect my recent scan is going to be a poor one so we'll see. I am really hoping that TDM1 is the one that helps me and I hope I get on it soon. I'm not sure what's taking so long for their office to get it. But he has promised me he'll put me on it so hopefully, next time I see him he will have it ordered. I'm ready!

I am not an alternative medicine believer - I'm a very scientific gal and believe in research in labs to prove treatments. My youngest child wants to do a hard science and is going to do research in a lab this summer (he's a junior in HS) so you can see it's all in the family. He's been accepted to a very prestigious summer program and I'm super proud of him. It's across the country though and I have no idea how I'm supposed to get him there sick as I am. I hope by June something has me feeling better.

Karen, I have seen a liver specialist, Dr. Eric Nakakura. Google him, he's written lots of papers on mets to the liver and other GI cancers. He was the doctor who did my liver resection. People come from all over the US to see him.

I do appreciate the suggestions. I am not averse to trying acupuncture as maybe it would help with the pain. Seems to have been around for thousands of years so it must help people feel better.

I'm not sure what you mean by a "cheerful heart." If you meant me, I am not a negative person, and am in fact, pretty cheerful considering the hand I've been dealt. If you meant in general, I think we have to be very careful when we start to think that attitude can cure cancer. A positive attitude and cheerfulness can make life with cancer easier, for sure, but it can't stop those cells from dividing otherwise we'd all be healthy.

There are plenty of cheerful, hopeful, happy people who thought they would survive who are now in graves because the disease got to them. There are also mean, sour, nasty people who manage to live long lives. It's just one of those crazy things in a chaotic world that often makes no sense.

I'm very against blaming cancer patients for their own illness. I think we need to be very respectful of the way another person chooses to deal with a terminal illness. Not everybody can joke about it like I can and I would not expect them to. I think it's easier than crying all the time, but if somebody wanted to spend their time crying, I wouldn't tell them not to either.

Thank you ladies for your suggestions. I guess we'll wait and see what the doc says on April 3rd. That is 2 days before my 55th birthday! Although I suspect I won't be hearing good news, I still plan to celebrate my birthday. Somehow! I am not sure how since I can't do very much anymore, but I'll think of something.
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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.
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