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Old 02-22-2014, 08:00 PM   #13
CoolBreeze
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Join Date: Dec 2009
Posts: 562
Re: On to next combo--H,P and ???

I have to agree with your nurse - I did one round of navelbine without a port and it was very painful. My veins felt burned and damaged and I wasn't able to move my arm for a time. The veins were like stiff strings inside my arm and I wasn't sure they would heal, but they eventually did. Because I only have that one vein to use, I had to protect it and get a port. Navelbine is extremely toxic.

Because I wanted to continue with that drug, which I found a very easy chemo to take, I got the port.

However, I totally understand not wanting a port. I didn't either and the only way I agreed to get one was when they said they'd put it in my arm. I wasn't going to have one in my chest. And, it is still there. I am happy that I can cover it with clothing because I'm super thin and it sticks out about an inch. I know it would be horrible in my chest and interfere with clothing and seatbelts and stick out where I don't want people to look.

Although I don't agree you should try Navelbine without a port, I do think you should not have to have one if you do't want one and so if a port in your arm is not a possibility, than maybe try a different chemo until you get down to no others. I know for sure my veins could not have taken two infusions of navelbine.

It did cause some regression in me - at the time I was trying to shrink my tumors so that I could get a liver resection and it did that. So it worked.

Nothing else has worked for me except for Gemzar, which was also the only chemo that caused me nausea. It was my 7th chemo though so it was time.

We are all so different in how we react to things that it's hard to say what drug will work for you, but I think if your nurse doesn't want to give you Navelbine in your hand she shouldn't have to, I think she might know something there and I've been through some awful things but wouldn't do that one twice.

Good luck I hope you can come up with a solution.
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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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