Thread: Not ready
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Old 06-08-2013, 01:48 PM   #39
CoolBreeze
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Join Date: Dec 2009
Posts: 562
Re: Not ready

So ladies, thank you for all your kind words and well-wishes. Yesterday was my fiducial placement.

When I had the liver biopsy, I was not expecting any pain so when it hurt so badly, I nearly threw up and they had to give me IV Zofran. In everything I've done, that was the first medical procedure that had hurt and it really surprised me. I was relaxed and calm and suddenly felt like I was being stabbed.

So I was very apprehensive about repeating that experience, and this lasts a lot longer. When they do a biopsy, as you know, it's similar to a breast biopsy. They use the core needle gun and shoot it in your tumor and remove it immediately.

With this, they do many needles and have to leave them in while they take CT photos and make sure they are in the right place. They put needles in, take them out, make sure it's where they want it before they finally shoot the fiducial into you.

So I called them to tell them about my problems with pain the first time. I got a return call from a nurse who was horrible. Supercilious, rude, pretty much said "it is what it is and if you don't like it you can go somewhere else." Well, I called the doctor to complain and the doctor doing the test called me back. He asked me a bunch of questions about what kind of pain meds I'd gotten before, what my tolerance was, what I take now, etc. He said after 2 years of chemo that the tissue might be different and it might not be as painfulb ut he said he would do his best to control the pain and would add dilaudid to the versed and fentynl.

So, yesterday was the day. I was nervous. I was in pre-op and talked to the doctor again. They they took me to CT scan and did a scan with contrast, with my arms over my head (I *still* have a frozen shoulder problem so that wasn't easy). They left me in the machine, where they did the procedure so they could place needles, take pictures, see if everything was placed properly. And, I wish I could say that it was painless but that isn't the case. It hurt quite a bit at times, and honestly, I don't see how they can do it entirely pain-free. They need you awake because you have to hold your breath at specific times. it felt like he'd punctured my lung after one, I couldn't breathe in except shallowly.

At one point, they put this big needle in my liver that came out about 12 inches and then left to go look at photos on the computer and I'm lying there watching this needle above my head pinning me to the bed - I was like a butterfly pinned to a cork!

Anyway, it took about an hour and then I went to recovery. He wanted me to get to my "baseline" level of pain before I left but I'm not there yet still so that was foolish. Doctors! They wanted me there at least an hour and after an hour I knew I could walk so I said I was ready to go and they let me.

I came home and slept a few hours. Ate a bit of dinner, watched TV. Felt like I'd been kicked in the side by an elephant and couldn't take a deep breathe. This was annoying because my red cell count is low and I take in oxygen by deep breaths every few minutes! But I went to bed early and slept well and woke up today feeling like I was kicked by a horse. The breathing still hurts but is also better. So I think I will recover.

I don't want to do it again, I definitely don't. But it was not quite as bad as the biopsy, probably because of that tiny amount of dilaudid he added. I don't think versed and fentynl do anything to me at all, I've never felt them, never noticed them the three or four times I've been given it. If I do have to do it again, I'll either have him give me more or just take some of my own before I leave the house.

Next step is to let the fiducials "settle" or "scar in" and then I have a PET scan on the 17th. Then they will start the planning for the radiation, which will likely be at the end of June.
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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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