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Old 05-16-2012, 08:34 PM   #1
Mtngrl
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Re: Not the best PET--Need to brainstorm options
Oh, I get it. Thanks Deena.

Yes, that makes sense. I'll follow up.

Much obliged.
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4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 05-16-2012, 08:58 PM   #2
ElaineM
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Wink Re: Not the best PET--Need to brainstorm options
Tykerb (Lapatinib), Herceptin and Arimidex or Femara sounds like a good plan.
Petuzamab might be approved as early as this summer if the FDA is nice to the drug company that made it. The FDA is already reviewing the Petuzamab evidence.
We also have a fingers crossed for a TDM1 approval by the end of this year.
Good luck. Take good care of yourself.
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Old 05-17-2012, 10:16 AM   #3
bevilj
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Re: Not the best PET--Need to brainstorm options
Hi, Sorry to read that you have progression and are in need of a different treatment plan. I read the other entries about Tykerb and Xeloda and wanted to share some details about both as I have had both in my treatment.

I was on Xeloda, Herceptin, and Zometa for almost a year. The Xeloda kept me stable for quite awhile. And while it is a chemo, it was not as 'harsh' as the IV chemo I had been on previously. My onc recommended Xeloda for my situation because my progression at the time was not too far along. It offered me a good option while keeping some of the more aggressive options in my back pocket for future needs. I experienced just about every side effect on the list of possibilities to varying degrees but was still able to work part-time, ski, hike 14,000 ft mountains, etc.

After Xeloda stopped working, we added Tykerb to the mix. I was on the T & X combo (still always Herceptin and Zometa) for a few months but couldn't handle the side effects. I lost weight, lost energy and was just plain miserable for weeks. But, it was working! So, after much consideration, I stopped the Xeloda and am now on Tykerb. I still have side effects but am getting back to feeling like my old self (that is the old self on Xeloda, not pre cancer). Tykerb seems to be working great on it's own also.

I'm not sure why the trial is being talked about by your onc at this point but I'm sure there is a good reason. Given that Tykerb is already available, I encourage you to ask about the difference between taking the pills on the trial and independant of the trial. Maybe it's the same but the trial offers the medical community more insight into the treatment?

I wish you well in your treatment plan decision. The good news is that there are several options out there. You can pick one now and use another later, should you need to.

All my best, Jen
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6/09 - self exam - lump!
8/09 –Dx - IDC, left breast. Suspicious mass,right breast (more testing required).
9/09 - Double mast/cholecystectomy /nodes removed. IDC confirmed, right breast. liver/bone mets. ER-/PR -/Her2 +. BRCA 1/2 -.
10/09 - Started Taxotere, Carboplatin, Herceptin, Zometa. Hospitalized with Tetany.
1/10 - Finished Taxotere, Carbo, continued Herceptin, Zometa. PET/CT - improvement.
2-3/10 - Rads (25 rounds).
8/10 – inflammation vs. malignancy?
1/11 – progression. started Xeloda.
9/11 – progression. pancreatitis or tumor? Chest ‘rash’ appeared.
10/11 – confirmed pancreatitis. Halted Xeloda.
11/11 – skin mets confirmed.
12/11 - started Tykerb, back on Xeloda.
1/12 – cut Xeloda dose in ½. skin mets fading!
4/12 - no more Xeloda. skin mets resolved.
8/12 - brain mets found.
9/12 - gamma knife and fractionated brain radiation.
1/13 - progression throughout body. brain mets shrunk/resolved. no more Tykerb.
2/13 - starting T-DM1 trial.
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