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Re: Checking In: Bad News (Hello Kadcyla) and Good New!
Hi Kim,
I'm sorry about the progression; so very glad Kadcyla is helping!
Neuropathy's one of my most significant side effects, from Kadcyla and later from a little sojourn with Abraxane. Nerve damage is slow to heal. I was advised to take alpha-lipoic acid and a LOT of L-glutamine for it. I think they help.
Also, I figured out that, for me, some kinds of volatile organic compounds in the air aggravate my neuropathy. This includes diesel fumes, mold toxin, chlorine, and any kind of air "freshener." Plus probably other things I don't know about yet.
As for never going back on Herceptin, look at my signature. My first oncologist and I concluded that I need "Herceptin Plus" something. I've had two periods of being on just H&P. In the middle I had Xeloda for awhile, then Abraxane. This seems to be a good strategy for me. Everyone is different, but one of the best things about a group like this is we can compare notes and learn from each other.
In my signature I say my most recent scan was "stable." That was my interpretation. The radiologist said there was evidence of progression. My new oncologist took that to heart, said she thought my cancer had evolved to resist Abraxane, and wanted to put me on a new chemo right away. I vetoed that. When I read the report more thoroughly I concluded that what the radiologist called progression could just as well have been characterized as stable disease. I had no new lesions, and everything that had been "resolved" was still resolved. The lower lungs were still active, but not a whole lot more than before. I was taught not to put too much stock in variations in uptake levels between scans. You might be on a different machine. Your "background" glucose uptake might be different. It just doesn't mean a whole lot.
"Stable" is just as desirable an outcome as NED. Complete responses and/or long progression free intervals are exciting and great, but in reality they are not effective proxies for overall survival. I'm in this for the long haul.
I don't think I'm smarter or better educated than the health care professionals who are caring for me. But I do know my own history, and I know what's been working so far. (I have a new treatment team because I moved from Boston to Denver). I'm five years out. I'd be dead by now if it weren't for "Herceptin Plus."
Good luck with your current treatment strategy and the one(s) to come. Just take it one step at a time, and remember you can always get a second opinion. And I'm so glad you got to go riding again!
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Amy
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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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