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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Perjeta Side-Effects
Tiffany,
The first time I was on steroids I gained about 10 pounds, and I was already maybe 20 pounds overweight. I had been at that weight for quite a few years. I attributed it to menopause and inactivity.
This time around, for whatever reason, I didn't gain weight on steroids. I was hungry a lot of the time, but somehow that didn't trigger overeating. I had other unpleasant steroid side effects, though. I was crabby and short-tempered, and the way I thought and expressed myself was more intense (maybe even extreme) than is normal for me. One upside is it gives me more empathy for people who are mentally ill! It really is a brain chemistry thing.
The difference, for me, between 2011 and 2016 was before I had to start getting steroids again I made a conscious decision to have a different relationship with food. I've always been kind of a control freak. I was very rigid and controlling with myself. I noticed I would overreact to hunger pangs. Yes, I was hungry. But I was treating it as an emergency, or an existential crisis. I decided to try to step back from that. In much the same way as we're taught just to notice wandering thoughts when meditating, I decided to just notice when I was hungry but not do anything about it right away. I could go on with whatever else I was doing at the time, and attend to the hunger later. Then I decided to "play" with smaller portions. No rules. No rigidity. Just experiment. I used to have two eggs and two pieces of toast for breakfast. What if I just had one each? How would that be? No rules anymore. I "allow" myself to eat as much or as little as I want. If one egg and one piece of toast wasn't enough, I could eat something else. No pressure. No guilt.
I now weigh 35 pounds less than I did at my peak steroid/cancer weight. I was not "trying" to "lose weight." (A big change for me. I've been "battling" my weight all my life.)
Don't worry too much about your weight. Take a 30 minute walk every day. You're right to focus on portion sizes, but do it in a relaxed, playful way. Don't be too hard on yourself. Be kind and loving to you.
And I encourage you to try upping your fiber a bit, especially soluble fibers like psyllium husk, apple, ground flax seed, oat bran, etc. Canned or cooked fruits and veggies still have the fiber, it's just a little softer (which is not a bad thing). Whole grains are good. Popcorn is good. Also fermented foods like yogurt, kimchi, sauerkraut, pickles.
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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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