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Old 09-16-2012, 11:50 AM   #21
Mtngrl
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Join Date: May 2011
Location: Denver, CO
Posts: 1,427
Re: Herceptin & Tykerb Together

Hi @bnb. I'll tell you what works for me: 1) Take it at night, so if there's going to be an issue you get it out of the way first thing in the morning. 2) Stay on top of any diarrhea, including taking Immodium when you notice pre-diarrhea symptoms (such as gas pains, tummy rumblings, etc.) 3) Stay hydrated. 4) Eat yogurt and take probiotics, 5) keep your fingertips lubricated. For the skin issues (inside my nose, and my fingertips) I love, love, love shea butter. L'Occitane sells pure, 100% shea butter. It's expensive, but it's amazingly effective for all kinds of skin conditions. It's an amazing moisturizer and it's anti-bacterial.

Some people advise a low-fiber diet, but I actually think the opposite works better for me.

My research nurse asked me to log the days I have diarrhea and note how many doses of Immodium I take. The last cycle I had it around half of the mornings. This month I started taking a probiotic every morning with breakfast. I don't know if it's causal or coincidental, but the incidence of diarrhea is down to less than 1/3 of the time. I might just be getting used to the Tykerb.
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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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Old 09-16-2012, 09:52 PM   #22
pwiswell
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Join Date: Sep 2012
Posts: 29
Re: Herceptin & Tykerb Together

I am stage IV mets and was receiving Herceptin once a week for the past three years. My cancer markers just started to go up, so my oncologist feels the cancer has become immune to it. He has switched my treatment to xeloda and tykerb to see how that works. He may add Herceptin back again later. I have been taking these for a week now and so far am not experiencing much for side effects. I feel more tired than usual, but other than that, so far so good. I'm not sure if I will have more side effects as time goes on or not, but I'm willing to give it a try. Hoping for NED
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Old 09-18-2012, 07:59 PM   #23
bnb
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Join Date: Sep 2012
Posts: 2
Re: Herceptin & Tykerb Together

Ok,,thank you!! ,,,feel good keep smiling!!
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