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Old 09-15-2013, 12:39 PM   #1
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A newly diagnosed family member-- with a few questions

Hi everyone!

My sister has just been diagnosed with stage II, HER2+. I've been doing a lot of research on this great message board -- thanks for helping us start to deal with this news.

After going for two different opinions-- my sister and her husband have decided to go with an oncologist who has decided to start her with Herceptin and Tykerb for six weeks before starting chemo for another six weeks followed by surgery.

She just started the herceptin intravenously on Thursday and is taking Tykerb orally.

The other doctor (whom she didn't choose) had said that approach wasn't the right way to proceed.

I need to say we are reeling over this diagnosis and don't know wheather this is the right or wrong thing to do. We're feel helpless, lost and confused.

Any input would be really appreciated.

Thanks so much! Prayers to everyone.
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Old 09-15-2013, 02:31 PM   #2
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Re: A newly diagnosed family member-- with a few questions


Welcome to our group.

I would agree that the it is not the traditional treatment. However, more and more oncologists are offering neoadjuvant treatment. I wonder if this is part of a clinical trial?

I disagree with the statement that it is not the right way to proceed from my experience as a patient. Personally I would have leap onto the chance to do a treatment that included only targeted treatment for the first six weeks.

I have read that a patient who did a treatment combination of herceptin and tykerb experienced a complete response (tumor disappeared).

Do you recall anything about post surgery treatment? Perhaps continuing the Herceptin?

Everyone agonizes over the right or wrong choice in the beginning after a diagnosis. I feel there is a benefit to this neoadjuvant (before surgery) treatment approach as it gives so much more information to the doctor - with scans to determine treatment effectiveness.

I wish your sister an easy time with treatment and surgery.
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Old 09-15-2013, 08:03 PM   #3
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Re: A newly diagnosed family member-- with a few questions

Please read the post "You'll love to read this" by Lani for helpful info.
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Old 09-16-2013, 04:12 AM   #4
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Re: A newly diagnosed family member-- with a few questions

Sorry your family had to join our "club," but we're glad you're here. Tell your sister not to worry about anything until she has to. She's going to be fine.

Although I had what was then the standard of care for patients who are Stage IV at diagnosis, and although at least one study said that Taxol might actually "train" the immune system to recognize the cancer and eradicate it (and although I had a good response from the Taxol), my oncologist thinks targeted treatments are an especially good idea with HER-2 positive cancer. Your sister's immune system is her primary means of recovering completely from this cancer. Have her do all she can to boost it, including mindfulness meditation, excellent nutrition, exercise, and good sleep. She might also try guided imagery. Anything she can do to improve her sense of wellbeing and mastery will make her own natural defenses work better.

I was on Herceptin and Tykerb. I got some great advice from someone else who's on that combination: "Stay ahead of the diarrhea." I took it at night, right before bed, and I took Immodium at the first sign of a loose stool. I also ate lots of yogurt and/or took probiotics. Hydrate.

'Lizbeth and Nancy are right--neoadjuvant therapy for HER-2 breast cancer seems to be an exciting new breakthrough in treating it.
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 09-16-2013, 06:22 PM   #5
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Re: A newly diagnosed family member-- with a few questions

'You'll love to read this': http://her2support.org/vbulletin/showthread.php?t=59005

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Old 09-16-2013, 07:04 PM   #6
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Re: A newly diagnosed family member-- with a few questions

Each oncologist should be able to tell your sister why they recommend a particular treatment plan. Treatment protocols seem to be rapidly changing. Also, I found it helpful to be part of a system (Franciscan) in which all of the various providers weigh in on treatment plans during weekly "tumor boards". At least I then knew that other oncologists (and radiologists and plastic surgeons, etc) had reviewed my case. I think this type of care is becoming common.

In my case I had neoadjuvant chemo (TCH) prior to surgery because of a large tumor size. The herceptin followed by chemo and then surgery sounds intriguing, but you are right to have questions.

  • Age 54 at dx (April '13) Stage 2b, grade 3
  • ER+ PR+ HER+, 9 cm tumor one breast and <0.5 cm in sentinal node
  • BRCA1 and 2 negative
  • Neoadjuvant TCH chemo started 5-15-13 (4 rounds, 3 weeks apart)
  • Unilateral Mx w/expander 8-22-13 (right side)
  • 5/5 nodes Neg
  • clear margins but close. Tumor at removal down to 2.2 cm.
  • Radiation 6 wks starting 10-17-13.
  • Herceptin every 3 weeks until 4-23-14
  • DIEP/Mastopexy 10-8-14, U of WA
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Old 09-17-2013, 08:34 AM   #7
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Re: A newly diagnosed family member-- with a few questions


The tumor shrunk from 9cm to 2.1cm - that is amazing. And only 4 treatments of TCH instead of 6. That is better yet.

So pleased to see treatment changing. It took awhile for neoadjuvant to catch on, but it is really hot. I searched the clinical trials and there are large numbers of pre surgery options. And with luck - it will result in a more rapid number of fast track approval and a lower number of patients agonizing over the question "Did my treatment work?"

Still I wish we could have Rational Therapeutics in a clinical trial so we could use the cancer cells as test dummies, and not the actual patient. This is a no brainer.
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her-2, herceptin, positive, tykerb, unorthodox

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