HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 01-07-2016, 03:32 PM   #1
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: Working thread - what do you think the HER2+ standard of care should be really?

For any HER2 patient with brain mets caught early enough to treat with rads, the standard should extend up to 30 lesions to treat with SRS, especially since it isn't the technology that is making the limitation -- they can do them all.

Any HER2 brain met patient should be given detailed instructions about concurrent metabolic practices that the patient can add to the treatment regime to both boost efficacy and also to help protect the patient. This also should include post-care instructions for restoration after brain rads.

Any brain lesions requiring a craniotomy should be irradiated beforehand to lessen the risk of disease spread during the surgery.

Brain mets patients should be offered adjuvant treatment to try to control disease progression as soon as they are discovered in a HER2 patient. (we need more drug trial results damnit!)
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
agness is offline   Reply With Quote
Old 01-07-2016, 06:11 PM   #2
thinkpositive
Senior Member
 
Join Date: May 2014
Location: San Diego
Posts: 411
Re: Working thread - what do you think the HER2+ standard of care should be really?

Agness,

I agree with your recommendation regarding surveillance for brain mets. It seems that with HER2 disease (with nodal involvement) the risk of brain mets in the first two years from initial diagnosis is high enough to warrant screening. I also agree that those who do have brain mets should be well informed on options for treatment, side effects, how best to minimize these side effects, and what to do to get your body and brain back to optimal health.

Take Care,
Brenda
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
thinkpositive is offline   Reply With Quote
Reply

Tags
manifesto, standard of care


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 01:15 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter