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01-07-2016, 01:43 AM
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#1
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Senior Member
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
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Working thread - what do you think the HER2+ standard of care should be really?
If you have been around a while then you know that Perjeta is only a couple years in use with the locally advanced breast cancer population. Some patients and their docs are adding it on adjuvantly for earlier stage disease, such as when a patient has surgery first and learns that she is stage 3 after the fact. Research shows that HER2 responds best to a dual anti-HER targeted therapy regime, that a Herceptin and Perjeta work synergistically with the patient's immune system. Logically this means that really all HER2+ patients should be offered Perjeta, but I think insurance still fights it often and some docs fly alone (I know someone who got both Herceptin and Perjeta for a year).
Studies of neoadjuvant TCHP (Taxotere, Carboplatin, Herceptin, Perjeta), on which professionals use to adjust their practices and insurance companies use to justify their financial support, aren't due until summer 2016. Up to this point research from the stage 4 trials was just applied by the FDA to make these drugs available to stage 3/locally advanced patients. So, the data used to inform professional practices will be at least three years old when it might be used to change practices. Not good enough.
HER2+ breast cancer patients with any nodal involvement, a very high risk with our aggressive disease, should receive screening brain MRIs for several years without any push back -- it should be standard at diagnosis and annually at least. I think even better might be every six months for the first two years since for many women brain Mets are caught during adjuvant Herceptin. The sooner brain mets are caught the more options there are to treat them.
What else do you think needs to change? What didn't happen that should -- and at what disease stages? Where do you see lapses in logic, science, and disease understanding?
Let's compile our own thoughts and maybe we can build a HER2 patient manifesto from our ideas that WE can use to establish a new standard that is more appropriate to our disease.
Last edited by agness; 01-07-2016 at 01:44 AM..
Reason: Typo
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01-07-2016, 03:02 AM
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#2
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Senior Member
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
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Re: Working thread - what do you think the HER2+ standard of care should be really?
I would like to have all HER2 patients receive basic nutritional labs at time of diagnosis and then to be able to choose to work with someone trained in integrative medicine to restore.
Copper and copper binding protein (ceruloplasim)
Zinc
Ferritin
Vitamin D
Last edited by agness; 05-14-2016 at 04:35 PM..
Reason: Typo
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01-07-2016, 04:52 AM
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#3
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Senior Member
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
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Re: Working thread - what do you think the HER2+ standard of care should be really?
Here's another idea, in the past 18 months the standard of care has shifted from full Axillary lymph node dissection to sentinal node dissection (SND) based on a large body of evidence that hacking up women's armpits wasn't affecting survival at all and they were causing a lot of lymphedema. I only had a SND because I pushed for less surgery.
After my lumpectomy and SND revealed no disease SND I was told I was NED I was still pushed to get rads. Since I have kids and there isn't really data or studies to the contrary (women who decline don't get tracked or count in oncology most often) I decided to do proton therapy and cause the least amount of damage possible to my body. The tsdiation oncologist refused to do less and so healthy areas of my breast and chest wall were included ("I doubt you will find anyone willing to do less")
I think that any HER2 patient who has a PCR to neoadjuvant treatment should be able to skip rads. The bigger issue for our disease is brain mets. If you don't have a PCR then definately proceed with rads.
Last edited by agness; 05-14-2016 at 04:36 PM..
Reason: Typo
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01-07-2016, 08:11 AM
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#4
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Senior Member
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
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Re: Working thread - what do you think the HER2+ standard of care should be really?
43 people have read this thread today and no one has anything to contribute?
__________________
- 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.
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01-07-2016, 08:54 AM
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#5
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Senior Member
Join Date: Mar 2011
Location: Pittsburgh, PA.
Posts: 260
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Re: Working thread - what do you think the HER2+ standard of care should be really?
For survivors & aftercare: I think there should be primary care doctors assigned to HER2+ patients for aftercare. I know I am so frustrated with my aftercare, I think it's been harder for me after treatment trying to get my body healed and having a doctor who understands all that I've been through. The only doctors that seem to know anything about my type of cancer is my oncologist and breast surgeon but they are only available at specific times like 6 month or yearly checkups. I have met with so many primary care doctors and all of them have no clue on what HER+ cancer is - I find myself schooling them on this disease. We should also be told the effects of diet and cancer and be given nutritional maps to follow - I agree with Agness on the need for integrative medicine.
__________________
11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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01-07-2016, 08:59 AM
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#6
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Senior Member
Join Date: Mar 2014
Location: UK
Posts: 563
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Re: Working thread - what do you think the HER2+ standard of care should be really?
Sorry Ann
I'm one of the 46 who have read your posts.
Not sure what to suggest.
Would agree with blood test for VIt D, Minerals etc.
Would like to see CT scans being done asap for all (mine took 3 months & too late)
On further thought - full discussion with all info and options would have been helpful.
One size fits all not the way to go.
Juls
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01-07-2016, 12:04 PM
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#7
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Senior Member
Join Date: May 2014
Posts: 307
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Re: Working thread - what do you think the HER2+ standard of care should be really?
I will be at 2 years since DX in March and at that time my onc said I will only see her every 6 months - unless some problem comes up. I feel like I am being kicked out of the nest. I have never had an brain scan of any type during all this. Maybe because I was only stage 2? My blood work has always been "very good" - mo's words/opinions. After care and how to get your body back instructions/information does seem lacking. I like to believe the less is more approach is because the medial team is certain I am fine now.
Prior to treatment I wish I would have asked more questions but I was so shell shocked I just went with the program. In hindsight I would have asked about how much each part of treatment affects outcomes so I could have weighed each against the side effects and diminishing returns, so to speak. Of course I think many of the side effects weren't mentioned or were glossed over.
I agree - one size does not fit all.
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01-07-2016, 12:45 PM
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#8
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Senior Member
Join Date: Nov 2014
Posts: 83
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Re: Working thread - what do you think the HER2+ standard of care should be really?
I haven't had a chance to read everyone's posts. But I wanted to resonate a few points probably already suggested and more:
1. connections to a integrative or nutritionist
2. brain scans at dx (I got one) and 6 mos thereafter esp if there is lymph node involvement
3. bone scans at dx (I got one later)
4. some sort of preventative protocol like Kadyla or Tykerb or Xeloda esp if there is lymph node involvement
5. I had a "chemo teach" when I first started treatment to help explain tx and drugs...How about at Her2 teach to inform patients about Her2 disease and targeted therapy should we need it in the future.
6. Her2 "specialists" in the clinic who actually know about our disease, or access to one. Onc should know who to refer to in case of Her2 q's and we are definitely all different in our disease
7. Labs to check CBC's, Vit D, zinc, etc
8. More info on clinical trials and drugs in the pipeline for Her2
9. alternatives to WBRT. Yes, they can do SRS on several lesions. So why insist on WBRT??
My brain mets were only discovered because I got severe headaches from a degenerative disc at C5. If it wasn;t for the pain I was getting in my shoulders, neck and head, I would not have gotten the MRI that found brain mets. We discovered my degenerative disc at diagnosis, when I was 40. My MO thought my disc was causing more problems and ordered the MRI. Boy, were we surprised when 4 lesions showed up on the MRI! I'm still living with those lesions, but I have to do my own homework to find alternative treatments to WBRT.
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01-07-2016, 03:28 PM
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#9
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Senior Member
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
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Re: Working thread - what do you think the HER2+ standard of care should be really?
jra40 and Donna are totally spot on, and not just for us HER2 gals. I think we all have felt like complete afterthoughts after active treatment. My primary care doc was willing to do my follow-up care but he admitted that oncology was out of his practice area and wanted my MO to let him know what he was looking for. If that had happened then maybe my brain tumor would have been caught sooner.
Since I have been diagnosed as stage 4 they have gotten more interested in me by far, paying customer and all, but they still had no idea how to handle this disease progression which has always been entirely logical and could have been anticipated.
Last edited by agness; 05-14-2016 at 04:41 PM..
Reason: Remove sig
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01-07-2016, 03:32 PM
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#10
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Senior Member
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
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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.
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01-07-2016, 06:11 PM
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#11
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Senior Member
Join Date: May 2014
Location: San Diego
Posts: 411
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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
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01-07-2016, 09:04 PM
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#12
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Senior Member
Join Date: Mar 2014
Posts: 95
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Re: Working thread - what do you think the HER2+ standard of care should be really?
Just a quick one re brain scans and lymph node involvement... I did not have cnfirmed lymph node involvement (the tisseu thatvwas taken out as sentinel turned out to not be a lymph node at all). It is unclear why / how - theory is that my tumor may have been connected to lymph nodes under the sternum, even though it was located "at the top of" the breast - basically across above the nipple. However, none of those was ever abnormal in any of my CT scans since diagnosis.
Nevertheless here I am with numerous brain mets not even 2 years after MBC diagnosis de novo. I say: You HER2+? Get brain scans. Regularly.
Then again: this topic is now near and dear to my heart...
__________________
Annette
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03/2014: Diagnosed with ER/PR-, HER2+++ MBC (bone mets, oligometastatic)
04/2014: Started 6 cycles of "PHD" (Perjeta, Herceptin, Docetaxol)
07/2014: Finished 6 cycles of PHD; restaging; 2 bone mets are sclerotic - looks like Herceptin and Perjeta is working
10/2014: STABLE!
01/2015: STABLE!
04/2015: STABLE!
08/2015: STABLE!
12/2015: BRAIN METS. BODY STABLE.
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01-08-2016, 09:39 AM
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#13
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Senior Member
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
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Re: Working thread - what do you think the HER2+ standard of care should be really?
My brain tumor tested positive for GATA-3, usually found in luminal (HR+) breast cancer types -- but I'm all HER2+/HR-. A cancer researcher told me that platinum based chemo was less effective and not needed really with this mutation. Carboplatin has the secondary action of depleting magnesium firing treatment but my magnesium levels were crazy loe at time of diagnosis and stikl out of range until I really researched magnesium replenishment and used a multi-approach that makes cal-mag supplements pale in comparison. This makes me think that I didn't need Carbo at all, TCH might have been enough in my case.
This is another time where up front nutritional assessment coupled with data and research can save $ and patient pain and suffereing. I have tinnitus in my right ear from carbo, plus I can't take aspirin anymore and it made my limbs weak for a couple months after treatment was done.
Why not test for GATA-3 up front, why waituntil there are mets?
__________________
- 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.
Last edited by agness; 01-08-2016 at 09:40 AM..
Reason: Clarifying
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01-08-2016, 11:48 AM
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#14
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Senior Member
Join Date: May 2014
Posts: 307
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Re: Working thread - what do you think the HER2+ standard of care should be really?
Are there typical signs of brain mets? I feel like I need to do as much recon and intel gathering on my own rather than expect my onc to be on top of everything!
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01-08-2016, 03:46 PM
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#15
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Member
Join Date: Aug 2014
Location: Atlanta, GA
Posts: 14
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Re: Working thread - what do you think the HER2+ standard of care should be really?
Hi Agness, I have looked at posts and not commented for years. I have always felt like since I was just stage one that I would stay in the shadows, but I am beginning to sneak out a little!!
I was very frustrated from diagnosis that there was not more support about the particulars of Her2.
When initially diagnosed, a friend of mine from middle school got in touch. She was SO helpful and had completed her surgery and treatment for stage 3B Her2. My friend was such a support and made clear to me that her cancer would recur. It has and in a big way. Brain, liver, and bone mets. She is an amazing friend and has done everything possible to beat this disease.
Together, even before her recurrence, we sought out additional guidance regarding diet, supplements, lifestyle changes. I have always come to this site for information.
I will never forget scheduling an appointment with a nutritionist at a breast cancer support center in Atlanta. I was thrilled to have found it and was looking SO forward to my appointment. The nutritionist pulled out the food guide pyramid. I kid you not. That was all she offered. Well, and to walk 30 minutes every day.
Eventually, my friend found an integrative professional with expertise in Chinese medicine in Atlanta (Piedmont Hospital) and we have both gone to him. I am very happy to have something else I can do in the way of supplements to decrease the possibility of a recurrence.
Scared that watching the CA 27-29 number is not enough.
You guys are so special and this site means so much to me. I speak for the many others that have never posted, although they depend on your advice so much!
__________________
Diagnosed June 2012 (Happy 50th Birthday :-/)
IDC 1.5
Lumpectomy / removed 9 nodes, all clear
Add'l surgery for clear margins
ER+/PR+ 95%
Her2+++
Chemo TCH Started August 2012
Radiation began February 2013
Tamoxifen - almost 3 years
Arimidex - began December 2015
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01-08-2016, 08:00 PM
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#16
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: Working thread - what do you think the HER2+ standard of care should be really?
Thanks for starting this thread. My two and a half cents:
As far as brain scans, if you are early diagnosis, it seems like ONE baseline PET/ct and brain MRI is reasonable to make sure your disease is "just" local, even with node negative, it seems reasonable for your onc to stage you for certain this way. Some docs also do a bone scan - still don't know why they need bone scan AND Pet/ct.
IF YOU ARE METASTATIC or have ANY type of recurrence, after completing initial treatment, I would insist on another PET/ct and BRAIN mri for safety sake. YOU DON'T WANT TO WAIT FOR SYMPTOMS OF BRAIN METS. Find those crappers before they find you.
Also, make sure your surgeon sends your tissue sample/biopsy for an in-depth molecular profiling - some places have very specific rules for submitting fresh tissue, they have kits, depending on your location. Your ONC should be familiar with this VITAL step!!
Lastly, I would recommend starting a notebook, with dividers, and BE METICULOUS in getting copies of all of your test results, copies of scans, and flow sheet to show treatment records. I was so glad I did this from the beginning, and I am still amazed at how much I forgot about those early years of hell
As a 20 year survivor, including 8+ year stage 4, there is no way a doctor can review my charts and give any opinion, wether it be a first opinion or second opinion. I keep a word doc that I call my "patient overview" - all pertinent info from 20 years on 4-5 pages. That way, I can easily print out a copy or email for second opinions. Similar to my signature, line item style, year by year with only highlights. Then, if a doc wants to see a specific report, I have my notebook handy with those copies.
Well that's it for now. Thanks again for compiling!!
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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01-09-2016, 06:42 AM
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#17
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Senior Member
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
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Re: Working thread - what do you think the HER2+ standard of care should be really?
Ideally we are going to catch brain mets before they progress like in me and freakzilla's girkfriend but the reality, when you look at both of our cases, is that we both recurred after craniotomy. I was not on any drugs when I had to have brain surgery snd I think she wasn't either. The CSF levels with Herceptin are barely anything though and we know systemic therapy won't stop brain mets. There are lots of case studies in pubmed and some of these breast cancer forums of HER2 gals who had brain mets found during Herceptin treatment as well. I think that it just depends on how late you are disgnosed and how fast your cancer cell line moves.
Anyway, back to what we saw with me and our other craniotomy patient this summer, if you have a HER2 tumor I think it is safe to say that surgery will create disease spread. We both had evidence of recurrence in the tumor bed within 6 weeks post op. The standard time frame for SRS brain rads here in the States is 4-6 weeks after surgery. The thing is that you feel like shit after having had your head cracked open so even 4 weeks feels aggressive to the patient. It can help but I don't think its enough as HER2 is responding to nornal growth hormones in the body and going nuts. Plus, MRI is completely inaccurate unless there are more than 109 cells massed -- if disease is spreading like a film on your brain they can't see it until it starts to mass up.
Here's my rough list for patients with HER2 brain mets needing surgery:
1) try to zap the tumor before surgery if you aren't on death's door. It is a developing practice and it might not be enough but at least you are trying to thwart inevitable disease spread. After consulting with the head of radiosurgery at Swedish Hospital this week I think this can be done, she mentioned that neurosurgery and oncology wouldn't really start their or consult with them about this. I know that this can be the truth in different discipline areas -- such as fibroid embolisation done by an interventional radiologist won't bd offered by an OB/gyn even if it is better for the patient. My tumor board included all oncology disciplines however so you might need to consult outside on your own if you can. They missed me and I was given 24 hours to live, not much wiggle room there.
2) get on a keto diet ASAP to lower CSF glucose and start challenging cell lines metabolically. We can't affect our levels of growth hormone yet but our cancer cells are obviously seeking out the shelter snd high sugar levels found in the CNS and we can alter that environment to slow them down.
3) get SRS after surgery should include a much larger margin than usual. In the cerebellum this wasn't too hard as it isn't involved with thinking and feelings and stuff. In the cerebrum this might be harder. I do know from my consults this week that there are radiation treatment options that can just treat the surface of the brain, I'll ask to see if it is the Tomotherapy machine or a different one. Each facility has different technology available and they don't all have the same capabilities. You might be offered what is available and while good it might not be best for your situation. The one good thing is that it looks like my tumor did respond to SRS as there was no noted recurrent there, so rads can help. Partial brain irradiation like I'm getting might be worth it if you stop disease and don't need WBR.
4) the standard currently is to scan three months later, with HER2 this is too long. I had post craniotomy scans at 6 weeks for SRS planning, then 6-7 weeks post rads, then 30 days, then 30 days -- and the disease kept spreading. It was only after that last scan that they diagnosed me and were willing to do IT Herceptin.
5) IT Herceptin helped me, but the problem is that there was disease massing in the folds and crevices of the cerebellum, hiding from my body and treatments. Getting started with IT Herceptin sooner can stop this from happening -- heck it might even make SRS and WBR a thing of the past for HER2 gals. I asked for IT Herceptin in my post-op visit a month later and was declined, "we might hurt you. There's no evidence of diseas. We don't know what we are treating." and so forth. Again, they can't see it on the MRI, there is a huge rate of recurrence with HER2 after a craniotomy, getting an Ommaya port placed was super uncomfortable but it was better than being treated with watchful waiting by oncology professionals who don't seem to be able to read their own films and it was way better than having my brain nuked with WBR after they started shitting when they realized it was there. The fact is they couldn't see why my facial nerves hurt and were causing intermittent numbness, they also can't see anything that would make them resolve. I tell them though that it isn't my problem that their imaging is imperfect and the reality is that those pains went away after we started IT Herceptin and haven't come back.
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- 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.
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01-09-2016, 06:53 AM
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#18
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Senior Member
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
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Re: Working thread - what do you think the HER2+ standard of care should be really?
Another one...
Dexamethasone is given to reduce cerebral edema, and it is amazingly good at that. The problem is that it increases your blood glucose and lowers your immunity which are the two things that are going to make our brain mets more active. Boswellia Serreta is used by patients with primary brain cancer and some radiation oncology professionals are familiar with it. Based on my own trials with it, 1200 mg daily (2, 300 mg capsules taken with meals) is equivalent to lowered standard doses given post craniotomy. You can take both Dexa and Boswellia at the same time however and they don't cross react. So taper off the clinical dose safely and as quickly as possible after brain surgery and use mostly Boswellia.
My naturopathic onc wasn't up on his dosing as much but he did know that you could mix the two and also that Boswellia Serreta (a form of frankincense), as with most Ayurvedic herbs, is best taken in combination. The formula I use is Boswelya Plus. You will pay about $20-30+ for a good formula; stay away from the $7 formulas. It has the added benefit of being good for arthritis, they discovered pre-arthritis in my shoulders post chemo this summer during a bone scan and I am not on hormonal therapy and I got my period back -- so yeah, it was the chemo.
Last edited by agness; 01-09-2016 at 06:54 AM..
Reason: Remove sig
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01-10-2016, 05:08 AM
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#19
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Senior Member
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
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Re: Working thread - what do you think the HER2+ standard of care should be really?
I want to see more comprehensive immune boosting work done on HER2 patients. I met another gal on BC-org and she had been trying to burn the candle at both ends with a small child to care for as well; her story sounded too familiar.
The problem is that oncology doesn't look to healing the patient, even as studies show that HER2 does have immunological roots that help it to be an easier target in some ways for immunotherapy.
But many of us are depleted and it doesn't show up in their CBC and they give us standard therapies that sometimes are poorly targeted (see above where logically I didn't need carbo), and taking the wrong things while not building up the system of the patient just weakens the body against the disease.
Magnesium is huge for healthy liver functioning and yet chemo and carbo deplete magnesium. Your liver is what helps support your fights cells in your immune system. Docs don't check and don't know how to restore magnesium.
We need to do everything to elevate the patient's immunity.
Improved gut function is important too. Chemo is way worse than antibiotics but I met others, even on TCHP who were told by their docs not to take probiotics. My naturopathic onc and a dear friend both said take a break the week you are doses and then use those two recovery weeks to restore. I took probiotics and ate probiotic foods. Recently I've added resistant starch, plus I take magnesium ongoing even though Zive been in range since June 2015.
The gut is important in magnesium and Vit D absorption, it is also critical in using zinc-based digestive enzymes to help bind ferritin the in gut for storage and use in the liver.
I have seen that it is gut-liver-pancreas dysregulation that is the cornerstone of this cancer. They have to shift their approach to be to heal patients bodies. This is science but oncology had completely shirked it.
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01-10-2016, 05:24 AM
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#20
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Senior Member
Join Date: Mar 2014
Location: UK
Posts: 563
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Re: Working thread - what do you think the HER2+ standard of care should be really?
Just wondering-
Should there be a new thread started for info/thoughts etc on boosting immune system, diet, supplements etc.
Unless I research myself I get absolutely no extra info/discussion from Med team.
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