HonCode

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

Reply
 
Thread Tools Display Modes
Old 09-29-2015, 09:11 PM   #1
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Question Treating/monitoring central nervous system mets

Here is what my plan looks like at present. Reading how patients are suddenly told they have 3-6 months to live freaks me out and makes me wonder if we are all monitored the same way. How quickly does HER2 spread anyway?

For my HER2+/HR- disease progression, CNS as the first site of mets after a PCR to systemic therapy:

1. Craniotomy to remove cerebellar tumor (3.5x5cm)
2. 5 fractions LINAC SRS to tumor bed
3. Lumbar punctures to look for leptomeningeal advancement (2 draws done, taking a break for a month and then proceeding every month or so)
4. Periodic whole brain MRIs looking for suspicious changes (1 to diagnose tumor, 1 post surgery, 1 pre rads 6 weeks later, 1 five weeks after rads, plus more)

No targeted therapies or chemo at present, brain was the first site of metastasis. Neuro-onc leaning towards systemic Herceptin again, no plans for treating high risk recurrence to CNS until signs of disease emerge.

Clinical trials seem to be designed for either before brain mets occur at all or when there is disease advancement but nothing to treat if you are presently NED but have had CNS involvement.

What about you?
__________________
  • 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; 09-30-2015 at 12:49 PM.. Reason: typos
agness is offline   Reply With Quote
Old 09-30-2015, 11:20 AM   #2
tricia keegan
Senior Member
 
tricia keegan's Avatar
 
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
Re: Treating/monitoring central nervous system mets

Agness I'm sorry you're dealing with this and have no advice but I'm sure others will be along to advise you more soon, good luck with your treatment.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
tricia keegan is offline   Reply With Quote
Old 10-01-2015, 09:00 AM   #3
Rolepaul
Senior Member
 
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
Re: Treating/monitoring central nervous system mets

Let me know if you want to respond in this thread or the other one I just responded on.
Rolepaul is offline   Reply With Quote
Old 10-01-2015, 09:29 AM   #4
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: Treating/monitoring central nervous system mets

Hi Paul,

Here Im looking for what standard monitoring looks like, to help brain mets patients establish their own standard of care.

I have read of folks getting whole brain MRIs every 6 weeks or 3 months -- quite a span. (I also read that MRIs are only 70% effective for diagnosing brain mets spread)

I have read that 1 lumbar puncture is 45% accurate, three are 90% accurate, six are 95%, and 12-16 are pretty definitive for leptomeningeal spread. But how frequently are they done? I tried once a week and ended up with a spinal fluid leak it seems, plus a sore back and headache.

Do folks try Kadcyla or TDMI first? Is it ever evaluated with a lumbar puncture for blood-brain barrier penetration? Do you have to go down the systemic therapy path and show disease progression before you are able to try something different?

Do folks get their tumors genetically tested sometimes? Always? Does it factor in to treatment decisions made by the team?

Inquiring minds want to know
__________________
  • 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 10-01-2015, 10:16 AM   #5
Rolepaul
Senior Member
 
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
Re: Treating/monitoring central nervous system mets

Here Im
looking for what standard monitoring looks like, to help brain mets patients
establish their own standard of care.

I have read of folks getting whole brain MRIs every 6 weeks or 3 months -- quite a span. (I also read that MRIs are only 70% effective for diagnosing brain mets spread)

Probably 90% once it gets to a point of being over 0.5 mm in any direction.

I have read that 1 lumbar puncture is 45% accurate, three are 90% accurate, six are 95%, and 12-16 are pretty definitive for leptomeningeal spread. But how frequently are they done? I tried once a week and ended up with a spinal fluid leak it seems, plus a sore back and headache.

LP for glucose, protein and cells are very good. It takes someone that is skilled in doing the analysis (ie more than ten patients that they have looked at and not just relying on literature.)

Do folks try Kadcyla or TDMI first? Is it ever evaluated with a lumbar puncture for blood-brain barrier penetration? Do you have to go down the systemic therapy path and show disease progression before you are able to try something different?

Some people try TDM-1 first and gte decent results. It depends on how big the lesion is in the brain. The level of TDM-1 or Herceptin in the brain is 2-3% of the level in the blood. And yes, you have to show progression before they change procedures. That is probably for the better as Ommaya reservoirs are not something to be taken lightly.

Do folks get their tumors genetically tested sometimes? Always? Does it factor in to treatment decisions made by the team?

Always. Required by the AMA as part of an FDA "suggestion". Most teams do not know the options that are available and cannot help the patient. I am working to try and let as many of these teams know of the IT Herceptin (and maybe Perjeta) option. This is something that a patient with LM involvement can ask for through the compassionate care act that was developed for AIDS patients. I just am trying to make it more public.

I am also trying to get dosing, frequency of dose, and systemic treatment for patients information to those in need. I cannot publish, visit doctors, nor write the referrals for treatment. That means patients and their families have to rely on someone they have never met and have no background about. My background in drug research, drug development bench to market, helping with my wife to get her BS in Nursing, and getting her Clinical Trial Coordinator certificate. I have contacts at drug companies, cancer centers, and government institutions. I have a very unique background.

By the way, I am doing this for Lymphoma and Melanoma patients as well. I am just someone that wants to help people in trouble because I know how hard it was when everybody told me that Nina would die and there was nothing to be done. She is proof that this was not the case.

She looks good in her yoga outfit four nights a week as well.
Rolepaul is offline   Reply With Quote
Old 10-16-2015, 02:04 AM   #6
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: Treating/monitoring central nervous system mets

I'm Some suggested systemic chemo regimes for those NED after craniotomy/radiation. Treatment would be for the rest of your life, switching regimes as required.

Tykerb/Xeloda - taken orally Start at lower dosage and increase.
Side effects include diarrhea, hand and foot syndrome, headaches and rash

Kadcyla (TDM1) - infusion
Side effects include elevated liver enzymes and anemia

Herceptin - infusion

Herceptin/Lapatinib - infusion
__________________
  • 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; 10-16-2015 at 02:06 AM.. Reason: Correcting thought
agness is offline   Reply With Quote
Reply

Tags
brain mets, progression, treatment

Thread Tools
Display Modes

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 01:46 AM.


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