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 05-02-2012, 10:44 PM   #1
marvass
Senior Member
 
Join Date: May 2012
Posts: 103
Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastases)

I have been searching this site amongst many others, for clinics that do Intrathecal Herceptin for Leptomeningeal Metastases in HER2+ Breast Cancer.

Till now I got information that there are two trials going on and recruiting at the moment.

http://clinicaltrials.gov/ct2/show/N...tuzumab&rank=1

http://clinicaltrials.gov/ct2/show?t...tuzumab&rank=2

Also found out that two persons have been treated in LA and TX.

Are there any more doing it?


Mario
marvass is offline   Reply With Quote
Old 05-03-2012, 12:22 AM   #2
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,800
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Hi Mario,

Welcome to Her2 support.

Below are two recent threads of previous discussions on the subject. More can be found by using the 'Search' fuction on top of the Board.

http://her2support.org/vbulletin/showthread.php?p=269040&highlight=leptomeningeal+m etastasis#post269040

http://her2support.org/vbulletin/showthread.php?t=50175&highlight=intrathecal
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
Jackie07 is offline   Reply With Quote
Old 05-03-2012, 12:49 AM   #3
marvass
Senior Member
 
Join Date: May 2012
Posts: 103
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Hi Jackie,

Many thanks for your help.
I had not seen greg's information on this but seen Lani's.
Have just learnt that doctors are doing this IT Herceptin at MD Anderson, Cedar Sinai and UCLA, not as trials.

Still looking for someone closer to us, NY.

Thanks again
Mario
marvass is offline   Reply With Quote
Old 05-03-2012, 10:25 PM   #4
marvass
Senior Member
 
Join Date: May 2012
Posts: 103
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

From what I learned in the last days that IT herceptin is working fine with most of who tried it. It kills brain mets HER2+ Breast Cancer, and its only a matter of a few months before this would be the first option for all that herceptin worked on them intravenous, and then spread only to their brain, because of the BBB. There are a few doing it right now besides the two trials, but still no one around NY !! Can't believe it, I'm sure there are... Let's hope I find out someone.
marvass is offline   Reply With Quote
Old 05-05-2012, 01:23 PM   #5
marvass
Senior Member
 
Join Date: May 2012
Posts: 103
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Got to know that in small dose, less than 50 mg it does not work.
At chicago trial the dose is low while in off protocol they are giving 100 mg or so and it is curing most of those trying it.
There are three papers talking about IT herceptin and they both conclude that it was successful. Simply cannot understand why not much are doing it.
marvass is offline   Reply With Quote
Old 05-13-2012, 11:02 AM   #6
Rolepaul
Senior Member
 
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 387
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Mario,

This is very frustrating for me as well! Did Carol end up getting treated in France? I am going to MD Anderson on 5/16 and can see if Carol would be able to get treated there.
Paul
Rolepaul is offline   Reply With Quote
Old 05-13-2012, 12:41 PM   #7
marvass
Senior Member
 
Join Date: May 2012
Posts: 103
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Hi Paul,
Still working to get somewhere, chicago still doing 10mg per week and then 10 mg every two weeks, think it does not do much.
France and MD Anderson still chasing, nothing at hand yet.
If you meet your doctor ask her if she is taking more for she gave us no reply in 10 days !! Even though the secretary promised a reply, because she was away all the time.

Regards
Mario
marvass is offline   Reply With Quote
Old 05-13-2012, 01:31 PM   #8
Rolepaul
Senior Member
 
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 387
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Mario,

I sent some contacts at Genentech and NCI to you. I will follow up with MD Anderson people on Thursdya or Friday of this week.

Paul
Rolepaul is offline   Reply With Quote
Old 06-10-2012, 08:06 AM   #9
marvass
Senior Member
 
Join Date: May 2012
Posts: 103
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

After all we got accepted both in france and chicago trial, but never went, because our oncologist decided that he will do it for us, because he believed that this was the best available.


My wife started 18 days ago on IT herceptin. Already took 30mg first week, then 30mg second week, and 50mg two days ago. No side effects except for a headache peaking two days after administration, which can be controlled through pain killers and light dose of steroids.


It looks like it is working because she already feels much much better. Well, we believe strongly that this is the best available treatment for breast cancer mets in the brain when you are HER2+.



Will keep you updated with next MRI in less than a month.


Mario
marvass is offline   Reply With Quote
Old 06-23-2012, 02:38 AM   #10
marvass
Senior Member
 
Join Date: May 2012
Posts: 103
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Here's an update:

Till now my wife took 30, 30, 50, 50 and 60 mg intrathecal herceptin together with some steroid, one dose every week, escalating this way, and 6 mg per kilo intravenous herceptin, one dose every three weeks. Side effects are none, not even a headache anymore. MRI will be done next week, will post results here. Fingers crossed.


Mario
marvass is offline   Reply With Quote
Old 06-23-2012, 05:10 AM   #11
JennyB
Senior Member
 
JennyB's Avatar
 
Join Date: Apr 2011
Location: Port Hedland, Australia
Posts: 381
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Fingers crossed
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
JennyB is offline   Reply With Quote
Old 06-23-2012, 05:58 AM   #12
karen z
Senior Member
 
Join Date: Apr 2008
Posts: 1,462
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

thanks for your post.
karen z is offline   Reply With Quote
Old 06-23-2012, 09:44 AM   #13
Rolepaul
Senior Member
 
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 387
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

I am staying touch with Mario as Carol, his wife, has a treatment method that is so monumental in how it is being done. This uses a method that should be able to be implemented very easily with existing methods and drugs. To be able to save potentially thousands of women a year with brain and/or spine HER+ involvement needs to be pushed by everyone who reads this forum.
Rolepaul is offline   Reply With Quote
Old 06-23-2012, 11:02 AM   #14
schoonder
Senior Member
 
Join Date: Jul 2008
Posts: 185
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Would neo-adjuvant t-dm1 after surgery reduce possibility of brain mets if treatment was effective in eradicating remnants of disease that are currently undetectable?

Would intrathecal t-dm1 make for an effective tool in treating her2+ brain mets?
schoonder is offline   Reply With Quote
Old 06-23-2012, 11:23 AM   #15
Rolepaul
Senior Member
 
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 387
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

No one to my knowledge has ever done TDM-1 via intrathecal administration means. If there is no brain or spine mets detected within seven years after mastectomy, there is a high level of faith that there will not be found later. The problem is that these is no absolute way to make sure that there is not any involvement in the brain and spine prior to that. If there is no lymph node involvement, that would indicate that there is also a low likelihood of brain or spine involvement. The difference between now and the past is that it is clear that the previous methatrexate and other "harsh" chemical treatments caused side effects that were unacceptable, with IT Herceptin now being tested by several individuals for side effects (and finding none).
Rolepaul is offline   Reply With Quote
Old 06-23-2012, 02:09 PM   #16
KDR
Senior Member
 
KDR's Avatar
 
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

How does this work exactly? What is the set-up? IV to the head or what?

Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
KDR is offline   Reply With Quote
Old 06-23-2012, 06:49 PM   #17
Rolepaul
Senior Member
 
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 387
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Intrathecal can be done through a lumbar puncture hole, but is more commonly done through an Ommaya reservoir. This is a small under the skin plastic bag (think mini IV bag) with a septum to add the medications and a tube that allows the solution to go through a hole drilled in the skull to the brain cavity. Past issues with irritation of the brain lining from the tube or medication are better understood and not as much a problem. The medications are then added through the skin with a needle the size of a vaccination, with little pain or risk of infection. The medication volume is offeset by first removing an equivalent amount of fluid from the reservoir, which than can be used to flush the solution in the line at the end of medication addition or sent to the lab for study of the CSF for blood cells, glucose (high is good), protein (low is good), or tumor markers (undetectable is great). This is on the side of the blood brain barrier that most testing cannot see. That is why it is such a great tool if brain or spine involvement occurs.
Rolepaul is offline   Reply With Quote
Old 06-24-2012, 02:26 AM   #18
marvass
Senior Member
 
Join Date: May 2012
Posts: 103
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Thanks everyone for wishes and interest.
We are doing this through lumbar puncture, which is just an injection through the lower back with little pain and takes just a few minutes a week. Then just a little dose of steroids, 2mg pill per day and that's it. Within a few weeks. then the time period is extended, I know of one doing it every 6 weeks and another planning to go for once every 3 months. When all is clear then I think that it must be done for a year or two and then stop completely. But this is still experimental. But I don't think there is anything more effective. Lets see the outcome of the results in 2 days!!
marvass is offline   Reply With Quote
Old 06-24-2012, 08:16 AM   #19
Joan M
Senior Member
 
Joan M's Avatar
 
Join Date: Oct 2007
Posts: 1,836
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Good luck, Marvass. I'm going to ask my neuro-onc about the procedure. When I first had a brain met in Oct 2008 I asked my former neuro-onc (who was at the same institution as my current one, but has since left), and he had never heard of it. I was a little surprised because it was at Sloan-Kettering. I was prompted to ask him, because I had read about a trial in Germany about intrathecal herceptin. That was the only information I could find about the procedure at that time. I wonder what the new neuro-onc will say.

I was treated with Herceptin at Sloan-Kettering for only about a year or so, but switched to another hospital a little over a year ago. However, I've had other services there and continue to follow up with them.

Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in January 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in October 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy October 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood February 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity. No cancer, only fungus. Still continuing on only Herceptin. Guardant Health liquid biopsy in February 2016 showed four types of mutations in TP53. NED for 9 years. Living with MBC for 10 years. Praying for NED forever!!
Joan M is offline   Reply With Quote
Old 06-24-2012, 10:21 AM   #20
marvass
Senior Member
 
Join Date: May 2012
Posts: 103
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Thanks Joan, I don't think sloan-kettering did it ever, but they might do it in collaboration with the trial in chicago, worth giving it a try.
Good luck to you too.
Mario
marvass is offline   Reply With Quote
Reply

Tags
brain lesions, clinics it herceptin, doctor it herceptin, intrathecal herceptin, it herceptin

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 07:09 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2017, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007
free webpage hit counter