Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Repeat MRI scans show that full remission has occurred. Two residual spots are Gamma knife scarring from December 2009 to a high degree of confidence. Nina is walking five miles per day, is doing yoga four days per week, and is performing all her previous activities without any side effects. First time ever at MD Anderson. I hope this gives a potential road map for others. All it takes is knowledge, determination, and good doctors. Luck was also important for Nina.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Stellar news. I just love this thread.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Feb 12 results as good as October and December. That means at least four months (and probably longer) with no brain or systemic disease seen. Almost ready for the happy dance, but Nina is pretty scared. She has five tough years of fighting brain mets (although the last 2 1/2 have been very positive). No spinal disease seen since May of 2012, almost four years. How do I get her to think in terms of ten years out and not two months until the next MRI scans? She is healthy and wants to go give massages to keep her spirits up and help bring extra cash into the house. We can definitely use it.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Very happy for you and Nina !! Thanks for sharing this great news !!

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

MRI and CT of today - shock!

3 new lesions can be seen for the first time in over 2 years, 7mm, and 2 others of 4mm.

We have been on IV herceptin 6mg/kg for past 21 months. Now back to problems!

I would like to ask anyone of what can be done except IT herceptin, anyone is doing IT pertuzumab yet?
Does TDM1 work for the brain?

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Ask to have 0.4 mg of topotecan in 5 mls of sterile water added to the treatment. Do not use TDM-1 as the non-Herceptin part is too damaging. University of Southern California in Los Angeles is getting ready to run Pertuzumab for IT shortly. Contact them today. Eric Chang would be one of the ones to try to meet.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Thank you Paul, my oncologist in Europe is researching on best way to go, till next week and then we decide from there. Will tell him about the topotecan.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Marvin, I would have them start the Pertuzumab at 40 mg for a few weeks and then go to the same level as you were having done with the IT Herceptin. Also, I wonder if you go back on the IT Herceptin whether that stops progression.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

But has it already been tried intrathecally?

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

No, but I know what the protocol will be. That is part of something not public. It goes along with the Herceptin not tried at the higher doses prior to January 2012 for people like Carol and Nina. I would look at the Toptoecan and Herceptin as the clinical trial might yet be open.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Our oncologist seems to favour for IT herceptin at 150mg again as we did before before trying anything else. Now Carol weighs only 65 kg, so it is a very high dose, 2.3 mg/kilo.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Ask him to think about toptotecan as well. He can ask Dr. Loghin at MD Anderson Brain and Spine in Houston Texas.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

First intrathecal herceptin done last friday 6th March after 21 months without any such treatment.

Dose 150mg herceptin and 50mg hydrocortisone.

No pain or funny feelings. All went well, not even painkillers or dexamethasone were needed.

At the moment this will be the only treatment till we scan again in 12 weeks.

Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Mario,
That is great news. Send my wishes to Carol.
We are still trying to get to Malta on a trip. I am halfway through working in Omaha during the week and driving home to Denver on the weekends. I get $500 more than it costs, so I am trying to bankroll a trip out of this to Italy.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Hello,

I was just coming to look for this thread, and here it is front and center. I could use some help!

With a previously treated brain metastasis possibly growing ( unknown if its growth or necrosis) on my latest MRI's, plus a new 9 mm spot very close to it, I am trying to figure out how best to proceed with treatment. I have had stereotactic radio surgery- once to this older spot, and once to another spot that has shrunk.

I mentioned IT Herceptin to my Oncologist, who was very open minded about it. It has not been done in my treatment facility, and he has many questions about it. Is there a doctor who would answer his questions such as dosage, and pre-meds, side-effects, etc.? Or should I seek out going somewhere for treatment? I live on the border of North Dakota and Minnesota, and have had great treatment here so far.

For now they have referred me to a Neurosurgeon for a consult, but I am open to suggestions, any help you can offer. Thank you!!

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Vicky leptomeningeal metastases are those that sit on the outer linings of the brain and spinal cord. Cerebrospinal fluid circulates within those membranes.

If your brain mets are not near the outer (or inner) linings of the brain, it is unlikely IT herceptin can get to them as I understand it.

Please be certain to clarify where your brain mets are and how far from the CSF they may lie.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Lani,
Actually, at the doses that were used with Nina and Carol, three of the deep brain patients had good results. It just means that steroids are needed to keep the swelling from causing problems. It is not easy to get patients treated, but there have been three that I am aware of that all had good results. IT does work better on leptimeningeal cases, but there is pretty good evidence that these higher doses are giving positive results as well. As always, Gamma Knife should be the first choice if the lesion is smaller than 2 cm and not near critical function areas. I get information that is not yet public knowledge. That is what I do for a living. There are overseas locations that are not always Medical Industry or medical research friendly until a leader's wife/daughter/mother/granddaughter has an issue.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Thank you Rolepaul, and Lani for your insight. I appreciate the sharing of info that can me figure out all of my treatment options and to navigate this tricky time as best as I can.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

MRI of yesterday:

All three spots gone and none new seen, thank God.

We have done 10 IT herceptin till now each of 150mg herceptin, and 50mg hydrocortisone, each shot every 10/11 days, i.e. 2 times every three weeks. We also did 6mg/kg IV herceptine every three weeks.

Will continue same treatment for another 3 months, and MRI again.

Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Mario,

Thanks for sharing your good news! Looks like this treatment is working. I'm very happy for you.

Take Care,
Brenda