Advice for Her2/neu 3+, Solitary Brain Met growing despite Gamma Knife

[supermehra]

Hi,

I am seeking to help my Mother who is 59 years old. We live in New Delhi, India. Treatment here is quite good, however, often doctors are not as forthcoming as the west (mostly cause they see too many patients I think).

Following is her history:

1. Originally diagnosed in Oct 2001 with HER2/neu 3+ Ca Breast, ER & PR negative. Suregery - lumpectomy with axillary clearence. Followed up with 6 cycles of chemo - Adrimycin, Endoxan (Taxol) and 3 weeks of local radiation therapy.

2. Metastasis detected to Sternum in 2004 (probably earlier, but mom was in denial). Treatement started in Aug 2005 - 6 cycles of Herceptin & Taxol (3 week regime), 3 weeks radiation. Treatment ended in Feb 2006.

3. Developed solitary brain met, right frontal lobe in Jun 2006. Substntial size of 3.2cms - it wasn't there in July 2005 MRI scans. Rest of the body is clear - guess Herceptin did its job. She only got 6 doses last one in Feb 2006.

4. We went against convention of treating large tumours with surgery, instead opting for Gamma Knife radiosurgery... largely cause of mom's mental condition and since the radio surgeon felt very very positive about it.

5. She was evaluated in Sep 2006 for admission to a GSK Lapatanib trial in Mumbai, India but a panel felt that she needed no fresh treatment unless the radiosurgery failed. Hence no further treatment was given other than decsamethasone (very high dose) and anti-convulsants for symptoms.

6. She has been re-evaluated on 23 Feb 2007 and the lesion has become necrotic in the middle and probably dying, but a new peripheral band is developing quickly. The interval disease is now a 0.5cm band pushing at the motor-cortex. There is also considerable edema though she is physically ble to walk unaided and is unaffected on right side of the body - lesion is on the right side next to motor cortex.

Opinions of oncos (i am consulting 2 now) and neuro (again consulting one radio and one conventional surgeon) are:

1. Surgical extraction (accompanied with a 5-10% risk of paralysis) to relieve immedate symptoms; followed by nanoTaxol, Herceptin and Carboplatin. Lapatanib if/when it becomes available.

2. A seperate onco says don't risk the surgery, quality of life more important. He recommends trying temodol (temozolomide, also know as temodor) which is a primary brain drug but has one of his Ca Breast patients responding. Also talked about combining CCNU (?). Also open to restarting Herceptin to keep everything else at bay. Dismissive of Carboplatins, Xeloda.


Quality of life is key. However, I have read enough survivor stories for HER2-3+ patients to also know that if solitary met is treated aggresively survival can be high 5-8 years

My questions are as follows:

1. Conventional surgery yes or no?
2. Anyone used temodol/temodor for Ca Breast Brain met? Any success?
3. Any advice on Xeloda, Carboplatins for HER2 3+ ER, PR negative?
4. Any news on Lapatanib that will significantly improve mom's condition?
5. Anyone tried CCNU for Ca Breast? Did it work?
6. Any other ideas are welcome...

Thanks.

[heblaj01]

Supermehra,
I can only comment on your item 6.
One of the possible low toxicity treatment is Boswellia Serrata supplementation (a ayurved herbal treatment). If you search this web site you will find more info.
An other experimental treatment tried in a few cases in Germany & the US is the injection in the spine of Herceptin to overcome the blood brain barrier.
This barrier may also apparently be partially overcome if Herceptin (given as a regular I.V. infusion) is administered concurrently with radiotherapy of the brain.
Finally, once Lapatinib is approved ( in the US this could be this coming March), oncologists may be able to prescribe off label the combo Lapatinib+Herceptin which in phase 2 trial is showing high response rates.

[Barbara H.]

Hi,
It is diffiucult to distinguish necrosis from tumor tissue unless you do surgery. I will be 59 in April and have had three surgeries for a solitary prefrontal brain met starting in May, 2004. The other two surgeries ended up being just necrosis.
Good luck with your mother's decision.
Barbara H.

[supermehra]

First many thanks all - especially Saurabh Kapoor who actually called me the other day to discuss mom's case.

Met the radiologist today and they hve advised a CT-PET to get a clearer view about the necrosis vs tumour progression. There is some precedence of success with the PET.

Any thoughts on the other questions:

2. Anyone used temodol/temodor for Ca Breast Brain met? Any success?

3. Any advice on Xeloda, Carboplatins for HER2 3+ ER, PR negative?

4. Any news on Lapatanib that will significantly improve mom's condition?
>>>> Many thanks to Saurabh Kapoor for the news that Lapatnib may be available Mar 2007 ie. this month!


5. Anyone tried CCNU for Ca Breast? Did it work?

[supermehra]

The herceptin in the spine sounds interesting... couldn't find anything on google... any reference sites?

[Julie2]

Pattyz has good success with Temodor I think. Please check with her.

Julie