brain mets update -- follow-up

[Emmay]

While Temodar/Sorafenib worked well in holding back brain mets in my sister from Feb07 - Sept07, slight indications of growth eventually appeared on the MRI.

She then switched to Tykerb/Xeloda, but after 4 months the MRI showed slight new flaring... Hoping it was necrosis, we waited for the next MRI 6 weeks later, which showed more pronounced enlargement of areas which had already been treated by Cyberknife. A biopsy was done to determine if the MRI was showing new disease or necrosis. Unfortunately the biopsy showed both necrosis and growing disease, so she is back on Decadron to control swelling and headaches, and has changed medications.
(Her vision has also been affected, and she has an appt. with the hospital ophthalmologist coming up...)

My sister had her first infusion of two new agents, Irinotecan (aka CPT-11) and Avastin, over 2 weeks ago. So far she is tolerating the new chemo fairly well -- the side effect is mostly increased fatique.

I'm sorry to have to report my sister's disappointing results on Tykerb/Xeloda, but want to keep this board informed of new therapies as they are tried. I've found the information shared on this site invaluable.

Emmay

[Jean]

Emmay,
I am sorry to hear your news of your sister.
I will keep her in my prayers that her new chemo trt.
will halt progression.

Blessings,
Jean

[Mary Anne in TX]

Emmay, I wish the news about your sister was better...much better! So glad she has you on her team! And thank you so much for letting us know and about the new meds she is on. Please keep us up with the results and how she is feeling. Love to you both, ma

[chrisy]

Emmay,
sorry to hear your sister's news was a mixed bag. But it shows the importance of diligent follow up. Good luck on the new combo.

Love,
Chris

[dhealey]

Thank you for keeping us updated. Will continue prayers for your sweet sister.

[pattyz]

Hi Emmay,

I'm sorry your sis is experiencing symptoms from her brain mets and accompaning side effects from her tx's.... If only she could get a break and drop atleast one of these issues!

From the reading I've done, I had thought Avastin was CONTRA-indicated for those with brain mets? I know your sister's onc is really an outside the box person, much to your sisters' advantage.... but still, Avastin can cause bleeding in the brain mets scenario.

Ok, also wanted to report to YOU that I've been on the combo of Xeloda/Temodar in various dosages/schedules for just shy of 3 yrs. Tykerb was added last Oct.

In that time, my current 6-8 brain mets have shrunk, progressed, remained stable and back again, many times. There are three lesions that each measure 1cm now, including one on my pons/brainstem. The remainder are somewhat smaller.

Each time I have to think: what next? as far as treatment goes. Your reports on your sister's experience are a part of that information for me, and I thank you.

Many hugs with good wishes to you both,
pattyz

[Sherryg683]

I am so sorry to hear this news. I will include your sister in my prayers..sherryg683

[Joan M]

Emmay,

I'm sorry to hear about your sisters MRI and biopsy results. I'm praying that the new treatment will work.

Best,

Joan

[Emmay]

Thanks to each and every one for your kind words and thoughts.

PattyZ, thanks especially to you for sharing your course of therapies. I too had read about the concerns about Avastin, and worry about it, but also have read some reports that support its use for recurrent bc brain mets.

http://www.asco.org/ASCO/News/Cancer+News?&reuterview=detail_view&reutersid=10596

http://www.abstract.asco.org/AbstView_55_34611.html

http://www.abstract.asco.org/AbstView_55_34386.html

(I have read that Ted Kennedy's doctors are considering Temodar and Avastin as a chemo combination for him.)

My sister is tolerating the Irinotecan/Avastin well so far --just fatigue the day following infusion. She is also continuing Xeloda.

I will be asking my sister's doctors about the possibility of trying Temodar again, but when she was taking Temodar and Sorafenib (which is also an antiangiogenesis agent) she did not tolerate it well, and was consistently losing 3-5 lbs/month.

A lot will depend on how her next MRI looks toward the end of the month.

You and your doctors have done a remarkable job juggling therapies and adjusting as needed -- it speaks well for your knowledge of your own body and following your instincts about what you need. You are inspirational; I wish you continuing success! - and will keep posting as we learn more.

Emmay

[pattyz]

Hey Emmay,

My eyes aren't so hot anymore... I didn't find one reference to bc brain mets in the links you posted :( Only recurrent primary brain cancers from what I 'saw'...

xoxopatty

[Emmay]

Dear PattyZ,

So sorry for the misleading title. The first article is about Avastin and recurring brain cancer (not breast cancer mets to the brain); the second article notes that of the patients with metastatic breast cancer, 6.7% had CNS (central nervous system, incl. brain) mets- all were treated with irinotecan and bevacizumab(Avastin); and the third article is about Irinotecan and Avastin as treatment for Malignant Gliomas, a type of brain cancer, not bc mets to the brain.

I thought the articles were relevant to a discussion of bc mets to the brain because finding treatments that can cross the blood-brain barrier to arrest metastatic or primary cancers in the brain continues to be a challenge. I have a friend with melanoma mets to the brain, so I read the reports with her condition in mind as well as my sister's.

Emmay

[Lani]

intrathecal herceptin (ie given into the cerebrospinal fluid)

I have also posted information before on Boswellia serrata

here is an abstract with an email address
Journal of Neuro-Oncology
2006
10.1007/s11060-006-9248-4
Clinical–Patient Studies

A lipoxygenase inhibitor in breast cancer brain metastases
D. F. Flavin1

(1) Foundation for Collaborative Medicine and Research, 24 Midwood Drive, Greenwich, CT 06831, USA

D. F. Flavin
Email: Dana_FK@hotmail.com
Received: 23 July 2006 Accepted: 11 August 2006 Published online: 26 September 2006

Abstract The complication of multiple brain metastases in breast cancer patients is a life threatening condition with limited success following standard therapies. The arachidonate lipoxygenase pathway appears to play a role in brain tumor growth as well as inhibition of apoptosis in in-vitro studies. The down regulation of these arachidonate lipoxygenase growth stimulating products therefore appeared to be a worthwile consideration for testing in brain metastases not responding to standard therapy. Boswellia serrata, a lipoxygenase inhibitor was applied for this inhibition. Multiple brain metastases were successfully reversed using this method in a breast cancer patient who had not shown improvement after standard therapy. The results suggest a potential new area of therapy for breast cancer patients with brain metastases that may be useful as an adjuvant to our standard therapy.
Keywords Cancer - Lipoxygenase - Boswellia serrata - Oxidoreductase inhibitor - LOX inhibitors - Lipoxygenase inhibitor - Brain Cancer - Breast Cancer - Metastases - Breast Cancer Remission - Arachidonate: Oxygen oxidoreductase - Herceptin

Hope some of this helps!

[Jackie07]

Thank y'all so much for sharing the brain metastasis research result. As both a brain tumor (my three 'benign'[nothing that takes space in the brain can be benign - so it just means slow-growing and operable] tumors had stopped growing 4 years after the Gamma-knife RS, according to the MRIs since 2005) patient and a breast cancer patient, I felt very assured when I found those neurosurgeons' names on the advisory board.

Thank you, thank you.

[pattyz]

Emmay.... oh, Sweetie! I do the same thing re: any kind of successful tx for primary brain ca. I do research and then save to a folder on my desktop!

BUT, if the info directly relates to bc brain mets, then I have a "special" folder for that, you bet! There are several notations in there from your posts on your sister, too...

love to you both,
pattyz

[Emmay]

...when on Anti-VEGF Therapy (antiangiogenesis therapy) such as Avastin (and presumably Sorafenib, etc.)

This information was just posted 6/9/08 on The Musella Foundation website on Clinical Trials and Noteworthy Treatments for Brain Tumors:

http://virtualtrials.com/news3.cfm?item=4267

[pattyz]

Dear Emmay,

thank you so very much for this info. I think it's important enough to have a post of it's own. Have saved info for those 'just in case' next decisions.

with love and appreciation,
patty