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mickey
12-20-2005, 10:23 PM
It has been awhile since I have posted. I have had alot of problems lately Dec. 2005 I had successful Gamma Knife. But multiple mets showed up in May. I had 15 treatments WBR ended in June 2005. The next 2 followup MRI's were better. On Monday, I had another follow up that was not good news. more mets. My onc and th rad. onc think I should do wbr again with temodor. I am wondering about the trial with lapatinib. What do you collectively think? I am also worried about possible mets dropping and causing paralysis
Mickey

StephN
12-20-2005, 10:31 PM
Dear Mickey -
I was hoping that no news was good news and that all that fresh air from your walks was doing you some good.

The expert on the Lapatinib trials is Dr. Eric Winer at Dana Farber. Joe may have even more specific contact info. We met him at the Genentech reception in San Antonio. He seems to feel they are still in the investigational stage, but worth talking to him - I think your case is the kind he is interested in.
There was some study that shows a synergy between Herceptin and Lapatinib.

Then there is Patty Z here who is presently taking Temador and Xeloda for her numerous brain mets and having some success.

This is a hard call and I know some others will put in their 2 cents worth.

pattyz
12-21-2005, 07:34 AM
Mickey, I'm sorry to hear this... are your docs POSITIVE that there are new/active mets? Or COULD these be old lesions showing up as necrosis? That would be my first question.

And next: how many? How large? And do you have any symptoms? And location of these 'new' brain mets? And lastly, what is your current situation with any other mets?

Answers to these questions could determine more clearly what you might be able to pursue as treatment options. Personally, no, I would not be in favor of a second round of WBR. This is my history:

12-1999: Age 50, Dx'd Invasive Ductal & Inflammatory. Two tumors, upper and lower inside quadrants R/breast.

1-2000: Mast., 6/26 pos. nodes. ER+PR-, Heu2+++ StageIIIb - 4rnds A/C, no rads (my choice & no medical ins.)

7-2002: Dx'd mediastinal node/s mets, (surgical biopsy), 'spot' on lung and pelvis. Arimidex briefly.

9-2002: Dx'd brain mets. (mininally symptomatic) Two lesions, 1.5cm, 6mm. SRS focalized tx successful. Refused WBR.

11-2002: Navelbine/Herceptin 4rnds for systemic mets, scans show NED.

3-2003: Progression of brain mets. 14 new lesions visable. Asymptomatic. Continue to refuse WBR. "Watch and wait " approach. Treat in small batches with two more SRS, two CyberKnife procedures through 5-2004. NED in body.

3-2005: Progression brain mets - maybe 10 new lesions, asymptomatic. (otherwise NED) Again 'watch and wait' approach until...

8-2005: Dizzy 24/7 in the course of just one day. Begin Temodar/Xeloda.

9-28-2005: Following 2 rnds, MRi shows response of nearly 50% shrinkage in many brain mets, including brainstem/pons. Dizziness gone.

11-28-2005: MRi duplicate of previous films- after 4rnds T/X, mets remain responsive w/ more shrinkage nearing 50%. Continue Temodar/Xeloda.

12-19-2005: Onc confers w/rad onc re: past scans. Determine that some of the 'new' lesions are not new at all, but old treated spots just vaguely visable.

mickey
12-21-2005, 09:45 AM
I have had some symtoms, eyesight a little worse, but it could be from a lot of chemo. Weakness in arm but could be from my lymphodema. I know that it is dangerous to do a 2nd round of wbr and I want options. Please help.
Mickey

mickey
12-21-2005, 09:53 AM
You also asked if I had mets anywhere else. I now have skin mets only in the chest area. I have done chemo without success for it.
Mickey

mickey
12-21-2005, 02:39 PM
Talked to my onc twice today. I love him. He is happy that I am proactive in my treatment. The new Lapatanib trial opens in Seattle the end of January Until then I will go on Xeloda/temodor. If it appears to work I will stay on it. If I am worse, I might do wbr. Otherwize might die. Whaside effects do you have

StephN
12-21-2005, 11:15 PM
Dear Mickey -
I am SO glad you are going to try these new treatments. You still have options as you mentioned.

When you come to Seattle in Jan. for the trial drugs I hope to see you then. Which cancer center up here are you going to??

This must give you some peace of mind that you have an onc willing to work with you at this very pivital time.

Best blessings that these therapies will have the desired effect!

pattyz
12-22-2005, 08:09 AM
Mickey,
I'm really glad to hear you have such a good relationship with your onc!

Your 'symptoms' could indeed be from something else, so let's say that you're 'asymptomatic' for now.

Ok, the fact that your other mets are limited to skin is a good thing, really. That usually translates as better prognosis and the docs will 'react' to that fact in offering treatment options for your brain mets.

I'm on a personalized dosage schedule of Temodar/Xeloda that my onc designed just for me. I'm 5" 4', 116 lbs; I take 250mg Temodar once @ night for 7 days (1/2 hr after dose of Zofran; 2hrs after eating). Simultaneously, I take 1000mg Xeloda 2x's day (tot+2000mg, just after food intake) for 14 days. Then two weeks off, not just one.

I also do 100mg of B-6 2x's da, lotion feet and hands, esp. at night. But truthfully, can't say I have side effects at all. My skin is very dry, I have days of low energy, complicated constipation while doing the Tem/Zofran...but QOL is very good and it's WINTER here when skin gets dry and it's too cold to get decent excersize!

I'd hope you could get two months of tx with this combo with a follow-up MRi before you begin the trial... I will add the small study report from San Antonio last yr...there might be something newer around now.

And I still don't understand exactly why additional focalized treatment is not being offered. As was in my case, I had lots of brain mets, but dealt with them in small batches over time. There are many others who have had combinations of WBR and multiple focalized tx's.

Mickey, do you visit the bcmets.org site? Doing a search on brain mets would bring you tons of supportive information.

I'm glad you'll have the opportunity to be in the Lapatinib trial. I will take that info to my onc at next appt.

Here's hoping for good response in which ever tx approach you pursue.
bighugs,
patty (and below is that report):

SABCS ABSTRACT:
[San Antonio Breast Cancer Symposium]
[1079] Phase I study of capecitabine (C) in combination with temozolomide (T) in the treatment of patients with brain metastases from breast carcinoma.

Rivera E, Valero V, Francis D, Brewster A, Royce M, Esteva F, Murray JL, Pusztai L, Hortobagyi GN.. The University of Texas M.D. Anderson Cancer Center, Houston, TX


Background: T is an oral alkylating agent that is
currently being used for the treatment of primary
brain tumors due to its ability to cross the
blood-brain barrier. C has been approved for use in
the treatment of metastatic breast cancer patients who
have failed anthracyclines and taxanes. It is well
known that C crosses the blood-brain barrier and has
activity in the brain. Options are limited for
patients with brain metastases.

Materials and Methods: We evaluated the activity of
both drugs in combination for the treatment of brain
metastases not amenable to surgery. Patients were
allowed in the study if they had new onset brain
metastases from breast cancer, had declined radiation
therapy, and were neurologically stable. They were
also eligible if they had evidence of recurrence or
progression of brain metastases after whole brain or
stereotactic radiation therapy. C was started at 1800
mg/m2 in 2 divided doses. T was given at a starting
dose of 75 mg/m2 in one daily dose. Each drug was
given concomitantly every day for 5 days (day 1-5)
followed by 2 days of rest and restarted again for an
additional 5 days (days 8-12). Each cycle was repeated
every 21 days. We have enrolled a total of 16 pts — 6
pts at dose level 0 (C/T — 1800/75), 6 pts at dose
level 1 (C/T — 1800/100), and 4 pts at dose level 2
(C/T — 2000/100).

Results: Five pts had recurrent brain metastases and
had been previously treated with radiation therapy.
The median age is 51 yrs (range, 32-77). All pts had a
Zubrod performance status < 1. Ten pts were ER and/or
PR positive. No grade 4 toxicities have been reported.
Grade 3 toxicity includes headaches (2 pts), vomiting
(1 pt), constipation (2 pts), fatigue (2 pts),
nonneutropenic fever (1 pt). We have observed 1 CR, 1
PR, 6 MR, and 3 SD. Four pts did not respond to
treatment. One pt was not evaluable for response.
Median duration of response in brain was 10.5 weeks
(range, 6-48+ wks). Two pts with SD and 2 pts with MR
had previously received whole brain radiation therapy.
Three pts were taken off the study because of
progression of disease outside the brain including the
pt who had a CR in brain but progressed systemically.
Four pts are actively being treated in the study.
(me would equal: 2808-3120 Xeloda & 117-156 Temodar / currently on 2000 Xeloda & 250 Temodar)

Conclusions: The combination of C and T seems to be
active and well tolerated for the treatment of brain
metastases from breast carcinoma. Further studies
should include the evaluation of this combination with
radiation and as adjuvant therapy in those pts who are
at high risk of developing brain metastases.

Wednesday, December 8, 2004 4:30 PM