Brain mets gals: my latest chapter...

Scans have shown growth/confirmed new mets. Brainstem/pons (again) and cerebellum (again).

Between onc and I, have started a chemo combo of Temodar/Xeloda with a best guess schedule and dosage, since we can't just look up a 'protocal' in a book.

Decided on this combo because of some small successes using each of these chemos seperately in bc brain mets.

Yesterday by accident, found a very small phase I study using this combo with some very good successes, focused on bc/brain mets. But, I've already been on our own 'protocol' for four and a half days. Faxed info to onc. We'll see if he wants to change anything with my schedule or dosing.

I have been dizzy 24/7 in varying degrees, for nine days, with headache a week longer.

Appt. with CyberKnife center next week. Was already told last time I've had so much brain rads over the past three years, it is increasingly difficult to do the planning without overradiating good brain matter. And I've had rads to pons before as well....... so, I don't hold out much hope, but still some.

Wanted to report this in case I have some success so that others may have this option, too. Well, it's already out there if other conditions are right in a case by case situation.

Also, in case it doesn't work and I have no other options left, and I am not posting anymore, it won't be too much of a surprize or mystery.

hugs around,
pattyz

SABCS ABSTRACT:
[San Antonio Breast Cancer Symposium]
[1079] Phase I study of capecitabine © 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.

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

Poster Session: Treatment: Chemotherapy -- New Drugs and Formulations (4:30 PM-7:00 PM)

I hope you don't mind my saying this, but I will keep you in my thoughts and prayers that it does work. Hang in there :-)

[Isabelle]

I don't know where you live but there is a study using Lapatimid for brain mets when radiation is not working. I know it is at Dana Farber Cancer Institute in Boston and a few other locations. These studies are talked about on this web site. See the clinical trial section. Keep it in mind if you stop the chemo. It apparently works for some women.

Good luck.
Isabelle in CT

Patty,

I'm so sorry to hear that the brain mets are back again. Has it been determined with certainty that you cannot have more radiation. Patty, I believe you have had only SRS in the past? Is that correct? If so, does this mean that you could have WBR?
I will be following you and your new combination of chemo. I pray that it works...it would be so encouraging.
You've been a great support to so many. Don't give up....there's always the trial in Boston. Would you consider it?

Celina

[StephN]

That's our girl! The fight is still strong, and it is wonderful that you have a doctor who is willing to come up with a "recipe" and work with you on it.
I have followed your case for a long time now, and look forward to you being one of those that will carry the torch for others with this therapy.

All of us are sending the best wishes for good outcome for you.

Patty,

I do NOT like your last sentence! Slap that wrist.

Yes, ask about Lapatimid. Also, when I had WBR, I was told I could have future CyberKnife treatments for as long as I needed them. That was from the creator of Cyberknife!

I'm sorry these are back again, but keep up the fight. This is just, what, Round 120? You've got at least another 100 rounds in you!!

Love and light,

Lisa

If a cat has 9 lives certainly you have many more to go. I adgree with Lisa.

Patty,
As another with brain tumours (mine inoperable in the posterior fossa region) I can imagine how you might consider not being able to, or not wanting to post anymore but let me ask you something: did you, like me, experience frustration looking for others on the various forums (should be 'fora' I think, but do we care about the grammar?) with whom to identify?

Eventually I had to go looking at primary brain tumour sites rather than BC mets sites just because there was almost noone in our boat posting with whom to identify. I would be all the poorer if you did not continue to post. You may feel that it is game over and I would not expect you to make promises but think of your 'sisters' out here who need to know that you are still climbing the rocky path. There can be a big difference between giving up and acceptance and it has to do with the quality of the attitude which goes along with it. You are needed here by others. All the subtle encouragement you may get to slowly sink out of site (sight :) is not in anyone's best interests.

I did not devastate my body with other treatments following bilateral mastectomy so I have had good quality of life between original dx of HER2 neu BC - July 2003). Seven months into Dexamethasone (4mg/day) I am in a wheelchair which makes life easier. It is only recently that the cancer has spread to the bones and obviously the longer I survive the tumour, the more opportunity there is to experience other 'outcroppings'. At that level it is all guesswork and I can do that for myself. I hope that I will be posting somewhere right up to the very last minute if it can help even one person. Eccles.

[StephN]

Eccles wrote:
"I did not devastate my body with other treatments following bilateral mastectomy so I have had good quality of life between original dx of HER2 neu BC - July 2003). Seven months into Dexamethasone (4mg/day) I am in a wheelchair which makes life easier. It is only recently that the cancer has spread to the bones and obviously the longer I survive the tumour, the more opportunity there is to experience other 'outcroppings' "

I know you have posted from time to time, but I do not have a good "fix" on your story. First of all I am curious if your first met was to your brain? And were you able to have ANY treatment for it besides an operation?
Secondly, I am wondering if you have simply decided that you do not want any intervention even if it is available and would give you a chance to live longer?
As for 7 months on Dex, that is quite debilitating even at a lower dose. I took that drug earlier this year for my brain mets before and following Gamma Knife, and have as hard a recovery as if I had been on high doses chemo (which I have in the past).

Also, can you post a link to the brain sites that you have found helpful.
Thanks a lot!

Steph, re brain tumour:

Yes, it was the first mets for me but, saying that, only a biopsy or an operation would have been able to confirm cell structure so there is a possibility that it (they) could be primaries. One major in cerebellum, one smaller in cerebrum. You ask about any treatment "besides an operation" - an operation was not considered feasible by the team. Did I decline options? - there was no option to decline but if I had been offered the possibility of surgery I believe I would have declined it because I would prefer to have the months of life rather than a possibility of being a veg. especially if the recuperation would have left me back at square one anyway. Hope that clarifies it for you. I will have to look up the URLs for the brain tumour sites but it would surprise me if, in your longer time dealing with your own situation, you have not already sourced them. Eccles

Wow, Patty!! I just read the answers you have got and as conclusion, I can tell you that you are REALLY NEEDED, so do not give up!!
I will keep on posting the way I am doing, an if posible, I will do it here too.It is just, that I am still very weak.
L and H

Leticia

Leticia! What a happy surprise to see you post! Don't overdo...but if you can post I know people would be glad to 'see' you and send you their very best wishes and support.

The last time I posted info on what was happening, there were more responses of prayers for your upcoming surgery than on this one...but know that many are indeed praying for you and sending you love.

me too........OXOXOXOXO
patty