Who's using Temodar for brain mets?

Emmay · 08-27-2006, 02:44 PM

If you are using Temodar (a.k.a. Temozolomide) for bc brain mets, how long have you been on it, is it working to control or shrink brain mets, and what are your side effects, if any?

My sister has been on Herceptin for 2 1/2 yrs, which is keeping the rest of her body clear (post-mastectomy), but she's had 2 craniotomies, WBR, and 4 rounds of CyberKnife Radiation to treat 2-4 small new mets each time. She tried the Lapatinib (Tykerb) trial last year, but it did not work for her. She is doing very well right now, but we would like to find a way to halt these insidious mets.

Thanks for your help.

karenann · 08-27-2006, 03:17 PM

I think there is a gal on this site using Temodar. I am sure she will reply as soon as she sees your post.

Karen

pattyz · 08-27-2006, 05:17 PM

Emmay,

As far as I know, I'm the only one currently (most recently atleast) using the combo of Temodar and Xeloda for my eight brain mets. Since I am on this combination, truely I don't know which has worked...

After the first two rounds (250mg Temodar x 7das plus 2000mg total Xeloda x 14 das - two weeks off) MRi showed shrinkage of nearly 50%. After the next two rounds, Mri showed identical results.

By the third & fourth rounds Mri's showed all stable no new lesions.

I went on a chemo break for four months. By the Mri at end of that Mri was read as: minimal increase in size of two of the eight mets. The balance remain stable.

Back on chemo, with a glitch. Was twice denied the Temodar so did Xeloda alone. Next Mri not until the end of Sept. and am still trying to get back the Temodar.

My counts would drop with the Temodar but come back during week of Xeloda alone. The anti-nausea meds along with the Temodar complicate my chronic constipation. It is vital to take an anti-nausea med, trust me on that.

That is all I can report as side effects.

I have been nearly asymptomatic from my brain mets. Yet, just before I began my first round of T&X, I became dizzy 24/7 with falling over events. After less than a full week on my chemos, I felt less dizzy. By the full week the dizziness was really gone. I feel very lucky to have responded so well to these two drugs. Makes my onc a happy camper too, as it was by my encouragement we tried this.

I've had five seperate focalized sessions of radiation to treat 16 other brain mets. Three SRS and two CyberKnife. No whole brain radiation, no surgeries.

I am also NED in body after responding to Navelbine/Herceptin in Nov. '02.

All I can say is: give it a try. The small study done showed a few gals that had a partial response with just one having complete response. I figure it can be any one of us in that small group, too.

sorry to go on....
hope that answered your questions,
best to you and your sister,
pattyz

Emmay · 08-27-2006, 06:55 PM

Dear PattyZ,

Thank you for "going on" with so much detail -- it's very helpful. Can you say why you were denied the Temodar after starting on it?

Though the Lapatinib (Tykerb) didn't work for my sister, I've known of other women for whom it did work. It's a simple pill taken orally, so keep it in mind as another potential line of defense. I believe the clinical trials are expanding and compassionate use availablility is beginning after early trials have shown initial positive results.

Thank you again, and may God bless you and keep you well.

Annemarie · 08-27-2006, 08:14 PM

Hi,
I am also on Temodar. I had a single lesion 3 cm and was treated with a craniotomy in 2001 followed by radiation to the brain and Temodar. I was on Temodar for 8 months and got a tiny brain met 7 mm treated with another craniotomy (should have done gamma knife). Went off Temodar. Had a 3rd brain met in 2004 5mm had gamma knife. Began Herceptin in November 2004 and Temodar again in Jan. 2006. No side effects from either drug.
Annemarie

pattyz · 08-28-2006, 06:36 AM

Emmay,

Ok then ... very glad it was of some help.

My onc and I will be talking about Tykerb. I've faxed him all the accumulated stuff I'd saved, so we'll see how it goes. I'm ER+ as well, so will have to take that into consideration, as the reports are showing the Tykerb reactivates the receptors, while losing effectiveness itself. ohhh big sentance......

I am on SSD & SSI, state Medicaid and Medicare. The Temodar was 'approved' after appeal with a co-pay of $600.00. That is the problem. Early in the yr. our gov. was fed up with the 'new' plan, so ok'd ALL meds. That is how I got it before with a $3.00 co-pay. It's about Part B and all that crap.......

Thanks for the good wishes and kind words.
pattyz

Susan2 · 08-29-2006, 08:42 AM

I was on Temodar in May with radiation. For me, the side effects were nausea and vomiting. Because I had limited side effects with prior chemo, I was just put on a mild anti-nausea medication. Once I switched to Kytril, it was fine. However, if I didn't each every 2-3 hours, I got sick. My initial MRI showed 11 lesions. 3 weeks after radiation and Temodar, some were gone, some were smaller and the remainder were stable. According to the doctor, this is considered excellent news because even the ones that are stable could be scar tissue.

I am almost back to "normal" in terms of physical activity, but I do take daily naps.

Best of everything,
Susan

hannah68 · 08-30-2006, 05:56 AM

Emmay,
I am also in the middle of 3rd cycle of temodar treatment since early july 06. Finishing one year herceptin treatment today.I had two lesions in the right temporal frontal region discovered in early june this year. A peri-lesional oedema w minimal midline shift to the left.
Did WBR 20GY for 5 consecutive days immediately after the first CT scan.

In august, my 2nd CT scan shows marked improvement of the lesions post therapy.
The 1st lesion is gone/not seen. The 2nd lesion w central necrosis is markedly small in size w marked reduction of the perilesional oedema.

Doctors are very happy and the said it was due to the WBR.

Take care.