Would you do WBR a Second Time?? Advice ASAP Please

[joyce lutz]

My daughter's onc advised us today that the Temodar/Avastin treatment isn't working and wants to put her on just Tykerb w/o the Xeloda. She also mentioned her having another series of WBR for her brain mets b/c they have increased in size and I'm against it based on what I've read here. The onc said she has too many tumors for gamma knife and that gamma knife doesn't extend life! I've read differently here and online too. Please give me your two cents worth on this if you will. My best to you all.
Joyce

Just a bit of personal information, in hope that it may help your daughter:
I was diagnosed with 5 brain tumors in early 2010. The oncologist wanted me to have wbr, after intense reseach, i refused wbr and decided on cyberknife; at that point i had an unfortunate event however [the cybetrknife place treated only two of the tumors- made a mistake]. I went alsewhere and got the other two treated. I was then put on hercepting, tykerb, xeloda, faslodex and zometa. Three of the five tumors have completely gone and the other two are barely visible. However one new one surfaced since and is also getting smaller [3mm].i am on my way to cyberknife it as well.
How many tumors does your daughter have? It is my understanding that while it is stated that gamma knife can only treat up to eight tumors, i have heard that "it can be stretched" to more tumors. Wbr? I made up my mind that it would be the very last thing i would ever do if ever! Dont stop trying to find the best thing for your daughter. Patricia

[joyce lutz]

Patricia - thanks for responding. She has 7 brain mets. 3 are in cm's and the other 4 mm's. Her previous WBR shrunk them all "some", but not even 50%. Do you have mets other than the brain area? Her onc said that Xeloda is only given if a patient has active body mets. Do you know if that is correct? If I may ask, what combination of meds are you currently being given? Thanks again and my best to you
Joyce

[Gerri]

Joyce,

I know absolutely zero about brain mets but wanted to share with you this story I saw on GMA last week - it shows gamma knife successfully treating 24 tumors in the brain. The story is worth watching - it is so touching. I hope it provides you with some hope and maybe something to help with your decision.

Best of luck to your daughter. I am so sorry to hear that she is facing this once again.

http://abcnews.go.com/Health/cancer-...ry?id=12455109

[Joan M]

Joyce,

I'm sorry to hear that your daughter's brain mets are not responding to temodor/Avastin. I would try to avoid another round of WBR, if possible.

Targeted radiation like gamma knife is a good choice and even more safe than the stereotactic radiotherapy I had for my brain met, since it's regulated by the radiation authorities and not the FDA. It's not that the SRT (or SRS, stereotactic radiosurgery) is not safe, but it's very complicated to administer, and a lot of problems have been reported lately in The New York Times about people being over-radiated due to miscalculations all around. And the FDA's reporting system for problems is wanting.

As some of the other ladies have said, the gamma knife can be used to treat up to several brain mets. But for some reason, a lot of oncs always suggest WBR first when there's more than one met.

I had only one met but it was 2.6 cm and surgery followed by radiation was recommended. It was in the left frontal lobe. After recovering for six weeks, I received 5 doses of SRT to the tumor bed. That was in October and December of 2008, and I haven't had anything in the brain since. I get a brain MRI every three months.

The gamma knife machinery costs about $3 million, so if your place has one, they probably thought it was worth investing in the technology.

You could also seek another opinion.

Joan

[Debbie L.]

Joyce, have you checked out http://www.brainmetsbc.org/ ? There is a lot of information there.

It sounds like a good time for a second expert opinion at at an NCI-designated Comprehensive Cancer Center, if at all possible. http://cancercenters.cancer.gov/canc...ters-list.html

Thinking of you, sending good thoughts . . .
Debbie Laxague

[CourtneyL]

I don't think you can do WBR a second time. I've heard the side effects would just be too devastating. I remember Marie (Believe51) looked into this when her husband Ed was going through a brain mets recurrence.

Gamma Knife is the way to go. I'm sorry to be reporting that I will be going in for my 4th treatment on January 10th to zap one additional brain met. This will be a total of 19. But so far, so good. They have all been successfully treated and side effects minimal. I would highly encourage you and your daughter to look into this option. Gamma Knife can be repeated.

[joyce lutz]

Courtney - good luck with the new met. I'm sure it'll go fine. Were all the mets done one at a time? In other words did you only get one met at a time or did you have several? My best to you
Joyce

[joyce lutz]

Joan thank you for the info! My best to you
Joyce

[CourtneyL]

I've had several done at a time. As you can see from my signature, I had 10 in April 2009, 1 more in September 2009, 7 in October 2010 and will have 1 more in January 2011. 19 total tumors - 4 Gamma Knife sessions.

[joyce lutz]

WOW! Do you know if the tumor size was millimeters or centimeters? My daughter has 3 that are over 2 CM and 1 that is 1 CM and 4 that are mm's.
Joyce

[CourtneyL]

My largest was just over 2 cm. Smallest was about 3 mm. I think the upper limit for Gamma Knife is around 3 cm.

Joyce, Yes I do have have other mets. I have skin mets on my front breast and lymphedema arm. The current medication seem to be handling it quite well. About Xeloda, I asked it to be added to the Herceptin, Tykerb, Faslodex [I am 15% estrogen and progesteron positive] Zometa, because on my research I found it probably the most effective tool against brain tumors. My neurononcologist approved it for it as well. It has proven it is working for my brian tumors; as said after getting rid of my initial 5 brain tumors, I developed a new one about 4.5 mm, Xeloda was added and it has shrank to 3mm. Next week I will cyberknife it as well.
I am very happy for you, that other have responded to you about gamma knife. That is precisely my understanding, that with gamma knife you can treat more tumors than with cyberknife. I had my second cyberknife as UCSF. That medical facility is also well known for gamma knife. Look up Dr. Patricia Snead there, she is one of the best and an incredibly compassionate doctor [look up her up in the internet]. You need a second opinion for your daughter. Patricia

Joyce- I am sorry, I left out that I do also have extensive bone metastases to my spine and that I am Her2 stageIV. Have been metastatic since early 2000, have gone through just about every medication, and NEVER have been in remission.I am a very private person, looking for answers to my cancer once in a while in the different cancer sites. Your blog about your daughter just touched my heart...and I just had to give you my imput. Patricia

[Leslie304]

Hi Everyone,
I'm so frustrated after reading all this. I was dx with brain mets in November. I had sudden onset symptoms of severe headache and vomiting and had to go to the emergency room. After an MRI I was told my only option was WBR and I had to start that day because of my symptoms! I had only four mets but was told they were in four separate locations and targeted radiation was not possible. In reading everything here I see that perhaps I might have had another option. I'm currently on Tykerb/Xeloda/Herceptin. My one month MRI after WBR showed largest tumor shrunk by more than 50%. I don't know if they are expected to continue to shrink with the Tykerb/Herceptin/Xeloda. I think on my next rad onc visit I will and med/onc visit I will inquire more about targeted radiation to zap whatever is left. I was NED prior to this reoccurence for about seven months. I appreciate any advice anyone has to give.

[Lani]

I did a search of Lani and Sneed and found I posted the following in August 2009:
f you decide to do a West Coast tour to check out the possibilities, I believe Esther went to Stanford for some Cyberknife treatment (I believe of non-brain mets, if I remember correctly) Dr. Adler, a neurosurgeon at Stanford invented the Cyberknife.
A very thoughtful and down-to-earth radiation therapy MD specializing in breast ca mets to the brain and GBM (primary brain tumors), Penny Sneed at UCSF has 104 articles on PubMed. Here are 20 including some on permanent brachytherapy (implantable seeds) of radioactive iodine, so perhaps she could review your options with you.

Here are 20 of the 104:
Gamma Knife Radiosurgery for Brain Metastases from Primary Breast Cancer.
Kased N, Binder DK, McDermott MW, Nakamura JL, Huang K, Berger MS, Wara WM, Sneed PK.
Int J Radiat Oncol Biol Phys. 2009 Apr 2. [Epub ahead of print]
PMID: 19345514 [PubMed - as supplied by publisher]
Related Articles
2:
Prognostic factors and grading systems for overall survival in patients treated with radiosurgery for brain metastases: variation by primary site.
Golden DW, Lamborn KR, McDermott MW, Kunwar S, Wara WM, Nakamura JL, Sneed PK.
J Neurosurg. 2008 Dec;109 Suppl:77-86.
PMID: 19123892 [PubMed - indexed for MEDLINE]
Related Articles
3:
Effect of composite sector collimation on average dose fall-off for Gamma Knife Perfexion.
Ma L, Verhey L, Chuang C, Descovich M, Smith V, Huang K, McDermott M, Sneed P.
J Neurosurg. 2008 Dec;109 Suppl:15-20.
PMID: 19123883 [PubMed - indexed for MEDLINE]
Related Articles
4:
Phase II study of erlotinib plus temozolomide during and after radiation therapy in patients with newly diagnosed glioblastoma multiforme or gliosarcoma.
Prados MD, Chang SM, Butowski N, DeBoer R, Parvataneni R, Carliner H, Kabuubi P, Ayers-Ringler J, Rabbitt J, Page M, Fedoroff A, Sneed PK, Berger MS, McDermott MW, Parsa AT, Vandenberg S, James CD, Lamborn KR, Stokoe D, Haas-Kogan DA.
J Clin Oncol. 2009 Feb 1;27(4):579-84. Epub 2008 Dec 15.
PMID: 19075262 [PubMed - indexed for MEDLINE]
Related Articles
5:
Distinguishing recurrent intra-axial metastatic tumor from radiation necrosis following gamma knife radiosurgery using dynamic susceptibility-weighted contrast-enhanced perfusion MR imaging.
Barajas RF, Chang JS, Sneed PK, Segal MR, McDermott MW, Cha S.
AJNR Am J Neuroradiol. 2009 Feb;30(2):367-72. Epub 2008 Nov 20.
PMID: 19022867 [PubMed - indexed for MEDLINE]
Related Articles
6:
Surgical resection and permanent iodine-125 brachytherapy for brain metastases.
Huang K, Sneed PK, Kunwar S, Kragten A, Larson DA, Berger MS, Chan A, Pouliot J, McDermott MW.
J Neurooncol. 2009 Jan;91(1):83-93. Epub 2008 Aug 22.
PMID: 18719856 [PubMed - indexed for MEDLINE]
Related Articles
7:
Radiation therapy of pathologically confirmed newly diagnosed glioblastoma in adults.
Buatti J, Ryken TC, Smith MC, Sneed P, Suh JH, Mehta M, Olson JJ.
J Neurooncol. 2008 Sep;89(3):313-37. Epub 2008 Aug 20. No abstract available.
PMID: 18712283 [PubMed - indexed for MEDLINE]
Related Articles
8:
Brain metastases in breast cancer: clinical and pathologic characteristics associated with improvements in survival.
Melisko ME, Moore DH, Sneed PK, De Franco J, Rugo HS.
J Neurooncol. 2008 Jul;88(3):359-65. Epub 2008 Apr 9.
PMID: 18398574 [PubMed - indexed for MEDLINE]
Related Articles
9:
Gamma knife radiosurgery for brainstem metastases: the UCSF experience.
Kased N, Huang K, Nakamura JL, Sahgal A, Larson DA, McDermott MW, Sneed PK.
J Neurooncol. 2008 Jan;86(2):195-205. Epub 2007 Jul 13.
PMID: 17628747 [PubMed - indexed for MEDLINE]
Related Articles
10:
Management of newly diagnosed single brain metastasis using resection and permanent iodine-125 seeds without initial whole-brain radiotherapy: a two institution experience.
Dagnew E, Kanski J, McDermott MW, Sneed PK, McPherson C, Breneman JC, Warnick RE.
Neurosurg Focus. 2007 Mar 15;22(3):E3.
PMID: 17608356 [PubMed - indexed for MEDLINE]
Related Articles
11:
Phase I trial of gross total resection, permanent iodine-125 brachytherapy, and hyperfractionated radiotherapy for newly diagnosed glioblastoma multiforme.
Chen AM, Chang S, Pouliot J, Sneed PK, Prados MD, Lamborn KR, Malec MK, McDermott MW, Berger MS, Larson DA.
Int J Radiat Oncol Biol Phys. 2007 Nov 1;69(3):825-30. Epub 2007 May 23.
PMID: 17512132 [PubMed - indexed for MEDLINE]
Related Articles
12:
Treatment for posterior fossa dissemination of primary supratentorial glioma.
Smith JS, Parney IF, Lamborn KR, McDermott MW, Sneed PK, Chang SM.
J Neurosurg. 2007 Apr;106(4):567-74.
PMID: 17432705 [PubMed - indexed for MEDLINE]
Related Articles
13:
Standard treatment and experimental targeted drug therapy for recurrent glioblastoma multiforme.
Chang SM, Butowski NA, Sneed PK, Garner IV.
Neurosurg Focus. 2006 Apr 15;20(4):E4. Review.
PMID: 16709035 [PubMed - indexed for MEDLINE]
Related Articles
14:
Prognostic value of detecting recurrent glioblastoma multiforme in surgical specimens from patients after radiotherapy: should pathology evaluation alter treatment decisions?
Tihan T, Barletta J, Parney I, Lamborn K, Sneed PK, Chang S.
Hum Pathol. 2006 Mar;37(3):272-82.
PMID: 16613322 [PubMed - indexed for MEDLINE]
Related Articles
15:
Diagnosis and treatment of recurrent high-grade astrocytoma.
Butowski NA, Sneed PK, Chang SM.
J Clin Oncol. 2006 Mar 10;24(8):1273-80. Review.
PMID: 16525182 [PubMed - indexed for MEDLINE]
Related Articles
16:
Efaproxiral: should we hold our breath?
Sneed PK.
J Clin Oncol. 2006 Jan 1;24(1):13-5. Epub 2005 Nov 28. No abstract available.
PMID: 16314614 [PubMed - indexed for MEDLINE]
Related Articles
17:
Radiosurgery in metastatic brain cancer.
McDermott MW, Sneed PK.
Neurosurgery. 2005 Nov;57(5 Suppl):S45-53; discusssion S1-4. Review.
PMID: 16237288 [PubMed - indexed for MEDLINE]
Related Articles
18:
A phase II study of concurrent temozolomide and cis-retinoic acid with radiation for adult patients with newly diagnosed supratentorial glioblastoma.
Butowski N, Prados MD, Lamborn KR, Larson DA, Sneed PK, Wara WM, Malec M, Rabbitt J, Page M, Chang SM.
Int J Radiat Oncol Biol Phys. 2005 Apr 1;61(5):1454-9.
PMID: 15817350 [PubMed - indexed for MEDLINE]
Related Articles
19:
Stereotactic radiosurgery and interstitial brachytherapy for glial neoplasms.
McDermott MW, Berger MS, Kunwar S, Parsa AT, Sneed PK, Larson DA.
J Neurooncol. 2004 Aug-Sep;69(1-3):83-100. Review.
PMID: 15527082 [PubMed - indexed for MEDLINE]
Related Articles
20:
Phase II study of temozolomide and thalidomide with radiation therapy for newly diagnosed glioblastoma multiforme.
Chang SM, Lamborn KR, Malec M, Larson D, Wara W, Sneed P, Rabbitt J, Page M, Nicholas MK, Prados MD.
Int J Radiat Oncol Biol Phys. 2004 Oct 1;60(2):353-7.
PMID: 15380566 [PubMed - indexed for MEDLINE]
Related Articles

08-30-2009, 04:02 PM #12
Lani
Senior Member

Join Date: Mar 2006
Posts: 3,422
Re: Lani, propeller heads, and WBR sisters/brothers ~ looking for info and ideas
One of those 20 which might intrigue you:

Neurosurg Focus. 2007 Mar 15;22(3):E3.Links

Management of newly diagnosed single brain metastasis using resection and permanent iodine-125 seeds without initial whole-brain radiotherapy: a two institution experience.

Dagnew E, Kanski J, McDermott MW, Sneed PK, McPherson C, Breneman JC, Warnick RE.
Department of Neurosurgery, The Neuroscience Institute, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.
OBJECT: Whole-brain radiotherapy (WBRT) after resection of a single brain metastasis can cause long-term radiation toxicity. The authors evaluated the efficacy of resection and placement of 125I seeds (without concomitant WBRT) for newly diagnosed single brain metastases. METHODS: In a retrospective review from two institutions (1997-2003), 15 women and 11 men (mean age 55 years) with single brain metastasis underwent gross-total resection and placement of permanent low-activity 125I seeds. Primary systemic cancer sites varied. Patients were monitored clinically and radiographically. With neuroimaging evidence of local recurrence or new distant metastasis, further treatment was administered at the physician's discretion. By the median follow-up evaluation (12 months), the local tumor control rate was 96%. Distant metastases occurred in three patients within 3 months, suggesting synchronous metastasis, and in six patients more than 3 months after treatment, indicating metachronous metastasis. Treatment in these cases included radiosurgery in seven patients, WBRT in two, and resection together with 125I seed placement in one. Two patients who suffered radiation necrosis required operative intervention (lesion diameter > 3 cm, total activity > 40 mCi). All 26 patients who had been treated using resection and placement of 125I seeds had a stable or an improved Karnofsky Performance Scale score. At the last review, nine of 16 living patients showed no evidence of treatment failure. The median actuarial survival rate was 17.8 months (Kaplan-Meier method). CONCLUSIONS: Permanent 125I brachytherapy applied at the initial operation without WBRT provided excellent local tumor control. Local control and patient survival rates were at least as good as those reported for resection combined with WBRT. Although the authors noted a higher incidence of distant metastases compared with that reported in other studies of initial WBRT, these metastases were generally well controlled with a combination of surgery, stereotactic radiosurgery, and, less often, WBRT. Twenty-four patients (92%) never required WBRT, thus avoiding potential long-term radiation-induced neurotoxicity.
PMID: 17608356

[Lani]

I separately posted the following in 4/2009 from that same Lani, Sneed search:

IMPORTANT LESSONS--UCSF reviews 14 years of experience with gamma knife treatment of
brain mets from metastatic breast cancer

Lessons (if prove out in others studies as well)--

1)upfront whole brain radiation therapy may not improve things vs upfront gamma knife

2) having more mets may not be associated with a ahorter survival time than having few mets !!!

As with other studies, her2 +ivity associated with longer survival



Int J Radiat Oncol Biol Phys. 2009 Apr 2. [Epub ahead of print]

Gamma Knife Radiosurgery for Brain Metastases from Primary Breast Cancer.

Kased N, Binder DK, McDermott MW, Nakamura JL, Huang K, Berger MS, Wara WM, Sneed PK.
Departments of Radiation Oncology, University of California, San Francisco, School of Medicine, San Francisco, CA.
PURPOSE: The relative roles of stereotactic radiosurgery (SRS) vs. whole brain radiotherapy (WBRT) in the treatment of patients with brain metastases from breast cancer remain undefined. In this study, we reviewed our experience with these patients. MATERIALS AND METHODS: We retrospectively reviewed all patients treated between 1991 and 2005 with Gamma Knife SRS for brain metastases from breast cancer. The actuarial survival and freedom from progression endpoints were calculated using the Kaplan-Meier method. RESULTS: Between 1991 and 2005, 176 patients underwent SRS for brain metastases from breast cancer. The median survival time was 16.0 months for 95 newly diagnosed patients and 11.7 months for 81 patients with recurrent brain metastases. In the newly diagnosed patients, omission of upfront WBRT did not significantly affect the MST (p = .20), brain freedom from progression (p = .75), or freedom from new brain metastases (p = .83). Longer survival was associated with age <50 years, Karnofsky performance score >/=70, primary tumor control, estrogen receptor positivity, and Her2/neu overexpression. No association was found between the number of treated brain metastases and the survival time. CONCLUSION: We have described prognostic factors for breast cancer patients treated with SRS for newly diagnosed or recurrent brain metastases. Most patient subsets had a median survival time of >/=11 months. Unexpectedly, upfront WBRT did not appear to improve brain freedom from progression, and a larger number of brain metastases was not associated with a shorter survival time. Breast cancer might be distinct from other primary sites in terms of prognostic factors and the roles of WBRT and SRS for brain metastases.
PMID: 19345514


Hope this helps!

[Lani]

another avenue, but unsure if your daughter qualifies if she has already had WBR--also
they need some tissue brain met biopsy best) to determine if your brain mets contain Na-I symporter

here are two threads to explore with info on clinical trial requirements(link) etc:
http://her2support.org/vbulletin/sho...ghlight=Wapnir
http://her2support.org/vbulletin/sho...ghlight=Wapnir