Brain Mets - Advice and Encouragement Needed - Page 2

Barbara2 · 04-07-2009, 08:03 PM

There is a lady who lives in my community who was diagnosed with her2+ breast cancer, stage 2 (couple of nodes), in the Spring of 2002; took part in the herceptin trial. Her body is still NED, but in 2005 she had a large brain met. Couldn't lay down without the room spinning; slept in a chair.

The tumor was removed, followed by WBR. I do not know if she was given any chemo after the WBR. She is doing well today. She's a teacher, and is still teaching.

You are in my prayers.

StephN · 04-07-2009, 09:43 PM

Dear Courtney -
Such a hard time for you these days! I, too, am just aghast at all the violence these days.

Keep your eye on the prize - to eradicate those brain mets. You may want to go back and review Brenda Hutch's posts when she was trying to decide the same questions you have. She went for the "whack-a-mole" route and then Tykerb.

Most of us who have had the initial gamma or cyber treatments have done well. My hope is that you can get your team to agree with this method. I think your age is a factor in trying to hold the WBR as a last resort.

Our thoughts will be with you.

karenann · 04-07-2009, 11:27 PM

Courtney,
I am praying for you sweet girl. I believe you and your team of doctors will come up with a good plan.

Stay strong.

Karen W.

Mary Anne in TX · 04-08-2009, 05:46 AM

Courtney, I'm just posting to cheer you on and to encourage you to keep on believing you will soon be NED!!!
Yes the world is a bit wacky, but people like you can always help to keep it in balance! Keep fighting and believing.
I'll be praying for NED to happen quickly. ma

Ceesun · 04-08-2009, 07:24 AM

I thought I read a study that tykerb and xeloda could be a preventative for brain mets..can anyone clarify this. Ceesun

pattyz · 04-08-2009, 10:41 AM

Since I have avoided WBR since 9/02, this is what I have to offer. I wish it was not so long:

Dec. 1999: Age 50, Dx'd Invasive Ductal & Inflammatory.

Jan. 2000: Mast., 6/26 pos. nodes. ER+PR-, Heu2+++ StageIIIb

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

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

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

March 2003: Progression of brain mets. 14 new lesions visable throughout brain, including a 3mm in brainstem/pons. Asymptomatic. Continue to refuse WBR. "Watch and wait " approach, treating in small batches (choosing largest, most problematic first) with two more SRS, two CyberKnife procedures through May 2004 (that's over the course of just over a year!) NED in body.

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

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

Sept. 2005: Following 2 rnds T/X, MRi shows response of nearly 50% shrinkage in many brain mets, including one 'new' in brainstem/pons area. Dizziness gone.

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

Dec. 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. Current count 6-8.

Jan. 2006: MRi shows all stable. Continue chemo combo.

May 2006: Mri reports "stable, minimal edema, no new lesions." This report details the eight remaining brain lesions, 6 clustered in cerrebellum with one on pons/brainstem, one frontal lobe. Most being 2-5mm. Just one of 8mm and one of 1.5cm. No symptoms. Continue on chemo break, no other tx's currently.

July 2007: After 9 mos. 'Stable': Progression. After a break, resume Temodar (w/the Xel) and add Tykerb for first time.

Wow. I am still doing the Temodar w/Xeloda for FOUR YEARS..and the Tykerb for almost two. Without ever doing WBR....

See onc tomorrow to see what latest report says on last wks. Mri.

You can do it, too, Courtney!!
xoxoxpattyz

karenann · 04-08-2009, 12:13 PM

Patty, I told Courtney about you and your successful treatment for brain mets. I am so glad you posted.

Karen

chrisy · 04-08-2009, 12:39 PM

Pattyz,
Of course, nobody wishes to have such a long list...on the other hand, the fact that you have a long list gives us so much hope. Thanks for posting.

Courtney, how could you not feel angry...nothing about this is in any way fair. You are doing the right thing by pushing for the best options you can. Perhaps getting into UCSF or Stanford will give you better access to cutting edge trials, as well as good options for local treatment of what you are dealing with.

Wrapping good thoughts around you....
Chris

hutchibk · 04-08-2009, 09:44 PM

Courtney - here is what we did to treat my five brain mets and five punctates after we found them 2 years ago. (the bigger ones ranged in size from 3mm to 9mm, and the punctates were pinpricks/seeds).

I chose to hold off on WBR or targeted radiation in favor of trying a different, less invasive method first. I started Tykerb/Xeloda and the docs watched me via MRI monthly. At 6 months on Ty/Xel, my brain mets shrunk, the punctates and the smallest four by 100%, and the biggest one by about 85%, and all were rendered inactive - did not shine on PET or MRI for 18 months. I stayed on Ty/Xel for 18 months with fantastic results. Last August we saw the original bigger spots start to shine on MRI again (only the biggest one increased in size by 2mm and the punctates have never shown up again and there were no new spots), so we decided that it was time to do targeted radiation. I considered all of the methods (Gamma - which required a halo to be screwed into my skull, Cyber, and IMRT.) The radiation oncologist I chose to go with uses IMRT (Intesity Modulated Radiation Therapy).

Here's some helpful differentiating info about the different brain radiation therapies:

Whole brain radiation involving treatment to all the brain tissue. This is often used for metastatic disease to provide treatment to parts of the brain where disease may be present, but does not show up on scans.

3-dimensional conformal therapy (3-D conformal) refers to a method of treatment delivery that incorporates 3-dimensional computer planning and treatment systems to produce a high-dose area of radiation that conforms to the shape of the area to be treated. This technique allows the delivery of precise doses of radiation to the tumor through multiple treatment fields while sparing surrounding tissues.

Intensity modulated radiation therapy (IMRT) which utilizes a more sophisticated system of shields within the machine allowing a higher dose of radiation to be delivered to the tumor from multiple angles, while minimizing the effects on surrounding tissue. This form of 3-D conformal radiotherapy allows a precise adjustment of radiation beams to the tissue within the target area. It is used when a high dose of radiation is necessary to treat the tumor and critical normal tissue can be spared.

Stereotactic radiosurgery (Linac based or Gamma Knife®) is a type of external beam radiation therapy using a very sophisticated treatment delivery system that delivers a high dose of radiation directly to the tumor in a very precise manner minimizing the radiation delivered to normal brain tissue. Several weaker radiation beams are aimed from different directions and come together at the tumor to deliver a high radiation dose directly to the tumor. This technique is often used when surgical removal of the tumor would damage essential brain tissue or when the individual's overall medical condition does not allow surgery. In some cases only one treatment is given.

Stereotactic fractionated radiotherapy may be an option for individuals with larger tumors who wish to avoid surgery or where the tumor is very close to critical normal tissue structures (i.e. optic nerves, optic chiasm). The technique is similar to the process described for "stereotactic radiosurgery" but each treatment is divided into smaller doses and is delivered over five to six weeks.

Treatment Side Effects

Side effects of the therapy can vary depending on your tumor and the type of treatment you receive. Possible effects include headache, skin irritation and scalp redness (similar to sunburn), fatigue, hair loss, change in appetite and unsteadiness. Some side effects may be treated with steroids (Decadron or dexamethasone) or other medications.

I had a plastic head/shoulder frame created (sort of like plastic version of a paper mache' technique) that snapped to the table and held me completely in place for treatments. I went for 5 days in a row (actually Weds, Thur and Fri separated by the weekend off and then Mon and Tue). He mapped my beams to attack each of the four spots from 19 different angles. I was on the Varian IMRT table for about 15 minutes each time. It couldn't have been easier. We also switched my treatment from Tykerb/Xeloda to Tykerb/Herceptin. So far my results have been fantastic. 7 months later scans are clear and SEs are nill.

During my IMRT, I did have some mild side effects for the first few days... but they passed after the weekend off. Day one I had a headache during the evening, but extra strength Motrin helped. Day two (and the weekend days) I felt knocked down, fatigued and flu-ey with some nausea (because one of the beams triggered the nausea center in my brain), but by Monday, all SEs were gone completely (without using steroids) and never came back. I did lose hair in the areas where the beams were aimed, which left me with a haircut that looked like I had the mange, LOL, but it started to grow back in after 2 months and by 4 months I have a cute short haircut again. No more mange. All in all, I couldn't have had a better experience.

I would recommend considering IMRT treatment. It's also quite a bit less expensive than Gamma or Cyber as the technology/machine that is used is just not as expensive to buy upfront as a Gamma or Cyber brand of machine.

hutchibk · 04-08-2009, 09:49 PM

Ceesun - I believe that the preventative aspect of Tykerb is still in trials. I believe Dr. Winer at Dana Farber is on the forefront of that research.

karenann · 04-09-2009, 08:42 AM

The people on this board are awesome! All of the sharing, advice and prayers have to help!

Sending blessings, healing prayers and love,

Karen W.

Shobha · 04-09-2009, 09:37 AM

Dear Courtney,

I am can hear your pain and frustration and it makes me cry. I am praying really hard for you. I pray that what ever option is choosen, gamma or WBR, it makes you NED in the brain and you are filled with hope again!

Sending lots of positive vibes and hugs your way!

love,
shobha

Faith in Him · 04-09-2009, 09:57 AM

Courtney,

I truly understand your pain and frustration. Cancer is not fair, period. But there is lots of reasons to have hope. Many have successfully battled brain mets. I am holding you up in prayer that you and your doctors find just the right treatment to get you back to NED.

Lani · 04-09-2009, 10:21 AM

at UCSF. It showed the end result of doing WBR first in terms of Overall Survival was no better than going straight for gamma knife. Is your doctor among those listed as authors?

Don't let the statistics frighten you. There are quite a number of ladies on this board who have defied these statistics. When/if all the cancer centers could get together and pool their results on her2+ breast cancer, I would not doubt that the numbers will be MUCH different.

This just happened to be my post on 4-7-09:

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

CourtneyL · 04-13-2009, 08:39 PM

Wow, what can I say? I am overwhelmed with the outpouring of encouragement and support. You ladies are AMAZING! You continue to inspire and fill me with hope. Thank you SO MUCH for your valuable advice; sharing your personal knowledge and experience. I am armed with so much information.

My onc and the first radiation oncologist I spoke with are pushing for WBR but I am still hopeful we can do Gamma or Cyber Knife. I've got an appointment at UCSF tomorrow and hope to get an appointment at Stanford later this week. Still don't know what I'm going to do but I do know how its going to turn out - I will get rid of these things!

I will keep you all posted. Thank you again. Know that you are all in my thoughts and prayers every day.

With love,
Courtney

Paty · 04-13-2009, 08:59 PM

Dear and sweet Courtney,

Your words have brought tears to my eyes, and you have made me feel that rage again, that rage that make us even more aggressive to beat this bad illness.
I send you my love and a big big hug. I am sure there is an answer out there for you and for all of us.

With love,

Paty

Darlene Denise · 04-14-2009, 08:20 AM

Courtney, Honey:

You are on the right track. Stay your course. Stanford is THE place to go for radiosurgery. I found all of the docs had an obligation to encourage WBR since that is Standard of Care, but, I also learned there is no right or wrong answer about this and YOUR preference DOES matter. You sound fistey, speak your preference and demand they listen. I found the more educated you are and the more realistic you are about outcome, the more likely they will listen to your wants. It sucks enough to have this friggin disease, the least we should have is the treatment options we want.

My onc tells me I want "cowboy medicine" and I say "saddle up, chemosabe." And yes, I have a pink Cowgirl hat!!

Giddie up girl, and only the best to you and your supportive family.

Love
Darlene