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Old 04-08-2009, 09:44 PM   #29
hutchibk
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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 KnifeĀ®) 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.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."

Last edited by hutchibk; 04-09-2009 at 10:30 AM.. Reason: add info
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