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Old 09-17-2008, 07:59 PM   #1
Rich66
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Cancer treatment centers of America?

A roommate mentioned them as being top notch. Aren't they controversial?

Also mentioned "heat therapies" in Germany. Thoughts?
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Mom's treatment history (link)
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Old 09-17-2008, 09:00 PM   #2
Lani
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if your mom is indeed her2 + there are a lot of treatments

available which have been shown to be effective even with metastatic disease

Look at all the ladies here who are 4,6,8 even 11 years out from Stage IV diagnosis

It makes sense to avail yourself/your mother of all the treatments which have proven to be effective before spending precious time/money on those without a proven track-record.

Where is your mother located? I believe Joe started a section on this website where people list their WONDERFUL oncologists and I am sure if you asked, many would happily recommend theirs.

Some have specialized just in her2+ breast cancer eg, Drs. Slamon and Pegram, other ran the herceptin No. American trials, eg Edith Perez, many here have oncologists they believe to have excellent judgement and a humane outlook.

I can say that at all the breast cancer meetings I attended in the last 4 or yearslast (and I attended 7 MAJOR meetings during the last year including the annual AACR, ASCO, ERA of Hope, and others) that I have never heard a speaker give a presentation about breast cancer or seen a poster exhibited by someone about breast cancer from that group of hospitals . So if they are doing something special and wonderful, they sure aren't sharing it with their colleagues/the scientific community(or am I missing something?)
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Old 09-17-2008, 09:18 PM   #3
hutchibk
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I agree Lani - now that you mention it, I haven't ever seen posters or presentations from them either. Hmmmm...
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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."
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Old 09-18-2008, 11:03 AM   #4
chrisy
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CTCA - Is controversial, they are mainly known for their emphasis on (in the words of their commercials) "treating the whole person". That is not a bad thing; they seek to be a truly integrative system combining western medicine with integrative therapies around nutrition, mind body, etc. Which can certainly be helpful.

That said, they are NOT known for cutting edge research. I think they do limited studies but not really new medical approaches. So you would, in my opinion, not go there to get the latest medical treatments. They are not a research facility or a comprehensive cancer center.

I have actually heard of the heat therapy work done in Germany, and have heard anecdotal stories that it can be effective. I actually know a person who has done this I think. It is not a considered a proven therapy - I'm not sure it is even a standard in Germany. The source of that information was a fairly "out there" alternative medicine group. So it may turn out that that will someday be THE treatment, but it is not currently a widely accepted approach.

I think your mom's Her2 status is still possibly in question; that may determine if the therapies that target her2 will be good options. But it sounds like Xeloda has been offered as an option - which would be a reasonable choice. I disagree that that is the "only"option which is what you said her doctor said.

You do need to make decisions soon, and it seems that the priority would be to first get your mom stable and get the cancer under control. While continuing to seek other answers.
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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