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gita Offline OP
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hi all,

following suggestions to my earlier post, i have been looking for a treatment centre in los angeles that takes a multidisciplinary approach. i've come across "city of hope" (http://www.cityofhope.org/) on the web, and wonder if anybody out there has more direct knowledge of it.

or, is there another centre in los angeles that you might recommend?

this is for my sister who's currently undergoing chemo, after surgery and radiation, because of recurrence.

thank you for any info.

be well.

gita


sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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City of Hope is a comprehensive cancer center - one of only 3 in California the other 2 are Stanford and UCSF.
http://www.nccn.org/

Loma Linda, which is in So.Cal., offers PBT which might be a consideration also.
http://www.llu.edu/proton/

My personal feeling is I wouldn't go anywhere but a comprehensive cancer center (I went to UCSF myself), I might make an exception for Loma Linda because of the uniqueness and possibilities of PBT.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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Hi,

UCLA is the top hospital and top cancer hospital in the West per the recent US News and World report. The Jonsson Cancer center is second to none and is a Comprehensive Cancer Center. Lots of clinical trials in many cancers.

http://www.cancer.mednet.ucla.edu/index.html

I had squamous cell carcinoma treated with surgery and tongue reconstruction with a radial forearm flap. This proceedure is rarely done and only in Southern Cal. at UCLA. I don't need rad. or chemo but have had a family member get both there. Let me know what kind of doc you need and I will give you a name if you wish.


T1N0M0 squamous cell carcinoma treated with hemi-glossectomy and tongue reconstruction with a radial forearm flap 3/04
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There are far more comprehensive cancer centers listed on the NCI site, which appears more up to date, than the NCCN listing that I frequently refer to. Here is a link to that list:
http://cis.nci.nih.gov/fact/1_2.htm

Not that there is anything wrong with the NCCN list but this will give you more choices.

Thank you Howard for pointing that out to me.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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gita Offline OP
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hi gary and howard,

thank you for your replies.

my sister was first at Harbor UCLA. that's where she got her surgery and radiation. the approach so far has been sadly miscalculated or callously incompetent. (this i'm sure has a lot to do with money, a topic which probably demands a separate thread.) based on the experience so far, we're convinced that she should be treated by a multidisciplinary team given how quickly the cancer is spreading and the multiple issues to consider in terms of her response to the treatments so far.

i'm not sure if there is a substantial difference between "city of hope" and "johnsson centre"? my sister has an apporintment at "city of hope" for next week. i guess the question now is whether we should also look into "johnsson"? what do you think? in terms of their approach to treatment, what factors should we take into account here?

be well.

gita


sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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I am speculating here but I would imagine that your experience should be relatively similar at both institutions. Part of the decision will be largely intuitive also - what does your heart tell you is the right path? What is your confidence level based on meeting the team?

Having a second local comprehensive cancer center is luxury that many don't have. I will admit that I didn't feel compelled to go the Stanford after meeting with people at UCSF (both local CCC's in my area).

You may wish to surf the site of both centers to see what exactly their specialties are. One of them may place more emphasis on head and neck.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Joined: May 2004
Posts: 80
gita Offline OP
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thanks for suggestions, guys.

at least from their websites, "city of hope" seems to be more patient-oriented as they have much more accessible info in terms of admission processes and treatment approaches than jonsson offers. not entirely a good reason to rule them out, but something tells me that this could be indicative of the "attitude," and we're just so sick of medical professionals who treat patients and their families like morons.

question:
in a multidisciplinary centre, do you still have a primary phisician? if so, how do you decide what this primary physician's specialization should be (i.e. a surgeon or a medical oncologist)?

be well.

gita


sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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In my case, the "primary" if you can call him this was a medical oncologist. He ordered all the labs and his nurse coordinated all other tests and appointments. I stil see the otolaryngologist (ENT) every 7 weeks after 7 3/4 months post treatment. I only schedule appts with the med oncologist as needed.

I hope this helps.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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My experience was the same as Ed's - my oncologist was the primary.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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Gita,

My oncologist became my primary care physician starting shortly after my diagnosis and continuing on for the past 15 years. I still see him a minimum of 2x a year -- sometimes more frequently if I have any symptoms he feels he needs to investigate.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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