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Old 03-14-2006, 05:11 PM   #1
Val Pfeiffer
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Urgent--reply if you have info

I'm taking a flyer here...all of us are here to discuss Her2 breast cancer topics, but a friend of my kids' singing treacher is looking for a cancer center that would have expertise in the situation described below. She is looking for the info today or early tomorrow if possible. If any of you have a recommendation about a cancer care center in the United States that you think works with this type of case, please email me the details asap at vpfeiffer@gmail.com

thanks :-)
Val

"SMALL CELL CARCINOMA" or "SMALL CELL CANCER" which is a rare form of neuroendocrine tumor. Small cell carcinoma behaves very differently than the garden-variety neuroendocrine tumor. This type of cancer is poorly-differentiated and replicates very aggressively. Typically shows up as lung cancer though other locations are possible, but rare.

Here's additional information to give more background:
- Cancer of unknown primary (i.e. we don't know where the cancer originated)
- Condition name: Small cell cancer or small cell carcinoma
- This type of cancer typically shows up as lung cancer, rarely in other locations like liver, colon, cervix. Thus, Tony's case is rare.
- Tony's chemotherapy regiment is the same as for small cell lung cancer.
- Tony's particular chemo regiment is the following:
Day 1 (two drugs): Carboplatin (aka Paraplatin) and Etoposide (aka VP-16, aka VePesid, aka Etophophos).
Day 2 (one drug): Etoposide (aka VP-16, aka VePesid, aka Etophophos)
Day 3 (one drug): Etoposide (aka VP-16, aka VePesid, aka Etophophos)
Then, 18 days off. After that, the cycle begins with Day 1 again. There will be 6 cycles of chemo drugs administered.
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Old 03-14-2006, 06:31 PM   #2
TriciaK
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I don't know the answer---hope someone else does. I would call a lot of the best known cancer care centers, Cancer Centers of AMerica comes to mind, Sloan-Kettering, the big one in Houston. I really don't know all the right names but I have seen lots listed on this website. I hope you get some good replies. Good luck and God bless. Tricia
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Old 03-14-2006, 06:38 PM   #3
karenann
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Hi Val,

Stanford and UCSF are also good hospitals. I will pray for Tony.

Karen
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Old 03-14-2006, 07:10 PM   #4
Lani
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did a brief review (60 abstracts or so) on PubMed of small cell carcinoma

it can occur in esophagus, lung, ovary...I did this to see if there was any one scientist, group or institution who had written a lot on this or made it their "baileywick" It did not appear so. Probably because it is a collage (nice way to put it) or wastebasket diagnosis (not nice way to put it) wherein a number of different entities are lumped together because they do not yet know how to separate them, where they come from or how best to treat them.

Its name harkens back to the old days when there were entities like "small round cell tumors of childhood"--they got that name because that was all they could gleen from looking at them under the microscope. That is, all they could do was describe their appearance and lump them together, not knowing what kind of cell started them.

Nowadays, they have discovered different markers on each of them--eg, neuoroblastoma, rhabdomyosarcoma, Ewing's sarcoma, etc. so that with immunohistochemistry or other techniques they can tell what type of tumor they are and determine what the best treatment for each kind is.

Perhaps your friend's pathology slides could be sent to MD Anderson, Stanford, Memorial Sloane Kettering or Dana Farber, for a pathologic second opinion to see if anyone can find some markers on the tumor to tell what type of cell it came from.

Perhaps then they would be able to recommend the best treatment ie,it is hard to do so when you do not know WHAT you are treating.

It is possible that they will still not find any markers--but wouldn't you want more than one attempt before that possibility was given up on?

It was not that long ago that they thought breast cancer was all one entity--
it was only when they discovered the markers ER, PR, and her2neu that they discovered the different types which required different treatments

BEST ADVICE--find a state of the art cancer center and ask to have his tumor presented at tumor board, where oncologists, radiation therapists, radiologists, and pathologists all have to meet together and discuss ALL aspects of his case. I you say where he is located (and or willing to travel to) perhaps one will become obvious.

Best of luck!
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Old 03-15-2006, 05:37 AM   #5
Sheila
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Val
I would try Rush in Chicago...they have several oncologists who specialze in lung cancer only...and have done some miraculous things for people who had no hope. My prayers are with Tony.
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Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 03-15-2006, 05:50 AM   #6
tousled1
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I would try Johns Hopkins in Baltimore, MD.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 03-15-2006, 06:20 AM   #7
Val Pfeiffer
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Thank you so much, everyone :-) I have forwarded your responses.

Val
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