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#128333 01-22-2011 05:56 AM
Joined: Aug 2010
Posts: 75
Gerri Offline OP
Supporting Member (50+ posts)
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Posts: 75
CT, PET and biopsy results received. The cancer has returned, biopsy from soft pallet was positive and PET showed swelling on right side of jaw/neck is being caused by cancerous mass that is impeding blood flow. Jim's MO gave three options...surgery with just 15% chance of success, Best Supportive Care with 6 to 12 months expected, or Chemo to try and shrink. I can't make the decision for him and Jim doesn't even want to discuss yet. I've been searching this board for the many survivor stories to share with him to try and help restore hope and belief. If anyone has gone ahead with a surgery given these odds could you please share?


CG to sp age 53
4/10 BOT IVb
6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes
7/10 Cispl & Rad
1/11 recur lung mets
2/11 Clin Tr Erb Carb 5FU last 5/11
7/11 Tumor growth began wkly Bleo, Taxol, Carbo
10/28/11 Hospice; Passed 11/7/11
Gerri #128340 01-22-2011 08:44 AM
Joined: Jun 2007
Posts: 10,507
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Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Im sorry that your husband has had a recurrance. Ive gone thru it twice and know exactly what you are facing. Get him to a cancer center for a second opinion right away. If I were in your shoes, I would never give up. I do not pay attention to the odds. You either make it or you dont. Chemo alone will not cure this cancer, it is used for pallitive care. I will post a list of cancer centers, dont let location choose his fate.

http://oralcancerfoundation.org/resources/index.htm#centers


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #128344 01-22-2011 09:48 AM
Joined: Jul 2008
Posts: 507
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jul 2008
Posts: 507
Gerri,
The OCF link to NCI designated CCC's seems abbreviated, but does include some of our best.

Below is a links to ALL the NCI designated CC's & CCC's sorted by state:

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html

Here is a link to just the CCC's:
http://cancercenters.cancer.gov/documents/ccc_list.pdf

Not sure where Jim is being treated, but the University of Nebraska Medical Center in Omaha has a NCI
designated CC:
http://cancercenters.cancer.gov/cancer_centers/eppley.html

Nevertheless, consider second & third opinions.


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

Gerri #128369 01-22-2011 06:07 PM
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Geri

While Christine is correct in discounting the odds (your husband either survives or he does not - it's always 100% result for individuals), even if you look at the odds of survival, IMO surgery & chemo are the ways to go. Surgery 15% , pallative care: Zero percent, chemo - ?%
I was just reading today the old adage: you can't win, if you don't play. Jim has to stay in the game if he wants to have a chance to live.
To be blunt, it's not like Jim's quality of life is going to be ruined by surgical complications, he won't have a life very long without the surgery. There are no good solutions here, no magic wands, no miracle cures. This is reality and realistically surgery is the only option of success. Plus until the pathology report comes back after surgery, the odds are just a guess. My odds dropped big time when no clear margins could be gotten, and perineural involvement showed up after the surgery. So I did over and above the maximum radiation and chemo. But I had obligations and vows to keep, so giving up was not an option for me no matter how slim the chance.
You are so right that you can not make this decision and honestly, despite all of the above, I could understand if Jim decided enough is enough. There is hope, just not certainty.
No one should have to go through what you and Jim are suffering.
charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #128422 01-23-2011 04:18 PM
Joined: Aug 2010
Posts: 75
Gerri Offline OP
Supporting Member (50+ posts)
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Joined: Aug 2010
Posts: 75
Jim has decided on the chemo. The future is frightening but I have to remain optimistic and support his decision. I wish he would consider a second opinion but he isn't interested. He's been through so much and the old spark just isn't there anymore. I am not giving up hope that it will return.


CG to sp age 53
4/10 BOT IVb
6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes
7/10 Cispl & Rad
1/11 recur lung mets
2/11 Clin Tr Erb Carb 5FU last 5/11
7/11 Tumor growth began wkly Bleo, Taxol, Carbo
10/28/11 Hospice; Passed 11/7/11
Gerri #128424 01-23-2011 06:00 PM
Joined: Feb 2005
Posts: 118
Likes: 1
Senior Member (100+ posts)
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Posts: 118
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Gerri, have you researched clinical trials for Jim at www.nih.gov? I am a proponent and am in my third trial ~ my first in 2005 following my initial diagnosis. Each of my trials has combined chemo or chemo-type drugs. Jim's MO may already have discussed clinical trials with you and Jim, but if he or she has not you may want to research or request assistance to check out those that may be appropriate. My heart goes out to you and Jim.


Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
ZendaT #128759 01-29-2011 11:58 AM
Joined: Aug 2010
Posts: 75
Gerri Offline OP
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Aug 2010
Posts: 75
Thank you for the suggestion, we found a clinical trial and are happy to be taking some action to resume the fight.


CG to sp age 53
4/10 BOT IVb
6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes
7/10 Cispl & Rad
1/11 recur lung mets
2/11 Clin Tr Erb Carb 5FU last 5/11
7/11 Tumor growth began wkly Bleo, Taxol, Carbo
10/28/11 Hospice; Passed 11/7/11

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