| Joined: Aug 2010 Posts: 75 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2010 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
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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 ChristineSCC 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 | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "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.htmlHere is a link to just the CCC's: http://cancercenters.cancer.gov/documents/ccc_list.pdfNot 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.htmlNevertheless, 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
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | 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
| | | | Joined: Aug 2010 Posts: 75 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) 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
| | | | Joined: Feb 2005 Posts: 118 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2005 Posts: 118 Likes: 1 | 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.
| | | | Joined: Aug 2010 Posts: 75 Supporting Member (50+ posts) | OP 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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