| | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Lori, We were in contact while I was having surgery at the same time that your husband was. You have had a rough road since then and I am so sorry. I am having my second radiation treatments following the second surgery with the Erbitux once a week. It was decided that I had enough new tissue and the margins were close enough to warrant the radiation a second time. I have been given some scary "worse case" things that could happen, but so far I am ok, just red and raw. You are not far from the Cancer Institute at St John's Hospital in Springfield, IL. They are nationally ranked as a cancer treatment center and affiliated with SIU School of Medicine which has some very good doctors. If it were me, I would get a second opinion and try to go to a facility with a reputation as a successful cancer treatment facility. I find it upsetting that they are taking so long to get started with treatments. I am fairly aggressive about my treatments though. There are more treatment options available and who knows what they will approve for treatments next. If Ron will go for a second opinion I would ask him to. I wish you luck and will keep you and your family in my prayers.
Last edited by Good1; 11-28-2008 06:59 PM.
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Aug 2008 Posts: 96 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Quick update all:
Turns out the PET was not exactly correct (as many of you said it might not be!). The Thyroid scan came back clear, as did the colonoscopy. There are some good things! However, the RO would not agree to start radiation of any kind until and unless he was SURE there was active cancer. He sent Ron back to the surgeon for a biopsy of the nodule under the tongue. The surgeon would not do a biopsy, instead Ron had another surgery on Monday, the 8th. When we went in, we thought there was just that one area, but once the surgeon was in there, he found another area on the side of Ron's tongue. Same side as the first time. So he sent a biopsy of each spot. We got the results today only from the tongue lesion and it was positive for SCC (AGAIN)! We will probably hear about the other site tomorrow. I want to thank all of you for your replies and thoughtful comments. I am thinking more and more that we need a second opinion on course of treatment from now on. I will let you know what else happens, and I wish all of you both with the disease and the caregivers around you the very best!
Thanks again,
Lori
Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
| | | | | 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 | Lori
Im sorry to hear the results werent good. When I started reading the latest update, it seemed like everything was ok. Im so sorry it wasnt good news. Seems like you do have competent doctors caring for your husband as they did procede with the biopsies and found SCC again. A second opinion is always a good idea. Wishing you and your husband the best of luck with this latest battle.
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | I am sorry Lori and Ron. You are in my prayers. Stay strong and positive.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | Ron and Lori, My very best to you and yours through this hard time. It upsets me so when I hear of first case scenarios but when there is recurrence, I get plain mad at this stuff. Enough is enough already. The good part is, you have made it this far, you're not stopping now. Hang in there and lets trust this is the last time you have to hear those ugly words.
Keep us posted and be strong for one another. You will get there.
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
===============================
"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | [quote=lorileona]However, the RO would not agree to start radiation of any kind until and unless he was SURE there was active cancer.[/quote]
Active? Or no active? In my case the nuking was after clear margins and was intended to get anything that might be lurking in the general area, a shot-gunning if you will, not a closely targeted spot remover.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Lets hope they can develop a Tx plan that gets it all this time.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Aug 2008 Posts: 96 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | My OCF Friends, I am very low tonight. We met today with the oncologist. Both of Ron's biopsies came back positive, so this is his second recurrence within 4 months. His prognosis is not good. The Dr. said that without tx he would have 3 months. With tx, probably a year. He is starting Erbitux this week, and will stay on that indefinitely, as long as it's working. If it stops working, we move on to a clinical trial. He says that radiation would do no good at this point, since the cancer is widespread, and not localized. He has Perineural invasion, which I guess is like a scaffold effect for the cells to proliferate more quickly. Ron is, as ever, confident and ready to face it. I, on the other hand, am scared out of my mind. I know all of you have faced this with such grace, I just wish I could as well. I am not writing any of this on my blog, at least yet, because my "kids" read it, and I don't want them upset at my negative attitude. I just feel like I am going to lose my husband much too soon, and I don't know how to deal with that. Lori
Last edited by lorileona; 12-15-2008 07:52 PM.
Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Lori,
I am so sorry for latest developments. You and your husband are in my thoughts. I was the co-caregiver of my brother David and we went through all of this. You have to have faith, I always think :you never know: we did not give up until the very end. It is a very difficult time for both of you, but stay strong.
I am thinking of you
Susan
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | First things first. You do NOT have a "negative attitude". How would ANY person feel when receiving the news you did and facing what lies in your path? You are doing great - handling it as well as any human could. And I only wish I had faced my trials with "grace" I don't feel like I faced them with any grace at all - I faced them with alot of help from my friends and family. I leaned on them, talked it out, dealt with and am dealing with my mortality issues - but none of it with grace. I think you are expecting far too much of yourself.
We are here to support you - to understand the fear you feel and will do anything we can to help you.
I have often wondered how long would be long enough for me. If I lived to be 70 would I want to live to 90, etc, etc. I know whenever it is that I move on, it will be far too soon, but I feel I will leave those I love to be with those I have loved. Whenever the fear grips my gut, I try to remember how blessed I have been. I got to be 54 - lots don't. I have family and friends and many other blessings in my life. Likely when it is my time, I will have had time to say whatever I needed to, to those I love. Those who have a heart attack never get a chance to say goodbye.
A very good (but short) book I read is called "Chasing Daylight". It is the story of a CEO who is given a terminal diagnosis and how he goes about dealing with it. I found it uplighting and insightful. He never spent alot of time with self pity. Worth the read.
You and your husband are in my prayers, and sorry if I sound "preachy" - just tryng to help.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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