| | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Lori,
Enjoy your family time. I have been following your thread and am pleased to see that there is an upturn in Ron's treatment. May you continue to enjoy his great sense of humor for a long time. REmember: the doctors have permission to heal, not to predict.
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Lori I hope that you remember me from September when Your husband and I had our surgeries on almost the same day. I also hope that you enjoy the holidays with your family. I pray for a brighter new year for you and Ron.
They removed 80% of my tongue in Sept and I am able to swallow. While there are things that are not possible for me to eat again, I am hopeful that I will be able to manage some foods in the future. For now I use the PEG and I am getting used to it. Once I have healed more I plan to try squash and other vegetables that I can mash, cooked apples with ice cream, and possible even some pasta depending on my swallowing abilities. I was surprised at how good pudding tasted!!!
At first I was really looking too much at what I could not do anymore and I am now focused on what I CAN do. I hope that this surgery goes well for Ron. You are a very strong person and I admire you very much. We are all pulling for you.
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: Aug 2008 Posts: 96 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Another change of plans! I did get us an appointment up at UW-Madison for another opinion. We met with a very skilled ENT Surgeon last week and decided that he was exactly what we needed. Ron is having a second salvage surgery on February 2. We have been told that this is a "last-ditch" effort, but we are focusing on the future. This Surgeon's plan sounded much better to both of us. It will be a lengthy procedure, with a two week hospital stay. The tumor is too large for the Cyberknife treatments. He will have some type of chemo again after the surgery. We appreciate all of your good thoughts and comments. 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: Apr 2007 Posts: 93 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2007 Posts: 93 | Lori,
You and Ron have been thru hell these last 7 months. I hope the salvage surgery is successful in February. Wanted to mention that I read an article in the Sacramento Bee over a year ago about a man who is in his 60's with SCC who had to have most of his tongue removed...was not able to talk or eat(by mouth) anymore. He became a gourmet chef and prepares these wonderful meals for his wife, altho he can't partake in them. It was a story about their enduring love and the changes and challenges in their life that the cancer had caused. My sister use to say she would not have more surgeries or have the radiation and chemo treatments, but when it came down to dying or going thru with the TX, she chose to live. Like your husband, the will to live is strong, he has a family who loves him and he loves, everyone adjusts to the changes that this evil cancer causes. Ron sounds like a real positive person who has the strength to deal with whatever limitations come his way.
My best to all of you,
Nancy
Caregiver to sister Connie, dx 2005, scc tongue, 4 surgeries inc. radical left side neck dissection 7/06, 35 IMRT, and 7 cisplatin 2/07, passed away 8-11-07, 51 yrs. young, fought with courage, strength and grace, found peace on her new journey.
| | | | | 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 | Lori...good news about the new plans for surgery. Having a plan and marching forward is so important when fighting this disease. I wish you both all the best as you face many difficult days ahead of you. I agree with Nancy - when it comes right down to it - you do what you have to do to live. And tell Ron that we know he can get through any thing - just keep his eyes closed!
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)
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Lori
Lots of positive thoughts and prayers being sent your way. Ron is a strong man and will come through this I am sure.
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: Mar 2006 Posts: 114 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2006 Posts: 114 | Best of luck and lots of positive thoughts sent your way for the upcoming surgery.
-Steve
Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
| | | | | 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
Sorry to hear everything your husband has been thru lately. Your plan sounds very well thought out. Will say lots of prayers for both of you.
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: Aug 2008 Posts: 96 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Hello all,
Long time no write. Ron's surgery was on Feb. 2 at UW-Madison. He was just released last Wednesday, the 18th. Nine days into the hospitalization he had to go back to surgery due to an infection and ended up losing his new metal jaw, along with quite a bit of the scapular flap tissue. His jaw will not be rebuilt. He is now doing well with a trach and PEG. Swallow study will be in a few weeks. Many good things have happened also. He still has some tongue left and all of the nodes that looked "funky" came back negative! We are hanging in there, and getting used to our new schedule. One very nice and surprising thing happened. The day of the surgery I was sitting in the surgical waiting area with my family, and a woman came up to me and said "Are you Lori?", I said yes, and it was DEJ from this website! She lives in Madison, her husband had Ron's doctor also, and she just came to say hello and give her support. That is this website in a nutshell. I hope someday I can be there for someone else. It was so kind of her to make a special trip just to let me know that she was thinking of us. Love the OCF!
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Lori,
What wonderful and thoughtful thing to happen for both you and Ron.
Sorry to hear about the jaw and the infection, but the negative nodes are definitely something to celebrate. Having some tongue will help Ron with foods. He will be able to move the around in his mouth which will make swallowing easier for him.
I hope that both of you will rest and relax now that you are home and let us know how the swallow study goes. Glad that you are back with us, I have thought of you both so often.
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
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