| | 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 | Try and get him to visit this site OR as some have done in the past, print out selected posts and leave them for him to find and read when alone.
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: Oct 2010 Posts: 50 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Oct 2010 Posts: 50 | He doesn't get on the internet much but I do like your Idea of printing out notes from this forum and leaving them for him to find. Thank You
How can I find out some of the different terminology used I look up as many words but some times the abbeviations are not out there
Deb taking care of Bob, left retromolar tirgone&alveolar ridge SCC stage IV pT4anomx
11/3/10 partial mandiblctmy,trech,chest flap
11/9/10 Trech out, PEG in
1/19/11- 3/9/11 Cisplatin x3, IMRT x33
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Deb Here is a thread here on OCF, FAQ that has some common abbreviations Cancer Abbreviations - OCF forum Plus the search box on the right of the screen will pull up old posts on subjects that you want to learn more about. Sorry you had to find us, we used to say this was a club you did not want to join although when I think about it, it's the opposite as we here at OCF are part of a very elite club: cancer survivors, and that is a club that every cancer patient wants to join 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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | This is a list of abbreviations I put together some time ago from those mentioned on this forum, in case it helps:
http://web.utk.edu/~aalix/abbreviations.html
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: May 2010 Posts: 224 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2010 Posts: 224 | I know how you feel about waiting. I first found my cancer in november, and doctors kept insisting it was everything but cancer cuz i was too young for cancer. But they finally biopsied it in march and it came back as stage 3. At that point i think it was 3 weeks later and i had my surgery, and then 7 weeks after surgery i started radiation.
I am glad that your husband has you, i know i wouldn't have made it through if not for my boyfriend. You just being there for him, and helping him out as much as you can, will make a world of difference for him. Even when my boyfriend would break down and cry and just want to hold me, it still meant the world to me, cuz he was by my side. All you have to do is be there for him. I am sure he's seen you cry before, and it won't phase him if you cried now, as long as you are there with him.
I am glad they bumped the date up for bob. Hopefully this will move right along for him from there.
I know i don't have the same location of cancer, but i did have positive lymph nodes, so i know about neck dissection. If you have any questions, just ask.
Also for me, i didn't want to know before i went into surgery what it was going to be like, but i almost wish i found this site before surgery. For me surgery was a big slap in the face, day before surgery and day of, you are normal, and doing fine, other then the pain from the cancer. After surgery, it's like your world is turned upside down. I honestly wasn't expecting it to be that big of a deal. So maybe talk to him about it and ask if he wants some more info on it so he will be better prepared.
I wish you both for a quick as smooth as possible recovery!
25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
| | | | | Joined: May 2010 Posts: 135 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2010 Posts: 135 | Hi Deb and welcome to the OCF forum. Everyone here is so helpful and the shared wisdom and experience will help you to help Bob. While he may not be ready to explore what he is about to experience I'm so glad you are here learning about the illness and preparing yourself for treatments. Both the patients and caregivers here will walk with you through the next few weeks and months. Feel free to ask any question, fuss, cry, whatever.
Bless you
Dodie
Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
| | | | | Joined: Oct 2010 Posts: 50 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Oct 2010 Posts: 50 | Well now our appt. has been moved up to oct.12. I know it is just a fisrt time visit but knowing the doctor that we really need to see is in this group of doctors lets me know that we are on our way to treatment finally. Now the next question is what kind of treatment will he have. The last doctor said he would do surgery first. He said it was so close to the bone that it might need to be cut in some way and he didn't do that. He also said that was his opinion, this doctor might want to do radiation and chemo. But whatever the start of the treatment is, it is a start.
Deb taking care of Bob, left retromolar tirgone&alveolar ridge SCC stage IV pT4anomx
11/3/10 partial mandiblctmy,trech,chest flap
11/9/10 Trech out, PEG in
1/19/11- 3/9/11 Cisplatin x3, IMRT x33
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | If it is a CCC where you are going, they will have a team of Drs to make the decisions as to what they will do. Good Luck to you both.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | 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 | Deb and Bob, welcome to OCF. There are some x-military people here who may be able to give you advice about how to navigate the insurance to get the most out of it. Make sure whoever you are seeing next week is familiar with oral cancer. Dont be afraid to ask how many OC patients they see. A cancer center usually is the optimum place to go for treatment. Is Bob prepared for surgery or treatments to begin? He should be eating all he can right now. Eat all his favorites and then eat more! Bob should be enjoying everything spicy like mexican or chinese, things like steaks, ribs, and breads. Its ok to gain weight, he probably will lose some weight during his treatments. His taste and mouth functions will change weather he has surgery or radiation. It will become more difficult to eat. Many including myself have had to depend on a feeding tube to get thru this. While nobody wants one of those, it can be a necessity. Here are a few links to important info to help you begin this battle. You are very fortunate to have found OCF to guide you thru this battle. http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=65994#Post65994http://www.oralcancerfoundation.org/board_images/GTI_draft.pdfWishing you both all the best. Please post an update after the appointment.
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: Oct 2010 Posts: 50 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Oct 2010 Posts: 50 | I am very greatful to have found the OCF. Learning everything I can about this cancer is of the up most important thing I can do for Bob. I am surprised at the number of people who have oral cancer. As surprised as I am about this I am even more greatful to see the amount of survivors. Please know the words I hear from all of you help me deal with this new reality of Bob's and my life. I am having Bob drink all the ensures he can, he has been hurting for quite awhile now so I am concentrating on soft food with as many calories as possible. He has lost about 25lbs already. All this with no treatment. Even though he hasn't wanted to talk about it much, he knows he might need a feeding tube when it all begins.
I hate to ask this next question but the reality of Bob not working has come in to play. Due to the economy He lost his job for lack of work and had just begun this one 4 months ago, then cancer came into our lives. Will he be eligible for social security disability and if so when should we begin that process.
Deb taking care of Bob, left retromolar tirgone&alveolar ridge SCC stage IV pT4anomx
11/3/10 partial mandiblctmy,trech,chest flap
11/9/10 Trech out, PEG in
1/19/11- 3/9/11 Cisplatin x3, IMRT x33
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