| | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) |  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 67 | I found this part of things the most frustrating. Treatment was over.... why wasn't starting to feel better? It takes longer than you might expect. About one month of recovery for every week of radiation until you start feeling like life is normal (albeit a new normal) again. Be patient during the next few months. Congrats on getting through the worst of it.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Congrats on finishing the treatments. I never lost my hair, but would gladly trade it , as you said , for a piece of Pizza or a nice grilled steak. Oh for the taste of real food. LOL
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | John,
Congrats! In seven weeks I'll be where you are and I'm encouraged to know it can be done! As others have said, take it easy and give yourself time to heal and recover.
All the best,
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: May 2008 Posts: 73 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: May 2008 Posts: 73 | Congrats John, As all said Patience is the name of the game now  Have rest as much as you like and keep getting in a good diet !
- Avinash
My Father,
Age 59, T2N1M0, Stage 3, smoker left 5 years back, casual drinker , NACT with TAXOL +5FU+Cisplatin x 2, and 70 Gy in 35# from 03/10/08 to 04/26/08, no surgery, After Chemo cycles tumor reduced 60%,
Cancer Free now !
| | | | | Joined: Jun 2008 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2008 Posts: 148 | Congrats John . . . getting past tx is huge! Many family members and friends ( and me too ) thought well he's done so he'll be a whole lot better right away . . . wrong! Your body's like a gas tank - now it's full of all that radiation and it will take a while to burn the stuff out of your system. I kept asking my RO for something to make me well quicker but there are no magic pills for this stage - really just time! I am now 6 months out and finally starting to feel more and more like the old me. Take care and best of luck!
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
| | | | | Joined: Mar 2008 Posts: 46 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2008 Posts: 46 | Yes I am finding that out quickly. This too is a long process but it is the road to recovery. My family keeps saying, well, you look better than last week. Or, Are you feeling better now? OH, and my favorite one of all, You were looking half dead there for a while. Good to see you are shaping up and gaining weight.
I know they mean well, but no matter how much I tell them the real deal, they seem to forget what I just told them last week.
I go out with my son who I tell you, for a 17 year old, really has been a great help to me. So we go out and since my tongue is burned badly, he talks for me when people ask me how I am. He tells them the lowdown and then when they do not ask me yes or no questions he gets upset with them. He says..Dad can not TALK, his tounge is burned.
Point is, frustration is high for all concerned. This too shall pass, but passing this point like a gentleman and can be taxing. It is important to realize that education is the key here. Educating how this cancer can affect you and all your loved ones.
So, even though I eat through a tube and my tongue hurts right now and a T-Bone steak is not in my near future, it becomes increasingly important to educate those who do not know or understand what we go through and how to handle these situations.
Hence the reason for this forum and my blog which tries to do just that. Help those understand what they do not.
Last edited by johnny47; 06-30-2008 10:12 PM.
Stage 4A SSC Left Tonsil, back of tongue and Lymph nodes on left side. Tonsil removed, Chemo and Radiation treatments completed on June 26, 2008.
| | | | | 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 | It is truly hard to educate those that have never experienced what we went through. All (me included) typically get sick for a week or two and then one day we feel better and the next day we are finished with our "recovery" and back to normal and we soon forget how bad we felt. We (us), on the other hand, recover over years and we seldom forget how bad we felt. That's something you can't expect anyone to understand, nor do we really want them to if it means they have to go through what we did.
To this day, every time my wife sees a picture of a person with cancer who is skinny with a sunken face, etc, you know what I mean, she quickly says "look...that's what you looked like for about a year'. I know I was skinny but it really hits you harder when you see someone else look that way and think others took pity on you for looking that way to.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2008 Posts: 3 Member | | Member
Joined: Jun 2008 Posts: 3 | Congratulations on reaching this milestone John! As everyone has mentioned, there's still plenty of speedbumps and potholes on your road to recovery... I wish for you a smooth and speedy path. Stick with your recovery game plan, because one day you'll be eating all that regular food you've been denied for these past weeks or months, and boy oh boy it'll sure taste good!
Diagnosed SCC Sept 07, Stage 4, BOT & 2 lymph nodes. Chemo Tx was Taxol + Carboplatin X 35, Rad Tx was Tomoscopy X 35, Oct-Dec 07. Declared cancer-free Mar 08 with no surgery needed. June 2008 PET scan reveals recurrences in skull, spine & lung. Prognosis is terminal.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Not to break the thread but Thomas I am so sorry for your turn of events. We all wish we could snap our fingers and make it not so. Any more scans planned?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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