| | Joined: Mar 2012 Posts: 1 Member | OP  Member
Joined: Mar 2012 Posts: 1 | Hi my name is Dot. I am a SCC survivor.
CC - Squamous Cell Carcinoma of base of tongue w/ lymphnode involvment
Dx - July 2009, malignant neoplasm base of tongue with lymph node involvement
Staging - T1N2bMO (stage 4) perinual nerve involment
Tx - Partial Glossectomy 2/3 of tongue , with lymph nodes removed Aug 2009, Cisplatin x3 w/ 35 IMRT
PEG - placed Sept 2009 to current
2year out of treatment. Still experiencing side affect. Lost all taste and smell and ability to swallow. Lost 140 lbs, but now maintain my weight with tube feedings.
9 follow up scans (CAT, PET and MRI) clean
next follow up 3-20-12 PET
Glad to be alive,
Will I ever feel safe.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Dot
Welcome to OCF. So sorry you have to join us.
Will any of us ever feel "safe" when we have a Petscan or a CT or an MRI coming up? IMO, such anxiety comes with the territory, at least it does for me. But hey, within a year after TX, my BOT cancer came back. Yours has not which is a very good and reassuring sign that you are indeed as safe as you need to be right now.
I feel for you being on the tube only 6 months shorter than myself. It's hard. I just switched to a button (low profile) from the hanging tube and I love it.
If you haven't done so already: Take a look at the forum posts and do a search on "Roger Ebert" (with the parentheses ) and scroll down to the ones on G tubes and finish up with the ones on top from Brian's post and link.
I have not eaten or drunk in three years now so I know how devastating not being able to swallow can be unless you have the kind of attitude you do and you closed your post with
[quote]Glad to be alive,[/quote]
Keep the Faith
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: 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 | Dot, welcome to OCF! Always glad to have another survivor join OCF. Sorry you are still having problems with after effects. It takes a very long time to bounce back from everything you have gone thru. Some of us never go back to what we were prior to getting sick.
You arent alone with losing your ability to swallow. Charm is an excellent example of how to make the most out of life when you cant eat or drink. As he stated Roger Ebert is also unable to eat or drink, plus he cannot speak at all. Have you tried vitastim treatments? Ive heard good things about them. I also use a feeding tube. Mine is a J/G tube. I am lucky enough to be able to eat a little but not enough to sustain myself. Im sorry that you are unable to swallow or to smell. But you are right, its sure is great to be alive even with limitations.
You arent that far from me in Levittown. Im in Allentown PA. There are quite a few oral cancer survivors in this general area. We get to meet up with each other at the oral cancer awareness walks. This year the Philadelphia walk will be held on April 29th. I will be the speaker for this event. I would love for you to come out and meet lots of other survivors. It can be quite an experience meeting other oral cancer survivors in person. I cried like a baby when I first met others like myself. Let me know if you can make it.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Awesome on the survivorship... I know suffering the side effects sucks but you are alive... Ad an inspiration! Have you looked into acupuncture for the swallowing issues? welcome, and any support you could lend for the newbies would be great!l take care!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | |
| Forums23 Topics18,170 Posts196,933 Members13,105 | | Most Online458
Jan 16th, 2020 | | |
|
