#95040 05-07-2009 03:13 PM | Joined: May 2009 Posts: 27 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: May 2009 Posts: 27 | 2 weeks ago I was diagnosed with tongue cancer and 2 lymph nodes are enlarged. I met with the Radiologist last Fri and meet with the Chemo MD tomorrow. I have had a Dentist appt and flouride treatment and received a RX for a floride paste. I start Mon. with 7 weeks of radiation, 5 days a week. I understand the chemo will be evry 3 weeks but don't have specifics. I am fortunate in that the Huntsman Cancer Institute is in Salt Lake.
I am usually very positive about things, though I have to admit that the thought of radiation and chemo scares the hell out of me. I am usually very active and worry about recovery and not being able to do all the things I do now.
I have been reading all sorts of info on what to expect and it seems very varied. My daughter came across this site and I am hoping I will learn from it and be a regular contributor.
Age 63, occasional drinker, smoked for 40 years
Base of tongue, stage 4,T-2,N2B
Cisplatin 1xweek
30 RT ended 6/25
PEG removed 8/23
PET Scan shows scaring but believed no tumors 9/25
| | | | | Joined: Aug 2008 Posts: 96 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Welcome Rick, although I am sorry you are here. Your treatment sounds exactly like my husband's first treatment. IMRT for 7 weeks along with 3 Cisplatin chemo. Just keep reading and learning all you can. This site is great for moral support and solid info.
Best of luck,
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: Aug 2008 Posts: 96 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Oh, I forgot to add: Eat all weekend! Really, eat as much as you can for as long as you can. The radiation and chemo together will do a number on your mouth and throat, and eating will become very difficult, if not impossible. Have your doctors suggested a PEG tube? My husband had one and he still lost almost 70 pounds.
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: Aug 2007 Posts: 83 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2007 Posts: 83 | Rick:
Sorry you have to be here. This cancer calls for a pretty tough treatment plan. I had just about the same same treatment plan you are getting ready to go through. Everyone reacts differantly but you can get through this and then start the recovery. A lot of us lead very active lives. Although it has been 18 months I have very few side effects (dry month, some loss of taste, some hearing loss). I am actually in better shape now then before cancer. 3 months after treatment and surgery , I went on a 3 day 108 hole golf outing. Just read through all the information here. There is wealth of information on what questions to ask, what to expect, how to handle issues, etc. Prepare for the worse expect the best. Good luck.
Bill
Bill Van Horn-53 ex-smoker, social drinker, Biopsy 8/24, Diagnosed 8/30/07 BOT T2N2-B MX Stage IV. Started treatments 10/1/07. IMRT 35 x, Cisplatin - 3 cycles - completed treatment 11/16/07. CT Scans on 1/15/08 all clear Selective neck dissection 1/28/08. All nodes clear.
| | | | | 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 | Rick welcome to OCF. Its never an esy battle going thru treatments for OC. Be careful if you are going to have cisplatin for the type of chemo. Make sure you ask what you are getting. Cisplatin has been known to cause hearing loss.
Im very surprised your doctors havent advised you to get a port and PEG tube. Both can be very very helpful in making treatments easier. Make sure you eat all you can, everything you love now. Hit up every restaurant that you like and dont worry about gaining weight. It couldbe a long time before your eating habits go back to normal.
Its ok to be scared about whats ahead. Please ask questions of your doctors, write things down and if at all possible take someone with you to appointments. Now is the time to line up all the helpers you can to drive you to treatments, pick up meds and help with your household. You can never have enough helpers, even for tiny things like taking out the dog. Dont be surprised if some helpers fade away while you are being treated. Cancer has a way of scaring people away like its contageous.
Wishing you the best of luck with your upcoming treatments.
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 2007 Posts: 83 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2007 Posts: 83 |
Rick -
Go to Getting through it Project. Last topic on Forum page. Great primer and will get you ready
Bill Van Horn-53 ex-smoker, social drinker, Biopsy 8/24, Diagnosed 8/30/07 BOT T2N2-B MX Stage IV. Started treatments 10/1/07. IMRT 35 x, Cisplatin - 3 cycles - completed treatment 11/16/07. CT Scans on 1/15/08 all clear Selective neck dissection 1/28/08. All nodes clear.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Rick, go into this with the right attitude. I did rads and chemo Erbitux, then had radiation seed implants put intomy tongue. Hell yes it worries you at times , but think positive . I can do everything I used to do and I had a partial abdominal aortic anneurysm repair this Jan and I never sit still to get backl in shape. My Dr told me todayh that the way I stay busy and don't sit still is what makes me look so young and so healthy. I work out some abnout 4 times a day too. Only thing right now is no situps because i could make the lower half of this anneurysm worse than it is. Surgfery on it again will be soon I think, but I hope they forget it. Welcome to our home and sorry youi had to come. THis is the best place on the internet and we are all friends.
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: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I forgot they had to take all of my teeth for the treatments to work right. And my cancer is gone for now. I still have to see the Drs every 2 to 3 months
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | If you decide to get a PEG tube, get it done by a gastro-Doc *before* everything starts as it will be easier on you and you will likely get a bigger PEG (less likely to clog and much easier to unclog). Having the PEG and not needing it is easier than not having it and needing it... Here's a discussion about PEG sizes: http://oralcancersupport.org/forums...g+20+FR+crappy&Search=true#Post92053
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 | Rick,
Where is your Primary?
Many now are getting Cisplatin every week during rad as opposed to 3 times like I did. From what everyone says that got it that way, it's not as bad as what I went through so assuming it's as effective I would ask your MO about that delivery method.
Have they indicated what they thought caused your cancer?
This site will prove extremely valuable so use it often.
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.
| | |
| Forums23 Topics18,170 Posts196,933 Members13,105 | | Most Online458
Jan 16th, 2020 | | |
|
