| | Joined: Aug 2013 Posts: 54 Supporting Member (50+ posts) |  Supporting Member (50+ posts)
Joined: Aug 2013 Posts: 54 | Praying for you and the treatments. Be strong!
48 yo female, quit smoking 4yrs ago, light drinker, Stage 2 SCC, Bx3, Dx 8/22/13, surgery 9/11/13. Partial glossectomy, bilateral neck dissection levels 1-4. Tongue reconstruction with flap from forearm. 87 Lymph nodes CLEAR. Tongue margins good at 1 cm. No further treatment planned. Monthly monitoring planned for upcoming year then periodic monitoring for next 4
| | | | | Joined: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 188 Likes: 4 | Keep us posted on your progress.
Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
| | | | | Joined: Aug 2013 Posts: 23 Member | | OP Member
Joined: Aug 2013 Posts: 23 | Had Chemo and first Rad on Monday. Guts feel bloated and sore. Losing ability to taste. No real bad nausea yet.
Sort of feels like I have the flu.
Next week should be even worse from what I have read,
with white and red blood cell counts dropping due to the Cisplatin.
My wife has been very helpful since I feel that I am in a bit of a sleep-walking-state.
Hoping for a bit of relief by the weekend from the initial effects of the chemo.
Take care all,
Steve
6/5 ENT visit
6/11 FNA biopsy on lymph node
6/13 DX T2N2b stage 4 SCC on right tonsil metastasis to lymph nodes on right side
7/8 first chemo using Cetuximab
8/20 radiation oncologist initial visit
8/21 dental clearance
Cisplatin and Radiation starting Sept 9
| | | | | Joined: Aug 2013 Posts: 144 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | Oh I all but forgot about the molded mask that they pin you down with. It was not fun but I learned to relax during my 25 minute treatments. Meditation takes practice but it is well worth the time investment. Best of luck to you! shawn U.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | | 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 | Remember we all can react differently to this Tx but my experience on this site tells me that appx 10% breeze through without much of a problem; about 10% seem to start having problems from the very beginning and the rest of us don't seem to start having problems until after the 2nd Cisplatin which is after 15 rad sessions. Not sure what you have read but if you listen to us about water, nutrition, pain meds, remedies for common side effects you will be far better off than not listening to us.
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: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 188 Likes: 4 |
Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
| | | | | Joined: Aug 2013 Posts: 23 Member | | OP Member
Joined: Aug 2013 Posts: 23 | The second Ciaplatin is kicking my butt. Much worst than the first probably since I am already stressed from the 1st TX and 15 radiation Txs and poor diet (1000 cals per day). I am doing this without a PEG. Now I can hardly get 500 cals into my body. I constantly battle nausea. Between the mucus and the weird tastes I constantly gag which hurts my stomach. Keeping my mouth clean helps with the gagging reflex. I am able to get enough water into me. It helps to breathe thru my left nostril only since my right nostril puts air right on my tonsil where the dying tumor is at. Magic mouthwash (pink punch) has saved me on many occasions. Taking guaifenesin is helping with the mucus. I have lost about 12 pounds.
Smells right now are really strong and annoying. Some smells make me gag. Photophobic and cannot handle too much TV. The loud sounds and flashing lights are really bothersome.
For the good news, the tonsil tumor seems to be gone and my neck nodes are disappearing. However, the skin on my neck is cooked. Also, this damned Texas weather isn't making things much better. Dry and hot is not good for throat and neck cancers. Sorry that my report is jumbled but that's the only way I seem to be able to think right now. Well I'm off to a dark quiet room to meditate
6/5 ENT visit
6/11 FNA biopsy on lymph node
6/13 DX T2N2b stage 4 SCC on right tonsil metastasis to lymph nodes on right side
7/8 first chemo using Cetuximab
8/20 radiation oncologist initial visit
8/21 dental clearance
Cisplatin and Radiation starting Sept 9
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