| Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Aug 2010 Posts: 157 | Hello all and happy holidays!!!
I am officially back home from my moms where I have spent the last 13 days of recovery. We gathered my stuff and went straight there on my last day of treatment. I have a check up visit with radiology tuesday and at least this time they will not be torturing me. My last day as I pulled my self up off that cold, lonely table the techs looked at me and said " Mr. Nathan, we ask everyone, would you like to keep your mask?". I took a long hard stare at it and just shook my head as I couldnt speak. For the longest I wanted it but at that very moment as I looked at it something told me leave it behind, that is your past now. But anyhow, I had about 7 or 8 straight days following of terrible gagging and coughing and choking which by each day got better. I am now just on the patch itself and have recently started drinking diet sprite by mouth. The tube is still there and I am growing more and more annoyed by the daily process of the tube. I guess I just wonder when I maybe should start trying to eat again? Drinking the sprite has really soothed my sore throat from all the dry coughing and earlier the mucous that has really slowed down. I still gagg pretty bad when I try and brush my teeth so I am scared to try and eat anything yet but want the tube gone badly so I can feel somehwat normal again. 14 days tomorrow away from treatment, any enlightenment of when that end of tunnel shine may show? I hate carnations,ensure andanything with a vanilla or chocolate smell, I just want to taste a Dr. epper again damnit!
Your Friend, Nate
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Nate - It is so good to hear from you again!!! You did a very smart thing by going to your Mom's for the first couple of weeks. I'm sure it helped her, too - to have you close by so she could check on you. You are on your way, now, Nate! Everyone recovers differently but you've already seen progress with the coughing and gagging getting better. My son didn't have the tube but I'm sure someone will be along who has had more recent experience and similar to yours. Make sure and have any questions ready when you see the radiology people on Tuesday. Hope every day sees more and more positive things happening for you!
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: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Hi Nate. So glad to see you posting. Also glad to see that you spent the holidays at your moms'. John's mucus seemed to get a lot better around week 4. He didn't eat anything by mouth until roughly week 6, it was just to painful with mouth sores etc. He never took any prescription meds for pain so who knows he might have eaten by mouth sooner if he had. He continued to drink liquids all through treatment so he never had any swallowing issues. Good luck and be patient with yourself. You have been through so much and it takes time.
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Aug 2010 Posts: 157 | Well now I am 2 weeks post treatment and still have the dry cough at times which makes me gagg because there is nothing to cough up. I still feel like there is a blockage at the back of my throat right behind my tonsils, when I do drink by mouth once I get past the back it goes down my throat pretty smooth. I brushed my teeth this morning and gagged pretty bad again, I am just hoping to feel somewhat normal again soon. I just wonder how long the gagging and frog throat will be here as well as the hot flashes I get which I heard could be my thyroid acting up. I definately do not taste anything but like I said carbonated sprite sure is heaven at the moment. Just trying to take it one day at a time, if I can just eat something and get this tube out then I may feel like riding my bike so I can get some strength back. I just dont feel right moving around alot with this stupid tube bouncing around under my shirt with all its crusty boogers around the entry. Just kind of frustrated I guess...
Your Friend, Nate
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Nate, just remember everyone is different and recovers at their own pace. You are young and that should help. John finished treatments on April 15th and the PEG came out on July 5th. The doctors wanted him to regain some of the 30 lbs he lost before they pulled it.
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | 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 | The better your nutrition and hydration, the quicker you will bounce back. Wanda is correct, your age will help. You need to heal which takes time. It can take up to 2 years for you to completly recover. Take enjoyment from the small advances you make. For many weeks it will be 2 steps forward and one step back. The docs say one month of recovery for every week of radiation.
As far as the tube goes, dont you use drain sponges? That makes a huge difference with the leakage. I also use a little antibiotic ointment around where the tube comes out. It helps with granulation and the drain sponges from sticking. Many people live good lives with a feeding tube. Ive ridden my bike many times while having the tube. I do know how hard it can be, Ive where you are. Soon, you will be back on the bike and move past this whole event like it never happened. Patience! 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 2010 Posts: 157 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Aug 2010 Posts: 157 | I am glad most of the throat boogers are gone which was horrible, my mom said they looked like huge worms. But now it is the dry cough that pops up for no reason and makes me gagg so hard I almost throw up. And then I have so much saliva I either have to choose to swallow it or put the towel under my face all night when I sleep. But still wake up coughing and gagging up nothing but clear spit. Going outside too long still irritates me and makes me start to sweat and get pretty hot, especially in the neck area. Just on the short drive home yesterday from my moms to our house I got really hot, and it was 36 degrees outside. The hot flashes worry me and I wonder now if it is something that will stick around forever which would complicate my job. I am hoping to make it back to work by March which I have been away since September. I guess I have 4 more weeks before I see any light at the end of the tunnel, I really hate the tube I am sorry. It just annoys me and makes me feel not human, and I just wanna cuddle with my dogs and my lady again and it is kind of tough with a foot long tube bundled up under my shirt. Hoping for good news from radiology tomorrow and oncology wednsday and maybe they will give me a hint on when I should attempt foods. I am swallowing sprite,gatorade, and water in small portions and it feels foreign but is working. And of course I do not taste anything and am guessing I wont for a very long time.
Your Friend, NAte
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | Joined: Sep 2010 Posts: 71 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2010 Posts: 71 | Hopefully you will get some information on the hot flashes and dry cough. I had the burning throat some and the thrush medicine helped me...I am a week and 1 day out - last treatment was 12/17 - and while most of the sticky saliva is gone, nothing much else has changed. Afraid to eat...am doing a bowl of very thin chocolate pudding at the minute tho! Still have pain issues - have patch AND the hydroco. Mouth sores have pretty well healed but tongue still stings.
Glad you came through most of the tunnel...the end is way closer than the beginning now! Let us know what you find out from the Dr. and RO.
Michele in IL
Female - 53 no smoke/drink tongue Biopsy 8/2010 Surgery 9/21 for SCC left side tongue stage II. Prtl removal tongue/left side lymph nodes. All Clear Radiation started 11/2, ended 12/17 Lymph node involved left side along with gum involvement 2/9 Fibular flap failed 2/22. passed away 1/12/12
| | | | 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 | Nate,
Do get a blood test for your TSH levels. It's a tad uncommon for the thyroid to show radiation damage this soon post Tx but if I have learned anything from this cancer it's anything is possible.
Also try and get used to the fact that our recovery from this Tx can easily last well over 1 year so even though you are anxious like we all were to get back to your normal life just be patient and go with the flow. You can't rush whatever your recovery time will be.
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: Apr 2009 Posts: 329 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2009 Posts: 329 | Nate,
Glad to see you posting. Don't rush it go with the flow per DavidCPA.
Take care, keep your chin up.
Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2. Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
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