| | Joined: May 2010 Posts: 18 Member | OP  Member
Joined: May 2010 Posts: 18 | Thanks for all replies. To bring you to date, I have started walking for exercise. 20-25 minutes a day. Also going at a good clip. Started 3 weeks ago and am increasing how far I go every week. Time doesn't appear to be that much different, so I guess I'm moving faster, which is good. I have definitely noticed a difference in breathing and it has made my voice so much stronger. I will keep on truckin. Haven't weighed yet.
Sandy | | | | | 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 |  You go girl....
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 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 | Nice to see you are making such wonderful progress, Sandy! Keep up the good work!!!
Please add a signature next time you check in. When asking questions, a brief history will be helpful in getting correct relevant replies. Its important to other members for them to know where you have been. You have been thru so much, Im sure it would give others hope seeing your history. Directions are waiting for you in the private message's (PM) link I sent a while back. Look for the tiny flashing envelope next to the My Stuff tab. Thanks!!!
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: Apr 2008 Posts: 117 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Apr 2008 Posts: 117 Likes: 1 | I've been feeling yucky every since I was treated 6 years ago. I also found that antibiotics will make me feel better, but not for long. And recently I had a sinus infection, followed by a salivary gland infection and I've been on and off antibiotics. Each time they help for awhile.
My new ENT recently told me that because of radiation I can expect a lot of problems. But a different doctor explained more. He said the radiation that was shot at my tongue damaged the surrounding lymph nodes. He said this makes me prone to infections in that area. Antibiotics will suppress the infections but my lymph nodes can't keep them away. He also said that at this point they are not really tracking me for cancer return, but rather for long term effects from the treatment that don't show up right away.
I really wish someone had told me all of this sooner. It explains a lot of the problems I've been having.
Squamous cell carcinoma base of tongue. Lymph involvement unclear; staging placed at "2 or 3." Biopsy 4/18/2008. Treatment: IMRT every day for 7 weeks. Cisplaten once a week to sensitize cancer to radiation. Treatment ended 7/16/08. PET/CT shows no more cancer.
| | | | | 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 | Thanks for your post, Andrew! Im really glad you explained all this as I had not understood why I still have so many bad days. Congrats on the great check up!!!! Looks like you are now officially NED
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 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Another case for extra hydration as that is the only possibility of flushing out the mucus in the sinuses that traps all the bacteria when you breathe. Anytime the fluid gets thick and backs up in the sinuses, the lymphatic system can't carry it out and the sinuses are a particularly good environment for bacterial growth because they are warm and moist. Mucinex keeps things flowing but it can cause other issues without extra water.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | [quote]My new ENT recently told me that because of radiation I can expect a lot of problems. But a different doctor explained more. He said the radiation that was shot at my tongue damaged the surrounding lymph nodes. He said this makes me prone to infections in that area. Antibiotics will suppress the infections but my lymph nodes can't keep them away.[/quote]This is a new nugget of information. I have been very healthy thus far posttx but it sounds plausible. Not saying you are posting anything erroneous just something new to me.
Lymph nodes are nearly always referenced to those in the neck and not located BOT. For the many who have their lymph nodes dosed with rads, are those nodes now non-functional? I've not considered if they function or not and if and how much one's general immune system might be affected.
Anecdotally, there does not appear reporting of higher incidence of colds and such.
What is the scoop on node function after rads?
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Apr 2008 Posts: 117 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Apr 2008 Posts: 117 Likes: 1 | [quote=Uptown]Another case for extra hydration [/quote]
What kind of hydration? Drinking more water? Spraying nasal passage with saline solution, such as Ocean saline spray?
Squamous cell carcinoma base of tongue. Lymph involvement unclear; staging placed at "2 or 3." Biopsy 4/18/2008. Treatment: IMRT every day for 7 weeks. Cisplaten once a week to sensitize cancer to radiation. Treatment ended 7/16/08. PET/CT shows no more cancer.
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Water (and Mucinex) thin out lymphatic fluid and keep things flowing. This will prevent more sinus infections than anything. As we breathe in through our nose, it heats or cools the air and traps the bacteria. Even with burned up sections from rads, there is tremendous redundancy but that's why we all get lymphedema. The fluid can't get out as fast. Then the thicker saliva is prone to cause infections, if it gets backed up, although I seem to get around that.
I shouldn't jinx myself but I haven't had a cold since around 90 something. I used to get sinus infections almost weekly for decades, too. I found an ENT that sat me down, gave me a couple pieces of paper and explained it all. That was in March 1995. I have had maybe 3 sinus infections since 1999. Dryness is your worst enemy.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Apr 2008 Posts: 117 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Apr 2008 Posts: 117 Likes: 1 | Thanks, Uptown. Knowing the "why" helps me keep on track. So I got the Muscinex expectorant 12 hour and I'll follow the instructions.
This is the regular Muscinex. Do you use a different one?
Last edited by Andrew111; 08-23-2014 04:00 PM.
Squamous cell carcinoma base of tongue. Lymph involvement unclear; staging placed at "2 or 3." Biopsy 4/18/2008. Treatment: IMRT every day for 7 weeks. Cisplaten once a week to sensitize cancer to radiation. Treatment ended 7/16/08. PET/CT shows no more cancer.
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