| Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Ditto what David said above, Claw. And Ken, if you're reading this I hope you've started a thread for yourself as he recommended.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Aug 2012 Posts: 71 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2012 Posts: 71 | CubanKeith, what exactly is the Nebulizer? Brand name, type, generic name ??? Thanks MickeyW
large lymph node Left Neck around May 22 2012 ENT June 6, did needle Biopsy - Negative ENT CT scan July 9 - Negative Remove lymph node July 26, DX - SSC - T1N2aM0 PET Aug 7, BOT Aug 14, endoscopy, 1cm - clear margin HPV+ TX 33 IMRT - 6 Chemo - Taxol/Carboplatin TX chemo 09/04/12 RAD 09/05/12 | | | | Joined: Aug 2012 Posts: 71 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2012 Posts: 71 | I googled nebulizer, I see it is a machine used for asthma , but is it used to combat dry mouth from radiation? Is there a special medicine to put in it.. ?
large lymph node Left Neck around May 22 2012 ENT June 6, did needle Biopsy - Negative ENT CT scan July 9 - Negative Remove lymph node July 26, DX - SSC - T1N2aM0 PET Aug 7, BOT Aug 14, endoscopy, 1cm - clear margin HPV+ TX 33 IMRT - 6 Chemo - Taxol/Carboplatin TX chemo 09/04/12 RAD 09/05/12 | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Kris uses a Salter Aire Plus nebulizer. He just puts some saline solution in it . This works well at humidifying the airways , so would moisten both the mouth and throat as well. During radiation he used a Vicks Steam Inhaler - personal electric inhaler. This is a much cheaper option and it worked well. This machine you just put water in and then breathe in the hot moist air. Hope this helps, Tammt
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Apr 2012 Posts: 32 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Apr 2012 Posts: 32 | Hi just wanted to check in after crawling thru the dark tunnel in July and August. I weathered thru not eating well and now will try to eat anything as long as I have water to keep things flowing. My fatigue is less but still present daily. Light exercise helps reduce effects of fatigue. Had been getting 2 liters H20 twice a week via port. This is reduced to 1 a week. Enables me to quench my thirst naturally, drinking lots of water daily. More is better. Still have pain in throat, taking 10mg Oxy 3x's day as needed. Reduced pain in throat allows me to eat. Need to make up some of the 40 lbs I lost since Apr 2012. Glad to be here telling you about my journey.
Last edited by KenEggman; 09-25-2012 09:34 PM.
48YO M, hlthy, xsmkr(quit 14yrs ago), mod drinkr 1 mo sore throat w/neck lump 3/12 SCC tonsil, lym nodes 4/12/12 rad tonslctmy, mets in lymph nodes 5/8 PEG, 5/10 PORT 7/3/12 Last Chemo (Cisplatin)| 7/10/12 Last RAD | 9/6/12 MRI=No New Cancer BSA Scout Ldr w/strng desire to live & beat cancer
| | | | Joined: Apr 2012 Posts: 32 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Apr 2012 Posts: 32 | P.S. About HPV, wondering why the education campaign does not communicate oral sex can lead to SCC HN HPV+. Papers found on this site by Dr. Robert Haddad outline causation of SCC HN HPV+ to oral sex. Based on my own behaviors, I would believe it was from oral sex versus smoking and drinking. I quit smoking 14 yrs ago. I used to drink some, but not heavy drinker. Makes more sense cause from oral sex (in my case) than other causations. I'm finding this is not discussed in most literature when discussing SCC HN (tonsil) HPV+. Is it mainstream do not think it's polite to discuss this cause? Wondering because I believe more education on this rapidly rising cancer should be made to the public, including strong advocacy for all to get HPV vaccination.
48YO M, hlthy, xsmkr(quit 14yrs ago), mod drinkr 1 mo sore throat w/neck lump 3/12 SCC tonsil, lym nodes 4/12/12 rad tonslctmy, mets in lymph nodes 5/8 PEG, 5/10 PORT 7/3/12 Last Chemo (Cisplatin)| 7/10/12 Last RAD | 9/6/12 MRI=No New Cancer BSA Scout Ldr w/strng desire to live & beat cancer
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Ken, Your fatigue is going to be due in part to the oxy, it depresses the central nervous system, slowing the cardio vascular system which causes physical fatigue due to lack of blood circulation and lower oxygen levels. Opiates also constrain testosterone levels making recovery harder and causing fatigue. Just as an fyi. Any weight you lost during treatment will primarily be lean muscle mass, meaning you have less skeletal muscle to support your frame, and you've certainly been exposed to highly elevated Cortisol levels due to the cancer experience. So the fact that you are only slightly fatigued is a good sign. OCF has been the leader in HPV awareness and vaccine advocacy in every way, and putting money towards research in it for a very long time. Brian Hill has been at the forefront of HPV awareness, vaccine advocacy, and education, it's a huge hill to climb so when you're feeling up to it jump on board. Those of us in the fight could use some help. Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | 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 | Ken, You don't mention but did your cancer cells test positive for HPV? Ever since I found out my cancer was caused by HPV, 6 yrs ago, I have been trying to educate the masses. Newspaper articles, TV spots, radio shows, public speaking, HPV OC seminars at Moffitt, testifying before the Florida House in favor of a mandatory (then added a no questions asked opt out feature) Gardasil vaccination for all girls entering the 9th grade and testifying before the CDC on behalf of the female Gardasil vaccination. I posted so much on this site about HPV 6 years ago that I angered many members so much so that I almost quit posting. Trust me I have tried to bring a much needed awareness to HPV cancers and the need for ALL pre sexually active young men and women to get the only vaccine the world had that will prevent cancer.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Sep 2012 Posts: 64 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2012 Posts: 64 | My docs think that I have HPV but my ENT didn't get a big enough piece to test when he did a biopsy so we don't know for sure. However, I never smoked and drank very, very little but was involved with oral sex. I have spoken with all my friends and relatives who have children and have urged them to get their kids vaccinated. My 24 year old son has done so even though he's older and it will be less effective. I would hope that all those with oral cancer, whether HPV related, or not, knowing the misery of treatment would actively promote HPV vaccinations.
Stage 3-4 Squamous BOT diagnosed 3/19/12 Molars removed 3/29/12 (Cisplatin) inpatient: 4/11/12-4/16/12; 5/2/12-5/9/12; 5/29/12-6/4/12 Feeding tube: 8/9/12-11/21/12 Radiation 8/10/12-8/29/12 Chemo 1X/week 8/10/12-8/22/12 Last PET/CT clear: 9/17/13
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | The OCF has been an advocate for the Gardasil vaccination ever since it came out. It's a no brainer. Just think we have a vaccination that will prevent cancers related to HPV. Too bad it's the parents that need to make this decision.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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