#99515 07-15-2009 01:50 PM | Joined: Jun 2009 Posts: 64 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2009 Posts: 64 | Rex had a terrible night on Sunday night, he woke me up at 3:00 am on Monday morning and couldn't breath at all. He said it felt like everything had moved down to his voice box. We went to the local emergency room and the ent was on vacation. We then went to the University where we had treatments. They ran the tube down his nose and said their was a lot of junk around his voice box no obstructions and sent him home. We get home and about 11:30 am he came said he couldn't breathe again I called the radiation department and told me to get meat tenderizer and mix 1/2 teaspon of that with 1/4 cup of water. Has anyone else been advised to do this? Thanks Pat
Crgvr to Husband 55-yrs, surgery to remove cyst-diagnosed as SCC, 4/3/09 CT & Pet Scan showed more cancer in left lymph node and primary at the base of the tongue.TX Radiation 7 weeks 5 days a week last day is 6/25/09 Chemo completed 6/19/09 Peg Tube 5/22/09
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Meat tenderizer is actually derived from salt, You were making him a saline solution.
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 | The nurses in hospital used meat tenderizer to clear my PEG tube (the small, crappy one).
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: Jun 2009 Posts: 64 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2009 Posts: 64 | Thanks all I was just surprised. He was using a solution of salt and baking soda to rinse his throat and they said that the meat tenderizer was better. I guess I don't understand but it worked. Also he can't seem to function without the air conditioner. Is that common as well pat
Crgvr to Husband 55-yrs, surgery to remove cyst-diagnosed as SCC, 4/3/09 CT & Pet Scan showed more cancer in left lymph node and primary at the base of the tongue.TX Radiation 7 weeks 5 days a week last day is 6/25/09 Chemo completed 6/19/09 Peg Tube 5/22/09
| | | | Joined: Jun 2009 Posts: 64 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2009 Posts: 64 | Now Rex says that it's moveing down farther in his throat. This must be one hard recovery is all I can figure. I seems like we take one step forward and three steps back. Is that a true statement? Pat
Crgvr to Husband 55-yrs, surgery to remove cyst-diagnosed as SCC, 4/3/09 CT & Pet Scan showed more cancer in left lymph node and primary at the base of the tongue.TX Radiation 7 weeks 5 days a week last day is 6/25/09 Chemo completed 6/19/09 Peg Tube 5/22/09
| | | | 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 | Pat,
His recovery will be very very very slow and probably last the better part of 2 years. At first he will have more bad days mixed in with some good days and eventually the good days will outnumber the bad ones until the bad ones go away. My first year was worst than my second year. My third year post Tx has been mostly normal. My taste and saliva saw some improvement in my 4th, 5th 15th and 24th month post Tx and I am probably 90 to 95% recovered in both of those depts.
As we say, everyone can be different because of all the variables associated with us, our cancer and out Tx but generally, excluding the unfortunate ones that have a recurrence, the above is a good summary of the recovery.
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: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I have the mucous acting up worse than ever lately. You feel like you are going to suffocate at times. Especially when in a recline or part recline position, I can feel for your hubby. Buw I know it will not defeat me.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | the mucous build up is terrible and the bane of both my post radiation periods. SELTZER Water was and remains my "miracle" cure. The fizz is just enough to liquefy the mucous so I can spit it out. If your husband can gargle with seltzer, it may help him also. Like EZJim, reclining for any period of time brings on that dry heaving suffocation, so I prop up with an extra large pillow in bed (Target has full body pillows - about two regular pillows long on sale this week for $8) David's summary of recovery is "spot on". Don't even think of recurrence at this time - focus on each day. I push seltzer water because my mucous is so thick that even when I do hawk it up, it sits on top of the drain until I pour some seltzer on it. Safeway has the best deal on seltzer- in generic store brand cans . Be sure to buy only the 12 fluid oz cans and NOT the large plastic bottles as otherwise the carbonation dissipates upon opening and you will not get enough fizz to do the trick. Amazing to see the stuff that comes out but psychologically gratifying as you expel the build up. Good luck charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jun 2009 Posts: 64 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2009 Posts: 64 | Thanks for the suggestions. I will talk with him about the selzer water and see if we can get that going. I just don't understand where all this muscus somes from. I have allergies and get a lot myself but it's nothing like what he is experiencing. I am glad to know that it is normal for the chocking feeling, that really scared me when it happened. I know that it scared him as well. I don't think that he realizes that he is not going to get better in a short time. I think that he expects more out of himself than he can. He did take a couple of showers but right now he can't even do that. I am back to bathing him on the couch. That is his new bed we don't even go upstairs at night to bed. He sleeps in his chair I sleep on the floor. We were talking tonight he said he never thought that would happen to him, that I would have to take care of him. That I would be the one working, since he lost his job at christmas, it's a funny world out there. Good thing I am learning to live in today. Or at least trying. I know that I live my life in recovery that way but sometimes it's hard to apply it to other areas of my life. Pat
Crgvr to Husband 55-yrs, surgery to remove cyst-diagnosed as SCC, 4/3/09 CT & Pet Scan showed more cancer in left lymph node and primary at the base of the tongue.TX Radiation 7 weeks 5 days a week last day is 6/25/09 Chemo completed 6/19/09 Peg Tube 5/22/09
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 53 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 53 | Scatter radiation (or direct) hits the sinus cavities and creates acute (during treatment) sinusitis, and after treatments, at least in my own personal case and others that I have talked to long term chronic sinus inflammation that produces.... TONS OF THE STUFF. It will likely be part of your life for the duration. Whenall the treatment is behind you, keep an eye out for sleep apnea caused by the accumulation of mucus in your throat while sleeping. It just keeps adding one thing after another as the years go by. I try to keep perspective by reminding myself that in order to have all the crappy long term complications I do, which are many, I have to be alive.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
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