| Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | OP "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Alex update final: We are now a week without the mucolytic to see if Alex felt a worsening of symptoms of thick phlegm without the help of a medicine to loosen and thin mucous. Basically, he is not sure. Conclusion is that if it did any good, it was not dramatic. Alex is absolutely sure it did not make anything worse. The problem is so complex - different people have different issues, with some being driven crazy by an overproduction of thick mucous and would give anything for it to be gone, whilst others have some thick mucous but the main problem is lack of production of anything. On top of this, type of OC, field of radiation, length of time since treatment and all sorts of other variables confound the issue. For the group who just want the thick mucous to be easier to clear, Alex's trial was probably a failure unless higher doses or a different agent would have made a difference. I can't ask him to do more than he has already done - he has humoured me and put up with my daily questions about foaming, and quantities and how often and what time blah blah blah long enough. Maybe when we have a little less going on, I can pressgang him into service once more for some other screwy idea I have but right now, he needs to enjoy feeling well and eating his way to a weight that will make our dietician happy enough to recommend removal of his PEG (still aiming at a knife and fork for Christmas since I don't know when Thanksgiving is ) Karen
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | 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 | Karen,,
Were you a Marine Drill Sargent previously? lol
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | OP "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | When I rule the world I am going to ban smoking and banish non-numbers people to an island in the middle of the ocean
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I agree with the smoking but not so sure about the non numbers people thing as I need some "balance" around me. The things I see, I see clearly and quickly. It's the things that my mind doesn't see that my non numbers person wife helps me with. Like how it's possible to spend large amounts of money while actually SAVING me money. Like why exercise resulting in any sweat IS NEVER good for you. Like why shopping in NYC is much better than any local store. Like why driving a Mercedes is best regardless of what Consumers Reports says. Like why colors other than white are preferable for many things. I could go on.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Glad there is still someone around that is trying to jump start this economy. Good for her.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | OP "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | This forum is firstly for information and support. However, a most welcome side effect is a good laugh. Thanks people Karen
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Oct 2010 Posts: 15 Member | Member Joined: Oct 2010 Posts: 15 | My brother has had no treatment of any kind and he too gets the thick mucous on a regular basis. Seems to usually be at its worst in the morning. Anyway, I tried giving him club soda. He holds it in his mouth and swishes it around. It brings out a larger (huge really) amount of phlegm shortly after he spits the club soda out. It makes him feel a lot better. I hope this gives you some relief if you decide to try it.
Twin brother Stage 4. Mouth, tongue, jaw, throat, neck and vocal chords. Not a candidate for surgery or chemo due to earlier health issues this year. He is opting for no treatment. He smoked and drank. Nutritional levels were not at their highest the last several years.
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