 
#46012 09-28-2005 11:50 AM | Joined: Jul 2005 Posts: 54 Supporting Member (50+ posts) |  Supporting Member (50+ posts)
Joined: Jul 2005 Posts: 54 | Michael,
Same symptoms here in our home. The coughing phlegm is exhausting - John gets some relief with the Hydrocodone/APAP elixir. He takes it before bed and again during the night so he has some uninterrupted sleep. MD also suggested guafensin (Sp?) to thin the secretions but he isn't interested in trying it at this point. He actually ate a few bites of an Arby's roast beef yesterday! I'm going to celebrate every little thing that returns us to "new normal".
Janet
Caregiver, Husband diagnosed 7/6/05 SCC left tonsil, T2N2bM0, Concurrent chemo/radiation begun 8/2/05 (Cisplatin). Received 2 cycles cisplatin, 38 radiation treatments. Completed course 9/27/05.
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#46013 09-28-2005 12:42 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | The Tussin really worked for us ..it thinned out the mucous considerably. In fact I am taking myself just now as I have bronchitis...green Yucky stuff being my problem ( sorry guys) and it is doing just what it is supposed to ! Sorry Michael, but you do have a way to go in dealing with the nasty stuff. But hey...you can handle it ..right?
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#46014 09-28-2005 01:07 PM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2005 Posts: 624 | Hi Michael --
How are you feeling today? Will you have your last chemo?
Barry finishes tomorrow -- the tomo is *still* down -- he got treatment on another machine, as focused down as it can be and less than 2 minutes -- just a *zap* to the base of tongue -- but not tomo so he had to take the dreaded amiphostine again. However no nausea as he took Anzemet.
As for the phlegm -- Barry had it suddenly start last Thursday, gallons of it -- thick and nasty and gagging and I thought "I guess this is the phelgm from hell they talk about but why now at 62 Gy and not earlier?" Anyway, this went on for two days, he went through tons of tissues, tried gauze, filled wastebaskets with used tissues...(sound familiar?) ... then Hopkins called and ordered him in for that staph infection, put him on vancomycin IV and gave him a suction set-up (which he used a lot at first -- they really help). They also gave him Mucinex, 2 tabs. Overnight the phelgm went away. Like that. And stayed away. He hasn't had any since. The consensus was that it was a result of his infection and that this probably started in his trachea or lungs. Once the infection was under control the phlegm pretty much was as well.
What I am saying is that it might be a good idea to be sure there is not some sort of low-grade existing infection that could be triggering this. Especially if you are having any strange fevers or chills.
Best, Gail and Barry
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#46015 09-28-2005 01:39 PM | Joined: Aug 2005 Posts: 129 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Aug 2005 Posts: 129 | Michael-
My mom just found a significant improvement in the phelm production this week. She is about 5 weeks out from her last chemo/imrt. She is finally getting a good amount of sleep now too. 4-5 hours at a time. According to her she said it was like the phlem just turned off quickly. She went from having a ton of it (box of puffs a day) to only a few clean outs a day. Her pain is also diminishing quickly. (down to 25mg of Fentanyl). Hang in there....you will get better.
Best wishes
Tami
Tami
Mom has Bot scc stage T1/N1= stage 3 dx 6/27/05 treatment IMRT & chemo (docetaxel, cisplatin, 5FU) ended treatment 8/22/05 Cancer free as of Feb 2006
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#46016 10-01-2005 03:14 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Michael and Seth, Are you home yet? Can you hear the ocean? Hope so  Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
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#46017 10-04-2005 02:01 PM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | I'm HOME!!!
Got home ok late last night!
So good to be back...It's nice and cool here 67 and sunny....indigo blue, frothy ocean...
So good to be back...
Still hacking my guts out!! I must spit gallons every day!
I weined myself off the Oxycodone, hated the way it made me feel...Been a week now since I had any...
Still have a couple Fentoyl (sp?) patches for about the last 5 days. I don't think they do much, but help me wein off the Oxy.
I'll leave em on for 4 days each, and then change them.
Any thoughts?
I'm exhausted still...and the idea of eating is gross...my taste buds are so messed up...I had to take a cherry flavored rolaids on the plane and it tasted like paint thinner.
I think that, more than anything, is why I can't eat by mouth -- but Seth is keeping me hydrated, and I take as much of the Osmolite as I can (today I had 4 cans).
Pain is light. Swollen gums are getting better.
Sore/pain on the tongue is getting better too.
Ear ringing continues to slowly improve.
I do have chills for a couple of hours every day, usually around the same time. It's like a cold sweat, with no fever. I presume it's from withdrawal of the Oxycodone.
Other than that, and the exhaustion, I'm doing ok.
No other meds, except a Zofran once in a while when I feel the urge to vomitt from all the phelgm.
Still swishing the soda/salt mix several times a day, and that seems to help a little.
My teeth feel a little "crunchy" sometimes. Like they are too tight, and cracking or something..?
Anyone else ever had this?
Thanks for listening...Just wanted to update all real quick while I could.
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#46018 10-04-2005 02:13 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Michael,
Glad you are now home with ocean sounds for recovery. Relaxation helps a ton.
Were you ever able to get a suction mcahine to help remove the phlegm? Keep rinsing with baking soda and salt. Guiafenix tablets help if you can swallow them or a robitussin if you can't. First couple weeks aafter rads are the worst. You think you should be able to eat etc. but the mucous is so bad you can't. Hang in there, it will get better. If you are trying to eat real food, pick things that have a lot of moisture or lots of sauces.
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
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#46019 10-04-2005 03:34 PM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | never got the suction machine...always got resistance, and figured I wouldn't want to haul it cross country anyway.
The phelgm is "managable" and some days better than others...
Sometimes, I can go a couple of hours without issue.
Can't talk much, so I still write my notes and stuff.
It is such torture to see my favorite foods, being hungry and not able to eat.
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#46020 10-04-2005 04:58 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Michael, Great to hear you are at home and starting to feel better!
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#46021 10-04-2005 07:50 PM | Joined: Jun 2004 Posts: 155 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2004 Posts: 155 | Micheal
Keep swishin and spittin....and sippin and workin towards your personal new normal...It won't be the same as the old normal but it is livable.This whole recovery will be unique to you but everything will get better slowly day by day...try stuff that seems non threatening mastering swallowing first.... texture was very important to Bob. He fell madly in love with maple oatmeal and grape juice for breakfast and lunch two things you couldn't pay him to eat before SCC. He found a passion for all things coffee flavored even though he mourned chocolate which didn't taste just right or just plain gross. He is now a little more than 8 months out of rads and things change or are really wierd all the time. Who thought pickles could burn you? It is hit and miss but you are here and with us and can still track sand into the house no matter how hard you try not to...so track sand,listen to the ocean and know that healing is slow but happening...Peace D
Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04
Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
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