#95383 05-13-2009 04:43 PM | Joined: Sep 2008 Posts: 8 Member | OP  Member
Joined: Sep 2008 Posts: 8 | I will be starting radiation soon and was wondering if everyone gets the think mucus and do I ask the doctor to put in a feeding tube? I'm very nervous and was wondering if someone could give me some answers as to what will happen? thanks, Michele
MicheleM
April 05,SCC stage 2, tumor removed under tongue and floor of tongue, full neck disection with numerous lymph nodes removed. No radiation or chemo April 09, SCC stage 2 rt side of tongue 30% rt side removed, radiation will follow
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Michelle, you will dry out around the mouth in and out and on your chin and maybe the neck. Get some Aquaphor Jell , it's in a tube ane maybe your Dr will give you some samples asnd there is Eucerin too . I used the Aquaphor a few times a day and within 2 weeks or less the dryness was gone. My skin is flaking off right now in those areas, but not very bad, It's has the appearance of dandruff. As for the feeding tube, I never had one because I didn't ant it then, but sure wish I had had one now. Good luck and it won't be as bad as you think. The mucus can be tolerated but it sure is bothersome at times.
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: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Michelle,
Are you getting chemo and radiation or just chemo? Everyone is different, but for most people the first couple of weeks are not so bad. For my husband, the hardest part in the beginning was getting used to the mask. Some people take anti anxiety meds for that.
A peg is a really great idea. You never know how much the RT will impact you. My husband did not have one and it was hard to keep him hydrated towards the end of treatment. It was also very hard for him to take his medications.
When does your radiation start? Have you been advised to "bulk" up before you start?
My husband did have that thick mucous. I vaguely remembering the medical explanation. That came towards the end of treatment as well and lasted a few weeks post treatment.
A humidifier in the bedroom helped w/ dry mouth and a portable suction machine was helpful with the thick mucous.
Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Michele
Easy answer; YES . Talk to your doctor about a feeding tube. I was one of the macho alpha males who pooh-pahed the PEG as being for sick or weak people without the true grit needed to tough it out. Ironically I am typing this hooked up to a feeding bag dripping Jevity 1.5 into my PEG. Even so, I lost over 20% of my body weight and struggled with Ensure Plus. MY Insurance covers the cost of the Jevity but I had to pay for the Ensure myself so not getting the PEG ended up costing me money too.
Radiation will cause mucous, dry mouth and difficulty swallowing. How much varies with each individual and the radiation field and dosage. EAT EAT EAT now whatever you love and don't worry about calories. finally get a complete dental exam preferably from a prothodontist who specializes in treating cancer and radiation patients as the radiation will do a number on your jaw, the roots and nerves of your teeth and mouth in general. Most of us have had flouride trays made by our dentists/prothodontists for our teeth to use during radiation treatment and for the rest of our lives
Do NOT neglect this dental issue.
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: 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 don't understand your time line?
Are these Aprils a year apart?
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 | David,
I think those April's are 4 years apart as in 2005 and 2009.
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: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | | "OCF across the pond" Gold Member (200+ posts)
Joined: Jan 2009 Posts: 225 | Hi Michele,
My Boyfriend got the thick mucous, then dryness and difficulty (impossibility) swallowing. As above the PEG is a good idea if as soon as it becomes to painful to swallow, don't wait and get the PEG, it takes the pressure and pain out of eating.
You also get very burnt skin on the outside of the neck, like the most terrible sunburn. Martin was prescribed Aqueous cream. I used to smother him in it 3 times a day and put a very light cloth provided by the hospital so that clothes didn't rub. His skin on the neck smelt quite bad, but the skin never wept or bled. i think it's because I was a bit over zealous with the moisturising cream but it worked. One day in the shower martin gently rubbed his neck and all of the smelly old skin fell off to reveal nice new skin.
KEEP MOISTURISED WATERED AND FED.
Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
| | | | | 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 | Geez and I'm a numbers person. Must be the side effects of tax season.
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 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 | Michele,
As the damage from the radiation takes it's toll, the first thing that we notice is the thick saliva resulting from damage to the thin saliva production which use to mix with the thick stuff. That usually lasts a few weeks before the thick saliva stops being produced and that's what we call Dry Mouth. DM can take years to fully recover.
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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