| | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Elin,
I hope you are taking advantage of these few days before your husband's treatment begins to enjoy time together and not be consummed by anxiety. Waiting can be hard so just try to take it day by day. Now would be a good time to line up help for the future. There are several good lists on the forum probably searchable under chores, help, etc. Many people want to "do something" and appreciate being allowed to help.
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Dec 2008 Posts: 18 Member | | OP Member
Joined: Dec 2008 Posts: 18 | Turns out a second opinion was GOLD. Periodontial work only, no extractions needed! We've found some light in this challenging time. Awaiting the PET scan from the 22nd. He goes back to LA for the face mask fitting.
He's going to sign on and ask about Cisplatin vs. the other chemo--pros and cons, and will introduce himself after he signs on, probably tomorrow.
Elin, artist and Wife to Ron, neck lump 8/08
Ron, age 68, Dx 11/23/08, T2N2bMx BOT Stage IV, treatments begin January. cisplatin x 3 and rads 35x, one chemo down and rads x4 as of 1/20.
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Elin,
Dental hygiene will be most critical here. A dental oncologist I saw at UCSFCCC recommended pulling all of my teeth. I got a second opinion and refused. My teeth are far from perfect, many crowns, filings, etc., but I have always stayed on top of dnetal hygiene. This will become very critical as RT and ct progress, as this treatment and the loss of saliva, is very hard on the teeth and gums.
It will require a tremendous amount of tenacity to stay on top of this while you are sick, tired and weak. This is a commitment that cannot be relaxed - even for a day. This will also be a lifetime commitment. After 5 years I finally started only having 3X/year dental cleaning.
Even is he has IMRT it will take as long as 18 months to regain salivary function. This is the time of greatest sisk. Most liquid diets are high in sugar and the saliva is not there to protect and cleanse the teeth. I read somewhere that the average person secrets between 6-8 pints of saliva every day.
I would recommend the following deantal aids if you don't already have them:
1. Biotene toothpaste for dry mouth
2. Dental trays for in home flouride treatments w/pH neutral flouride foam
3. Water Pik
4. Sonicare
6. Babys toothbrush for the first year at least.
7. Perio Aids
8. Woven dental floss
9. GUM Soft Picks.
RT and ct are hard on the gums and teeth. I have exposed roots as a result of treatment and that increases the danger.
A cautionary note: If an extraction is required, there is a 10%possibility of osteoradionecrosis (ORN) due to infection. Literally translated this means "bone radiation death". It is caused by damage to the capillaries in the jawbone from radiation. This can cause loss of the jawbone in some instances. This can sometimes be mitigated with HBO therapy.
Routine dental work such as crowns, root canals or filings should be ok.
Last edited by Gary; 12-28-2008 06:54 PM.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | 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 | Have you heard about HPV's connection to SCC? Was/is a tobacco user? Many of us have had Cisplatin with radiation but now it seems to be better to receive it in weekly doses vs the BIG 3 that I and many were subject to.
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: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Elin, I am happy for you to have found that second opinion!
It is true that some people develop serious dental problems due to the radiation.
I was lucky to have gotten competent dental opinions early (helps to know the dentist) and still have ALL my teeth. My daily life is hardly impacted by any special tooth care. I brush 2 to 3 times a day, I see a dentist every 4 months primarily for cleaning (tarter builds up more quickly with low saliva). I get fluoride treatments when they think I should. I do not do daily, weekly or monthly home fluoride treatments any longer. (I did do home brush applied fluoride for the first year or so). In the last 9 years post treatment, I have had one very small filling done.
Line yourself up with a caring dentist that knows about the effects of radiation. Arrange to see this dentist frequently and follow their advice. Plan to be careful with dental care but mostly be thankful about keeping them! I can't imagine eating with low saliva AND no teeth.....
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.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Elin,
Happy for you guys that it was periodontal treatment that was needed and not the extractions.
Stick with the second dentist and I can't add anything to Gary's dental advice. I would give him any honorary dental degree if I could.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Dec 2008 Posts: 18 Member | | OP Member
Joined: Dec 2008 Posts: 18 | Thank you all, yet again. These boards have been incredibly useful and timely. When's the pledge drive beginning?--NPR's just ended....
Elin, artist and Wife to Ron, neck lump 8/08
Ron, age 68, Dx 11/23/08, T2N2bMx BOT Stage IV, treatments begin January. cisplatin x 3 and rads 35x, one chemo down and rads x4 as of 1/20.
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