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#45702 07-25-2005 04:29 AM
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Michael,
I lost your email on my account,
Just wanted you to know Ive been checking here for your latest news. Cell service is horrible here in Mo. Will be home tomorrow. Just want you to know you are in my thoughts and prayers.
Love, September

#45703 07-25-2005 05:47 AM
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Mine starts treatment no later than Wenesday. How am I? Cancer sucks. My neck looks like its been torched. My throat is full of glass. My doc asked if I wanted to skip a week even though he does not recommend it and I said nope go for the kill!

Little does he know I have suffered far more physical pain in my life and lived to tell the tale. Plus God is on my side giving me strength and comfort all the day through. Thank you God.

May you be blessed,
Barbara~
10 to go!


[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
#45704 07-25-2005 07:21 AM
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The EXACT date is not set, but I'll ask the RO about the Friday issue you mentioned.

My simulation is for tomorrow at 10:00 AM.

I just got back from Sloan where I met with the dentist there.

I DO have a quick question for the board (hint hint Brian are you there?)

Q: The Dr at MDAnderson said floride trays are the only to go (for life!). The Drs at Sloan said floride (Rx) toothpaste (1x brushing daily) for life is the best way..Which one is statistically best?

Also the dentists at Sloan want me to have two teeth with minor carries filled. They said I can do that this week or next with regular metal fillings. Shouldn't I use porcelin(sp?) or other non-metallic? And, does it matter if I get them only a few days to a week prior to start of radiation?

Ok, guess it was more than ONE question...Sorry :-)

The sockets hurt a little more today from the Friday extraction, but still no swelling, fever or serious pain.

WZ, did you have radiation & chemo???


Michael | 45 Male | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes Right Side | MRND & Radical Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 weeks Radiation/Chemo started August 15th at Sloan-Kettering, NY | Treatment Ended: 09-27-05 | Cancer free at 16+ YEARS | Lingering After-Effects of Tx: Thyroid function is zero, good salivary function, terrible tinnitus, some scars & neck/face asymmetry, gastric reflux. 2017 swallowing challenges & radiation damage to carotid arteries.
#45705 07-25-2005 12:00 PM
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For what its worth -- just to confirm that there is not always consistency in advice-- Barry and I were at Hopkins today meeting with dental oncologists and they use the trays and advise using the fluoride gel forever . They also advise using the trays during the radiation (without gel, I assume). This supposedly helps with scatter from fillings. Barry has a lot of crowns but they said his teeth were all sound and he didn't need any work. Thank goodness.

He will have a exam two weeks' after start of treatment to look at salivary function and any problems developing. They use a newish drug (Evoxac) to stimulate salivary function even during treatment if it appears it will help.

Tomorrow meeting with chemotherapy team and doctors again...

Gail


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!
#45706 07-25-2005 12:31 PM
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John had 1st 3 days of rad. and then 4 days off because of Memorial weekend. Go figure. 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

:
#45707 07-25-2005 12:57 PM
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Hi Michael,
I've been away for a few days. Glad your extraction went well and you have decided on a treatment center. I too was very glad to get treatment started. Wanted this thing killed as soon as possible.

I had XRT not IMRT and they pulled every tooth that had a filling in it, so I lost all my rear teeth, but that was back in the dark ages. My current dentist/prosthodontist, who specializes in cancer patients, uses no metal in my mouth. I'm not certain what the substance is that he uses to fill the teeth, but it is not metal.

Fluoride trays are not that expensive $400 or so. The fluoride is cheap. Is there some reason that they don't want you to use both the toothpaste and the fluoride trays. You don't sleep with the trays. You put them in your mouth for 15 minutes and then don't drink anything for 1 hour. I use them in the morning while I shower. I think the toothpaste has a higher level of fluoride that my Gelcam so that may be one reason they prefer the toothpaste. Also the Gelcam stains my teeth something awful. Much worst than when I was a 3 pack a day smoker.

Are they going to put you on anything to protect your saliva? If this hasn't been discussed ask them.

If you are meeting the VP from Imclone in NJ headquarters this week, I work about 20 minutes away. Send up a smoke signal or email.

I hope everything goes well for you. Eat up at all those good restaurants on the East side as long as you can. Hope you found a good place to stay.

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
#45708 07-25-2005 01:22 PM
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WZ Offline
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Michael,

I had 9-hour surgery (tonsilectomy + RND), 33-radiations and 7 concurrent chemo (weekly cisplatin). 10 days before the radiation, I had 4 teeth pulled. During the radiation, I had a real bad infection, I was hospitalized to release the abesess (sp ?). The infection forced me to stop treatment for 9 days. My throat won't heal for three months, then Dr. ordered Hyperbaric Oxygen treatment.....

Many infections/inflammations I could not remember due to my allergic reaction to the plate in my jaw. After Dr. removed the plate 12 months later, everything took a good turn.....

I was 38 when diagonsed, now it has been three years.

You are in my preyers


WZ


WZ | Stage 4, Tonsillar Cancer Aug, 2002
#45709 07-25-2005 03:06 PM
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Hi all,

Besides the "Gel-Kam", another good thing for the trays is "GC Tooth Mousse, a topical cream with bio-available calcium and phosphate", available through the dentist. Good for extra toughening. This is an Australian invention I believe, and made in Japan. Here it costs around AU$20 (with our dollar nick-named "the Pacific Peso", it should be cheaper up there!)

I also leave the trays when showering - saves time, whatwith all the other things you have to do wink

Cheers!

Tizz


End of Radiation - the "Ides of March" 2004 :-)
#45710 07-25-2005 05:17 PM
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My trays costs 200 dollars in California where everything is more expensive. The flouride I use is prescription and pH neutral. It is Bultler .9% Neutral Flouride Topical Foam - MUCH better than the OTC stuff. Oral B also makes one (both of these are a 5 minute treatment). Your dentist should be able to set you up with it. I also have 4 flouride treatments a year with more potent flouride 1.8%). I have lots of crowns and fillings and haven't had much in the way of problems. I had IMRT and only lost one parotid gland so most of my salivary function has returned, although it took about 18 months. I didn't take Amofostine and the RO said I probably would not need it anyway. Metal fillings shouldn't make much difference.

The stuff Tizz mentioned probably isn't available here because it would be prescriptive here and would have to be approved by the FDA. Check with your dentist.

Some people have talked about "side scatter" from the gold in crowns. I put cotton rolls between my teeth/cheeks and teeth/tongue and I think helped it a little. They have mouth guards also.

Some people react worse than others - what will be will be.

Are you getting chemo too? If so be sure to get the chemo after radiation - not before. If you are getting Cisplatin, your firat infusion should coincide with the first radiation treatment.

You need to ask what the total dose will be. 72 cGy is the minimum amount and 81 cGy is the maximum (AKA "Boost")


Gary Allsebrook
***********************************
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)
#45711 07-25-2005 10:19 PM
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Hi Michael,

I use both the prescription fluoride toothpaste and fluoride gel in my trays. Although I have some fillings I didn't have to have any dental work done prior to treatments and didn't experience any problems with these fillings during radiation (XRT). My trays cost 250 dollars so, Gary, I guess California and New Jersey must be charging about the same! smile

Hugs, Nancy


Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
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