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#148262 - 04/14/12 12:42 PM Newbie
KenEggman Offline
Contributing Member (25+ posts)

Registered: 04/14/12
Posts: 32
Loc: VA, USA
Hi I'm Ken, a 48 yr old, scared, recently diagnosed with SCCA of the tonsil. Four days post-surgery, waiting on PET results and treatment options. Do not have the staging yet.

As I learn where SCCA of tonsil comes from, I attribute my 20 year of smoking (which I stopped 14 years ago), and alcohol consumption to cause. Maybe the cause is HPV, I have not found out yet.

I want to learn how I can fight cancer, what I can do to stop continuous growth, and try to reverse and effects.

I want to hear from those with similar circumstances to understand what they are doing to fight cancer.

I have a lovely wife and handsome son who I want to live for.

Ken
_________________________
48YO M, hlthy, xsmkr(quit 14yrs ago), mod drinkr
1 mo sore throat w/neck lump 3/12
SCC tonsil, lym nodes
4/12/12 rad tonslctmy, mets in lymph nodes
5/8 PEG, 5/10 PORT 7/3/12 Last Chemo (Cisplatin)| 7/10/12 Last RAD | 9/6/12 MRI=No New Cancer
BSA Scout Ldr w/strng desire to live & beat cancer

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#148264 - 04/14/12 01:24 PM Re: Newbie [Re: KenEggman]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Hi there and welcome. - sorry you have to join our group! Try not to freak out too badly. I'm assuming they know it's cancer via biopsy of the tonsil they removed?the PET will tell them if there are lymph nodes involved. If there aren't then that's a good thing. lowers the staging and means you caught it fairly early. But if there are the number can make a difference... Regardless it is what it is - knowing exactly will put you n a better position to fight it.

From what you say it sounds to me that it's HPV related. Most tonsil cancer is. This is a good thing - as HPV related cancer responds well to chemo and radiation. I'm sure smoking and drinking could have an impact but you quit the smoking a long time ago... Regardless those two things would and can irritate the situation now, even if it's HPV related - so try to stay away from the drinking.

There are others here who've been through this and they are well versed in tonsil / HPV related cancers. They'll definitely be along. Post surgery. The next step is likely radiation and chemo, NOT fun, but doable...

So want to give yourself the best chance? Get yourself to a CCC where they deal with this all the time, (they have a protocol in place for these kind of cancers and a team that works together, plus they have a tumor board that is there in case anything unusual pops up. And they have clinical trials) Secondly nutrition, eat healthfully - lots of fresh fruits, veggies, lots of protein... And not necessarily from animal flesh, or dairy. (I'm a veg head... Have a super power protein shake every morning and I'm one year post treatment... Protein helps you heal - nutrition gives your body the best shot at fighting and healing... ) Plus if your going to go for rads and chemo, you need to bulk up starting now. I know people will say eat all your favorite foods - etc.. And do but verything in moderation.. Eat a lot of calories 2500-3000 or more - but try to make it healthy calories too. And educate yourself on this disease... Knowledge is power. Know what treatment to expect - so you can ask your dr. informed questions.

A couple of things - if they tell you they got it all and you're fine - keep a very close eye on your neck and mouth what sometimes happens is they'll remove the original tumor and then send you home but a few stray cells that may be hiding in your nodes could eventually pick up steam and grow - swollen lymph nodes is good indicator. If this happens then high tail it back ASAP (nodes respond to inflammation etc... But I believe in the better safe than sorry adage.) Secondly
Try not to despair... We're here to help, and everyone here has their own story... You may share some similarities with all of us, but never be exactly like someone else. Some stuff here is scary - but it can prepare you, and just because someone with the same cancer is having a super hard time doesn't mean you will. Hugs and good luck!
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#148273 - 04/14/12 07:01 PM Re: Newbie [Re: Cheryld]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9062
Loc: PA
Welcome to OCF! Im impressed by you adding a signature already, thanks! It helps us to get to know you and your situation and makes it easier to answer questions.

OCF is a great place to come for info and support. There is tons of important info on the main pages besides here on the forum.

Was the PET done prior to your surgery?

Wishing you all the best with your recovery.


Edited by ChristineB (04/14/12 10:25 PM)
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148291 - 04/15/12 01:29 AM Re: Newbie [Re: ChristineB]
David2 Offline
Patient Advocate (1000+ posts)

Registered: 07/12/09
Posts: 1333
Loc: Los Angeles
Ken, adding my welcome and sorry you're here.... but it's a wonderful place with the best people in the world. Please keep us informed as you learn more. The HPV plus or minus status (and I'd agree with Cheryl that it sounds likely) will be an important piece of information, for the reasons she cited.

Getting the best medical advice possible and keeping a positive attitude are the best things you can do at this point. And we're all here to back you up.

Courage!
_________________________
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 6 years all clear in 6/15

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#148325 - 04/15/12 07:05 PM Re: Newbie [Re: Cheryld]
KenEggman Offline
Contributing Member (25+ posts)

Registered: 04/14/12
Posts: 32
Loc: VA, USA
Originally Posted By: Cheryld
Hi there and welcome. - sorry you have to join our group! Try not to freak out too badly. I'm assuming they know it's cancer via biopsy of the tonsil they removed?the PET will tell them if there are lymph nodes involved. If there aren't then that's a good thing. lowers the staging and means you caught it fairly early. But if there are the number can make a difference... Regardless it is what it is - knowing exactly will put you n a better position to fight it.

From what you say it sounds to me that it's HPV related. Most tonsil cancer is. This is a good thing - as HPV related cancer responds well to chemo and radiation. I'm sure smoking and drinking could have an impact but you quit the smoking a long time ago... Regardless those two things would and can irritate the situation now, even if it's HPV related - so try to stay away from the drinking.

There are others here who've been through this and they are well versed in tonsil / HPV related cancers. They'll definitely be along. Post surgery. The next step is likely radiation and chemo, NOT fun, but doable...

So want to give yourself the best chance? Get yourself to a CCC where they deal with this all the time, (they have a protocol in place for these kind of cancers and a team that works together, plus they have a tumor board that is there in case anything unusual pops up. And they have clinical trials) Secondly nutrition, eat healthfully - lots of fresh fruits, veggies, lots of protein... And not necessarily from animal flesh, or dairy. (I'm a veg head... Have a super power protein shake every morning and I'm one year post treatment... Protein helps you heal - nutrition gives your body the best shot at fighting and healing... ) Plus if your going to go for rads and chemo, you need to bulk up starting now. I know people will say eat all your favorite foods - etc.. And do but verything in moderation.. Eat a lot of calories 2500-3000 or more - but try to make it healthy calories too. And educate yourself on this disease... Knowledge is power. Know what treatment to expect - so you can ask your dr. informed questions.

A couple of things - if they tell you they got it all and you're fine - keep a very close eye on your neck and mouth what sometimes happens is they'll remove the original tumor and then send you home but a few stray cells that may be hiding in your nodes could eventually pick up steam and grow - swollen lymph nodes is good indicator. If this happens then high tail it back ASAP (nodes respond to inflammation etc... But I believe in the better safe than sorry adage.) Secondly
Try not to despair... We're here to help, and everyone here has their own story... You may share some similarities with all of us, but never be exactly like someone else. Some stuff here is scary - but it can prepare you, and just because someone with the same cancer is having a super hard time doesn't mean you will. Hugs and good luck!


Hi Cheryld, thank you for the warm welcome. During surgery conducted before PET, they did a frozen dissection (while I was under the knife or recovering) and the Dr. says it SCC. He did say it had good lines and there were no tails. I don't know what that really means but know it is good.
I am suspicious of the lymph nodes. Since Dr. did not have PET prior to surgery, left them alone. Since they are swollen (and he did a needle biopsy during surgery), I think they are a problem.

I don't think it will be hard for me to give up alcohol. 14 years ago I took a position that tobacco was going to prevent me from seeing my son grow up and to see his grand-kids. Not drinking to live longer is an easy decision.

Eating. Sore throat has made it almost impossible to eat. Started eating yogurt. Now beginning to be a blender master. Everything blended. Starting with fruits and veggies and soup.

Wondering a good source of high protein to add to liquid meals?

I am getting medical care at Walter Reed-Bethesda National Navy Medical Center. The have care manager and integrated teams. I believe it is the best care I can get.

Thanks to all who share their experiences on these pages.

Ken
Ken
_________________________
48YO M, hlthy, xsmkr(quit 14yrs ago), mod drinkr
1 mo sore throat w/neck lump 3/12
SCC tonsil, lym nodes
4/12/12 rad tonslctmy, mets in lymph nodes
5/8 PEG, 5/10 PORT 7/3/12 Last Chemo (Cisplatin)| 7/10/12 Last RAD | 9/6/12 MRI=No New Cancer
BSA Scout Ldr w/strng desire to live & beat cancer

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#148346 - 04/16/12 01:37 AM Re: Newbie [Re: KenEggman]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Hi again! If it's HPV related then they'll radiate your neck to clobber the nodes. We're split 50 50 here on neck dissections. For my type of C - non HPV - they generally remove them, and any other tumor. For HPV, they may remove or debulk the tumor - but leave the nodes... If they still hang around post treatment then they sometimes go back in, but HPV does respond well to treatment.

The FNA (needle biopsy) will give you som answers. The clear margins are good.. Tails is new to me I have to look that up.

Proteins - well I'm a veg head - sooooo - I use a combination vegan, or vegetarian protein powder - usually they are a combination, hemp, chia, rice, pea... That gives you all the protein requirements found in a meat protein. One scoop generally has 16-25 gms of protein. So add a scoop a few time a day to whatever you blend (most are berry, vanilla or chocolate - but some are unflavored.) it's smooth so it should go down okay... my morning shake has one scoop of Sunwarrior (chocolate) pea protein, and one scoop of vanilla vegetarian (only because they don't have chocolate) hemp, pea etc... Mix. I get 56 gms of protein, when you include the cottage cheese I toss in. That's my protein for the day.. I do have a little in the evening but if I don't I know I'm not lacking. I personally don't do the whey, or soy proteins, - whey is animal (milk based) and soy is far too manipulated. I pretty much eat what I want but generally stay away from sugars, white flours, and dairy. (cheese is my occasional sin) and ice cream. smile the sugar thing is another reason I don't do whey, or soy powders most have it. The vegetarian news I use have stevia - a natural non glycemic sweetener.

Good luck, treatment is not easy but you will get through it. Have faith.
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#148351 - 04/16/12 02:00 AM Re: Newbie [Re: KenEggman]
me.shirl Offline
Member

Registered: 04/15/12
Posts: 2
Loc: Missouri
I too am a newbie as of today. ready notes and formums and trying to getthe hang of thissite. You all are great and this will be very helpful.
I am HPV-16 tonsil, neck diagnosis with a trach and g-tube starting rad & chemo 4/25 at Siteman Cancer Center. Scared, but a fighter. Reading everything I can and want to be a part of thissite. Looking to get involved and learn and wave off depression too

me.shirl

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#148355 - 04/16/12 04:30 AM Re: Newbie [Re: me.shirl]
MikeM Offline
Contributing Member (25+ posts)

Registered: 01/21/12
Posts: 42
Loc: California
Hi Ken, At four days I hope the pain meds are working well. Still in Hospital? The next week or so is painful but improves quickly afterwards. Once you get the test results and decide on next steps we can compare notes... Grape Popsicles the vanilla pudding got me thru it.
_________________________
Nov2011Tonsil Cancer Stage3 T1N1 HPV+, Non-smoker, slight drinker
Dec2011 Radical Tonsilectomy (TORS),
Jan2012 Neck Disection areas 2,3,4
Feb2012 Opinions from 5 RO's decision for No Rads/No Chemo
Jan2013 all clear at 1 year , continue regular check-ups
Jan2014 all clear at 2 years, less frequent check-ups
Jan2015 all clear at 3 years, MRI, chest x-ray, blood work all good

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#148550 - 04/20/12 05:20 AM Re: Newbie [Re: MikeM]
kaitlynpropp Offline
Member

Registered: 04/20/12
Posts: 3
Loc: Arizona
Hi Ken!
I am a 19 year old girl and I was diagnosed with SCC on the tongue back in December of 2011. Luckily I didn't need radiation or chemo, but I did have my lymph nodes removed and part of my tongue. My mom has been encouraging me to change my diet inorder to boost my immune system. She found an amazing book called, Anti cancer, a new way of life (version 2) that has helped me a ton! It gives you not only different diet tips on healthy cancer fighting foods but it also works on your mental being. It is a great book and if you are still looking for something to help you fight your cancer definitely check this book out! Even if it is all gone, it will help you live a healthier life style though!
_________________________
Female. 19 years old. Non smoker/drinker. HPV negative. Stage 3 Squamous cell on the side of the tongue. Had lymph nodes removed and part of the tongue.

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#148555 - 04/20/12 12:29 PM Re: Newbie [Re: kaitlynpropp]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
Kathy,

I am really surprised with your presentation that radiation and chemo were not highly suggested. Non HPV oral cancers, whether or not linked to tobacco, have proven very difficult to treat. Please watch carefully for any changes in your oral cavity and seek immediate competant care if you see something.
_________________________
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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#148561 - 04/20/12 02:47 PM Re: Newbie [Re: davidcpa]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Ken! Welcome Big Guy! Glad you found OCF, Sorry you had to brotha!

I'm going to use my favorite quote here, "He who has a "why" to live can bare with almost any "how"." -Neitzche

As a family man myself brotha, my wife and two young boys were my why, and because I have them I'll walk through hell to stay with them, and I know you "get" that.

Getting through this experience and then learning to live with the aftermath requires help...remember that you are not alone and that no matter how macho we try to be as men, everyone needs help, especially in this situation. It does my heart good to see you on these forums my friend and plugging in, that's the hardest step for a lot of men to take.

The only thing we can control, after we've chosen our medical team, is our nutrition and attitude, and both are of the utmost importance making it through this ordeal. Nutrition is important in everyday life but even more so when your body is being severely broken down, which is why I view treatment like high intensity PT and recommend eating like you are a high level athlete, training to be a champion. You are what you eat.

Proper nutrition when it comes to cancer patients isn't very well understood really as our Dr's are poorly trained on nutrition and our nutritionists really don't understand what the body goes through when battling cancer, there's a disconnect there sadly. The system of a cancer patient goes into a hyper-metabolic state due to hormones produced by the immune response to the disease. The hormones reduce the amount of nutrition absorbed through digestion, while the body directs the lions share of amino acids to the immune response. This causes your body to start breaking down it's own lean muscle mass for fuel causing a significant weight loss. It's a wasting condition called Cachexia, or cancer related weight loss.

This is important to understand so you can battle the condition, also patients with higher percentages of lean muscle mass have higher survival rates and generally withstand treatment better. Muscle is a fast burning fuel for the body and it will catabolize that tissue first before our fat reserves which is why proper protein intake is critical. Protein provides the body with the building blocks (amino acids) it needs to repair itself, that being said, not all protein is created, nor absorbed equally.

The benchmark or "gold standard" for protein is the egg. For myself, I lived in the gym and competed at the collegiate level in athletics so nutrition, and the benefit of eggs and whey protein were drilled into me. The egg has a biological value (BV) of 93, is packed with vitamins and minerals, good fat, and it's protein is efficiently absorbed in the body. The downfall to eggs is to get the amount of protein you need it takes a "lot" of eggs and eating is a challenge in our circumstance, so protein powders makes sense.

Now the three common types of protein powders are Whey, Soy and then the Vegan/Vegetarian powders that use mixed plant based proteins to get a "complete" (all essential amino acids) powder. The difference between these proteins are uptake or absorption rate and the obvious dietary restriction based on personal beliefs/preferences.

Whey has the fastest uptake/absorption rate of all the proteins, it's BV is over 100 (higher than an egg) and is the choice for most serious athletes and bodybuilders. In everyday life if you are not training heavily or constantly breaking down your body to rebuild it, Whey doesn't make sense due to it's fast uptake as the body will only absorb what it needs at that time and then pass the rest. This is also why protein intake needs to be divided up through several small meals throughout the day with no more than around 30g taken in at one time, 20g's is what's recommended for regular activity levels, 30g's for those with higher.

Soy and plant based protein powders are around the same BV as the egg, soy having the same uptake value and the plant based being a little slower. These proteins are usually recommended for everyday activity levels as a slower uptake generally leads to better absorption as your body isn't in a hyper-metabolic state and sucking up nutrients as fast.

It comes down to a game really, using nutrition to manipulate hormone responses in the body and promote recovery. Athletes and top level trainers use a specific ratio as a guide for macro nutrient (protein, fats, carbs) intake to ensure performance, which is 40-50% of the calories through carbs, 20-30% protein, 20-30% fat, which is coined as "The Golden Ratio". To understand where your levels are at you have to count calories and macro nutrient intake, which is made easy by today's smart phones with apps like Calorie Counter by Fatsecret(which is what I use). To get the % just know that proteins and carbs hold 4 calories per gram, and fats hold 9. Multiply the number of grams in the respected macro-nutrient by how many calories it holds, then divide that number by the number of calories taken in during the day. Example on a 2500 calorie per day diet, 55g-83g of fat, 125g-185g of protein, and 250g-312g of carbs (complex like multigrains etc). 2500 x percentage desired (.2, .3, .4, .5 etc..) then divided by 4 for proteins/carbs or divided by 9 for fats.

Why is this important? Your body needs the proper fuel and building blocks to fight, rebuild itself, energy and hormone production. Testosterone, arguably the most important hormone in the male system (key in muscle development, mood stabilization, outlook, sex drive etc...) can be largely promoted by nutrition. The more good fats (mono unsaturated and poly unsaturated, MUFA's and PUFA's) in a man's diet the higher the testosterone production. Too much protein can lower testosterone production (as well as pain medications, antidepressants, stress, anxiety...) so it's important to keep balance there. Testosterone is key in building and maintaining muscle mass as is protein.

Personally I use Whey due to my lifestyle (lifting and heavy exercise) as my main source of protein, I also juice fresh fruits and vegetables, blend oatmeal and other foods to sustain my weight (I'm on an all liquid diet) and religiously keep to my nutrition plan, tracking it all by Calorie Counter by Fatsecret on my android phone (iPhone app too).

As far as keeping your spirits up and a great attitude, keep plugging into these forums for advice, support and friendship, it's what we do. I read uplifting, inspiring books, music and movies to keep me in the right mindset throughout the day as well.

Good luck my friend, I apologize for the book..nutrition is a passion of mine smile

Eric



Edited by EricS (04/20/12 03:06 PM)
Edit Reason: always spelling
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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#148568 - 04/20/12 04:22 PM Re: Newbie [Re: davidcpa]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Hi kaitlyn - I've read the book and love it... It's great though not everyone supports it as a way of life - I certainly do... Not only because of the background research that's found in it though it is pretty compelling, but because it's common sense - want to be healthy, don't eat junk....tweak your diet, And avoid stress, want to improve your immune system, avoid bad habits... It's no guarantee of not having a recurrence. (frankly nothing is) .. But I do think that being in good shape is of primary importance if it does happen, and it puts you in a better position to fight...

That said I agree with David. I think it does depend on staging and involvement of the tumor - but my dr who is tops in his field in Canada - told me in his opinion, I was cured - but he still sent me for rads and chemo. Be diligent about knowing your mouth, and getting to know what's normal for your neck. I'm almost a year out of radiation, I check my neck, daily and mouth every few days. It takes a few minutes but it's a bit of reassurance, plus if something does pop up you note it immediately and are not left wondering how long that's been there... wink welcome to our group - there are a few people here close to your age,

Take care!!!
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#148652 - 04/22/12 11:39 PM Re: Newbie [Re: kaitlynpropp]
KenEggman Offline
Contributing Member (25+ posts)

Registered: 04/14/12
Posts: 32
Loc: VA, USA
Kaitlynpropp, thanks for sharing the book info, I will definitely check it out.
_________________________
48YO M, hlthy, xsmkr(quit 14yrs ago), mod drinkr
1 mo sore throat w/neck lump 3/12
SCC tonsil, lym nodes
4/12/12 rad tonslctmy, mets in lymph nodes
5/8 PEG, 5/10 PORT 7/3/12 Last Chemo (Cisplatin)| 7/10/12 Last RAD | 9/6/12 MRI=No New Cancer
BSA Scout Ldr w/strng desire to live & beat cancer

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