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#22403 03-04-2007 11:00 AM
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Hi (again).
I came across this site while doing preliminary research about oral cancer on the net.
This looks to be the best forum for OC I've ever seen.

About 5 or 6 days ago I felt a small lesion on my upper pallet towards the back.
It's about 3/8" long and 3/16" wide. It appears to be reddish with some white spots on it. It's not necessarily hard or bony...kinda inbetween.

I am seeing my detist tomorrow and will probably insist on a biopsy from an ENT or whatever. I fall into the higher risk area of smoker and drinker.
Age:53.

I suppose he'll want to do a brush test, but I assume I'll not want to wait another 10 days to see if it goes away (if test is negative).

I've already accumulated so much information from reading the posts and general information area.
Depending on the outcome of a biopsy, I won't necessarily have to have my pallete cut into.
Small pinpoint doses of radiation may be suggested. I wonder, if that is the case, has anyone ever insisted that it be cut out?

Anyways...first things first. See dentist tomorrow.

Nice to have a place like this!

#22404 03-04-2007 12:09 PM
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Hi Jeff,
and welcome to the forum. Why a dentist? Why not go to an ENT or head & neck surgeon and get a proper diagnosis. You already know you are at a higher risk because of your lifestyle choices and you are in the perfect age group for this disease to appear. Not to scare you but GET the Dx! It may be nothing and there are other things it could be besides cancer. Without a definitive biopsy how will you really know and you must ask what is the accuracy of the brush biopsy test. Pathology reports from a punch or snip type of biopsy are the gold standard. It's too soon to start speculating on your treatment options. It's been often said here: "It ain't cancer until the pathology report says it is".

More information on brush biopsy see: http://www.oralcancerfoundation.org/diagnosis/detailed_brush_cytology.htm


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)
#22405 03-04-2007 01:51 PM
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Thanks for the welcome.
I figured my Dentist could see me right away and start from there, maybe recommend an ENT.
I fully intend to see an ENT...and damn soon, maybe tomorrow if I'm lucky.
I've never made an appointment with an ENT. I hope it's not like..."we can see you in 5 days..."
I'd prefer a biopsy be done within a day or so.
Does that happen?

#22406 03-04-2007 04:47 PM
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Jeff.....do it now. My dentist did not recognize my lesion.....on my gums, which spread to my palate....not to scare you, but it was red and flat, with some white spots. It changed a bit from day to day, but it did not get better. The part on my gums was sore, but the rest of it was not, so that is not a test. I don't want to scare you, but I do want to urge you to get an excisional biopsy, not just the brush test. If the brush test is negative, will you trust it? Anybody you see will do the biopsy while you are there, and will send it off immediately. It will take a few days for the report perhaps..perhaps not. Mine was sent away, and I still had the report in five days, including a weekend. In San Diego, you should have it faster. The ENT can do the biopsy, but the dentist should not.

Why not CALL the dentist for the referral to the ENT? that would save a step. The dentist would possibly have an opinion, but it is out of his area of expertise....or at least it was out of MY dentist's area of expertise, and it cost me dearly, in a number of ways.

Don't wait. Please. If it is nothing, please let us know so we can celebrate with you. And if it is something worrisome, let us know that too, so we can worry with you.

...sorry if I sound pushy....but I feel very strongly about this, since your description sounds like mine. Maybe it is an injury from eating scratchy food. How long has it been there? That is important to know. If it has been there as long as two weeks without noticeable improvement, it is most likely pretty important that you get attention very soon.


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
#22407 03-04-2007 04:49 PM
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..one more thing from your pushy new friend: If you just noticed this 5-6 days ago, and it has not improved in that time, it most likely has been there for considerably longer than that. You only noticed it when it was large enough for you to feel.

Go.


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
#22408 03-05-2007 07:03 AM
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The biopsy is not 100%. I know of many, me included, that had neg biopsy and it turned out to be SCC. Just be careful.

Rob J


6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
#22409 03-06-2007 02:24 PM
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All good advice. I went into UCSD medical center this morning (tue). The ENT looked at it and thinks it might be just a pyogenic granuloma. He snipped it out and I am awaiting the results of the biopsy.
I researched what that is and understand that some SCC's can be mistaken for pyogenic granuloma.

I am somewhat heartened that this "nodule" appeared very quickly (almost overnight it seems)...and that it was rather smooth, and was on the roof of my mouth, a place that is uncommon for SCC to appear.
I didn't know the growth rate of Oral SCC and was concerned. I also can't remember really damaging the area with food.

Actually, the thorough way to really make sure to remove it all is not to snip it off as he did, but to cut it out and stitch it back up (researched).

I still have to wait untill Friday for the results. I am hoping for the best (statistically)and if it's benign...will consider having the area cut out more and stitched up.

Also...it's not beyond the possiblity of a tumor up in that tiny (mucus membrane?) area.

Anyways...here's hoping.

#22410 03-06-2007 05:48 PM
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I am hoping that the biopsy confirms the prediction that it is benign. I would be very, very pleased for you. You have learned quite a bit in the past few days. I'll have to get you to research a few things for ME!


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
#22411 03-06-2007 06:20 PM
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Jeff

Just know that we are here waiting rigth along with you ! And I can say I think most of us have become pretty good at research, my RO just asked me if I had a medical background or If I was a science freak , I replied i almost Failed every science class I ever took , and i was a medical receptionist for planned parenthood so if you consider scheduling pap smear a medical back ground then ...... He said well I am impressed you know so much and have such an understanding of this ,,,I replied " I have to this is my LIFE " a thought I think we all have !


Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
#22412 03-07-2007 01:40 AM
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Jeff,

Just for your added information my husband saw two dentists and an ENT. His first appointment was on 08/30/06. All three of them did not think his lesion looked like cancer, but like a traumatic injury, a burn or he bit his tongue. Fortunately and since he was a smoker, they all at least passed him on to the next person and the ENT did a biopsy on 9/11. The ENT came out of it afterwards and still said it did not look like cancer, did not come out like cancer and he felt good about it. The next day 9/12/06 he called and said it was cancer. So unfortunately, they really can


Barbara S
C/G to Michael age 64, stage 1 base of tongue SC cancer and a stage one for a couple lymph nodes, diagnosed 09/12/06, IMRT radiation 10/24/06 to 12/05/06 , last PET / CT scan 11/7/11 - still cancer free!!!
#22413 03-07-2007 09:02 AM
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Jeff,
if you are fortunate in that the biopsy does indeed come back negative QUIT SMOKING NOW! Or inevitably you might be be joining our little club (as others have said - "the one that nobody wants to join" Danny Boy liked that one - he finally got to quit - he died, the rest of us are stuck in this purgatory). Tobacco products are implicated in about 80% of oral cancer cases. It's a tough wake up call.

I applaud your courage in stepping up and getting to the heart of it so quickly.


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)
#22414 03-07-2007 03:47 PM
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As Gary says, it goes sorta like The Eagles with Hotel California; "you can check out anytime you like but you can never leave".

Bill D.


Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
#22415 03-13-2007 07:50 PM
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My biopsy of top of the mouth nodule removal results:
Negative for SCC. Pyogenic Granuloma, so it seems.

My biopsy doctors mother died on day of biopsy (TUE last week) and he just got back today (TUE) and was in surgery when I phoned (a week later about the results).

I was a little bit curt with his nurse, having to call THEM a week later about the results, having to hang around the phone all the time as this doctor will not leave a phone msg.

She assured me that whatever early stage of cancer I may have had...those 4 days wouldn't have meant much.
She's probably right. I suppose.

From me being a newcomer and reading all your posts...you all taught me to be somewhat an aggressor.

Is it wrong for me to want to schedule another complete thorough ENT exam? Including a complete review of that roof of mouth area by a personal ENT and not a UCSD one? Another biopsy and complete cut out and stitch up of that pyogenic granuloma?

Last and most important, I've never been so humbled and honored to be among you all.
I've contributed nothing here except for my upcoming donation and my good luck.

I've got my work to do. Smoking a pack a day and often drinking to excess.

I quit drinking for a full 10 days and didn't even miss alcohol..then, I relapsed somewhat. Under pressure (within and from without).

I'm looking into 2 crutches (besides will power).
One drug takes the high you get from drinking.
The other drug takes out the absorbtion of nicotine.

These problems of mine don't hold a candle next to the flame of courage and love of those going thru treatment..and those around them, helping..and those that have been there.

If you are in the San Diego area and need any kind of transport or whatever...have Jeffdc will travel.

#22416 03-13-2007 11:06 PM
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Before you all discount me as a newb, I tended to my father who died of prostate cancer 1+ years ago.

I set up in care service (she didn't know how to cook an egg)... to changing his sheets and his diapers and coaxing my dad to drink Ensure.

I thought nothing of this duty...as my dad had done the same for me as an infant.

I may not have that favor when I need that kind of care.

Anyone here in San Diego who has noone...how does one help?

#22417 03-14-2007 01:46 AM
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Jeff,

Just for your information, my husband used to smoke about 3 packs of cigarettes per day. He quit on 9/5/06, and was diagnosed with cancer on 9/12/06. He already did have the painful sore on this tongue when he quit. He also quit drinking about 20 years ago and he used to do a lot of that too. His oncologist told us that 95% of head and neck cancer victims smoked


Barbara S
C/G to Michael age 64, stage 1 base of tongue SC cancer and a stage one for a couple lymph nodes, diagnosed 09/12/06, IMRT radiation 10/24/06 to 12/05/06 , last PET / CT scan 11/7/11 - still cancer free!!!
#22418 03-14-2007 07:09 AM
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The numbers that I have seen are that 25% of H&N cancer patients NEVER drank or smoked so where the doctor got that number is beyond me (maybe that's in his personal experience). Maybe Brian has something to share on this. HPV has fairly recently been cited as a causitive factor as well.

Straight from the NCI:

"Oral Cancer: Who's at Risk?

Doctors cannot always explain why one person develops oral cancer and another does not. However, we do know that this disease is not contagious. You cannot "catch" oral cancer from another person.

Research has shown that people with certain risk factors are more likely than others to develop oral cancer. A risk factor is anything that increases your chance of developing a disease.

The following are risk factors for oral cancer:

Tobacco: Tobacco use accounts for most oral cancers. Smoking cigarettes, cigars, or pipes; using chewing tobacco; and dipping snuff are all linked to oral cancer. The use of other tobacco products (such as bidis and kreteks) may also increase the risk of oral cancer. Heavy smokers who use tobacco for a long time are most at risk. The risk is even higher for tobacco users who drink alcohol heavily. In fact, three out of four oral cancers occur in people who use alcohol, tobacco, or both alcohol and tobacco.
Alcohol: People who drink alcohol are more likely to develop oral cancer than people who don't drink. The risk increases with the amount of alcohol that a person consumes. The risk increases even more if the person both drinks alcohol and uses tobacco."

You did notice the "3 out of 4"...


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)
#22419 03-14-2007 10:18 AM
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Gary is right on the 75%, that comes from a peer-reviewed article by Mashberg et al. Although I think that given that decade old article and what we know about the emerging new HPV etiology, that number is due for revision. Incidence of oral cancer in the US will increase 11% this year alone. Given that tobacco use in the US has declined every year for the last ten years, there has to be a replacement cause keeping the number consistent for that period of time, and actually increasing it this year. HPV16 is going to fill that slot. And Gary is right, cancer is not contagious, but a virus that can cause it can be easily transferred from one person to another. Familial histories which might lead a person to believe in a heredity link to some disease processes, when looked at carefully, can reveal that a family that shares similar genes, also shares similar poor lifestyle choices in diet, exercise, smoking, alcohol use, and as discussed below lack of involvement with healthcare professionals.

Tobacco continues to be a factor for more than a decade after cessation, but studies into this that are finite in terms of when that damage might be mitigated do not exist. Anecdotally, treating docs that I work with frequently say to me that a person that was a multi pack a day smoker, even two decades past, is still at risk. This comes from their clinical experiences, not from published articles. The issue of alcohol and tobacco acting synergistically is well established. The alcohol thins the cell wall membranes of the mouth allowing the easier access of the combustion by-product carcinogens to the cell. Alcohol in high quantities can be a risk factor all on its own in non-smokers.

What you have to be careful of, and many studies do not consider well, are things that create a bias in the data. For instance, think about these potential skewing factors to a study. People that smoke often engage in other risk factors. This is a lifestyle issue. Public health studies show that smokers have an education disadvantage when you look at them as a whole. That doesn


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#22420 03-16-2007 02:43 PM
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Early detection of Oral Cancer...it needs more public awareness.

Maybe the issue below belongs elsewhere in this forum. It needs a congressional hearing if you ask me.

Advances in cancer-fighting medicine and technology have resulted in increasing numbers of cancer survivors. At the same time, an aging and significantly large population of baby boomers will mean an increase in cancer diagnoses as this pivotal group passes 65, the age at which cancer rates spike. Add to the mix a slowing growth in the supply of oncologists, and according to the authors of the study, the result is a drastic shortage of oncologists by 2020, just as cancer rates in the country are expected to soar.

Even current figures are worrisome. There are about 10,400 oncologists in the United States today with roughly 500 new ones entering the workforce each year. Yet, an estimated 1.4 million people will be diagnosed with cancer in 2007. Looking ahead, the study predicts a 48 percent jump in cancer incidence and an 81 percent increase in Americans living with or surviving cancer in the years leading up to 2020. But the crunch might be felt even earlier as oncologist caseloads rise. "It will likely get tougher to get an appointment with an oncologist over the next few years," predicts one of the study's authors, Edward Salsberg, director of the Center for Workforce Studies at the Association of American Medical Colleges, which conducted the study.

If a boomer does manage to get penciled in, they still may not have much cause for celebration. "The medical oncologist of the future might be more of a team leader," says Michael Goldstein, chair of the ASCO (American Society of Clinical Oncology) Workforce in Oncology Task Force and an oncologist at Beth Israel Deaconess Medical Center in Boston. "There will be less face-to-face time with a single patient." Once a patient is treated, she will be more likely to be seen by a primary-care physician and less likely to receive follow-up care from an oncologist, who would need to focus on urgent or new cases, not continued care. It's a potential trend that has only 15 percent of surveyed oncologists convinced it might alleviate the shortage. Study author Salsberg suggests this might be due to the fact that "many oncologists have already heard that there will be a shortage in primary-care doctors as well, or it's because cancer care has gotten so complicated that you really do need to be seen by a specialist."


http://www.msnbc.msn.com/id/17599898/site/newsweek/?from=rss

#22421 03-27-2007 05:49 AM
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The problem with doctors (my sister is one...) is that most are suffering from tunnel vision. They aren't focused on the total package... I believe this is a result of the "specialized" tag most seem to pursue after medical school.

My mom's jaw was giving her pain for over a year before her diagnosis. Her GP attributed the pain to her arthritis and prescribed pain meds. In November of 2005, she went to the dentist (he noticed nothing). Throughout December of that year, she went through several tests to determine if she could handle a hernia repair operation.
This testing uncovered a corated artery which was repaired in January. Again, the T4 cancer lurking in her mouth remained undiscovered.

In Feb of last year, she went to see her GP because the top of her mouth was sore. He prescribed her an anti-biotic (which did nothing) making the mistaken assumption that the tubes put down my mom

#22422 03-27-2007 09:56 AM
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When you suspect some growth in your mouth, it is important that you seek medical care at once to see what the problem is. Whether you see a general dentist, a maxillofacial surgeon, a familly physician or an ENT, they MUST come to a diagnosis. Remember that a general dentist can easily obtain a biospy and get the pathology report within a week. You do not need to have an ENT to do this. Also, some physicians are not trained to indentify oral lesions readily so do not take their words for granted. I am not saying this because I am in the dental profession but because of our training in the oral cavity, we know what is normal and what is not. In my career, I came across a case in which the patient has large lesion on his left side of the tounge. His physician told him that his lesion was due to a sharp tooth in the mouth and the tooth should be either removed or capped to remove irritation. When he came to see me to have his tooth removed, it was obvious that it is a SCCA of the tounge and the biopsy turned out that it is. My point is to not to rule out dentists when comes to oral cancer diagnosis. Use all professionals to get your answers. If someone you see can't give you a diagnosis (either DDS or MD), then ask for someone else who can. If I choose one person to diagnose my oral lesion, there is no other than Oral Pathologist (a dental specialty). You may have to go to a dental school to find them as most are in academia. DP

#22423 03-29-2007 09:30 AM
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Before I was diagnosed I went to my primary care and she even did a strep swab off the left tonsil. When she did that I twitched because it hurt and she did not say a word. I feel she did not know what to look for and the ENT they sent me to was on it like a duck on a june bug. So to be safe I would recommend going to the ENT or someone who deals in oral cancers.


Bill B. Dx 10-16-06 Stage 4 T2N2bM0 SCC Left Tonsil,3 nodes. 1st tx 11-28-06, last tx 1-8-07. 3x Cisplatlin, 5fu pump, and Doxetaxel. Modified neck dissection,20 Nodes removed, all clear 02-21-07. HPV+,33 IMRT start 3-22-07 70GY,Completed 05-04-07 smile
#22424 03-29-2007 12:30 PM
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Reading the above just lets all of us know what we are up against in finding a way to identify and stop this form of cancer. A daunting challange, but one well taken. Amy in the Ozarks.


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

:
#22425 03-29-2007 02:43 PM
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If you are near a dental school / university healthcare system, I would add a specialty to Dr. Phan's recommendation and that is an oral medicine specialist. Memeber of the AAOM, a small sub group in dentistry, they are seldom in private practice and are mostly located at dental schools and treatment facilities. Their extra training makes them particularly adept at oral cancer diagnosis and management of issues once treatment begins. Oral Pathologists as well as those in medicine are the final stop though, since microscopic evaluation of biopsy sample is the gold standard for diagnosis.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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