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#10431 - 05/04/07 02:35 PM How to get the most out of this forum
Gary Offline
Administrator, Resident radiation science expert
Patient Advocate (old timer, 2000 posts)

Registered: 11/27/02
Posts: 3542
Loc: San Francisco CA
Ok, Petey had a good idea so I am going to open this up to everyone and the best ideas and suggestions will be placed in a "how to" guide.

Consider also that some visitors are not computer literate so instructions to the lowest common denominator should be considered for example "how to start your own topic" instead of burying yourself in someone elses thread. We have made every attempt to make the forum as easy to use as is possible but some persons still need help.

Some don't realize that posting in all caps is like having someone shout at you.

Many have posted acronyms over the years and they need to be in the "how to guide as well".
things like; CT = Cat Scan (or computer aided tomography for you technical types).
or ct = chemotherapy. Mark had made a good start on that a few years back.

Other things to consider are that many questions are already answered in the main (home) pages. How do we more efficiently get a new person there?

I personally would rather deal with the personal, individual, emotional, supportive and hope giving aspects than, like a parrot, repeating the same information over and over again. This aspect has taken its toll on senior members here and it impacts the quality of the responses. I, and I am sure Brian as well, get a fair amount of feedback on this.

And above ALL ELSE we must ALWAYS treat each other with dignity, respect and civility.
_________________________
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)

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#10432 - 05/04/07 05:52 PM Re: How to get the most out of this forum
davidcpa Offline

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

Registered: 09/28/06
Posts: 8309
Loc: Gulfport, Florida
Gary, My two favorites:

How to Edit Signature Line:

It helps the responder to your Post if you include facts about your Diagnosis and Treatment, etc under your Signature. See mine below as an example. To add to your signature go to the top of the screen and click on MY PROFILE. Then click on EDIT PROFILE and scroll down to the Signature Block and type away. Once you add it, It appears every post you make and your questions and even responses are more understandable.


How to order Carnation Instant Breakfast:

Try Carnation Instant Breakfast VHC. It has 560 nutritional balanced calories in a 8 oz can and will cut the misery and the time in feedings. You order it thru your pharmacy dept and some have suggested that if you get a prescription for it, your insurance company will pick up the tab. I only pay about $32.00 per 24 can case at Walgreens. That's only $5.00 a day for 2000 calories. Click on this link:

http://www.nestle-nutrition.com/family.aspx?objectID=86E49EB3-BE25-4B16-81D7-235E6F6E5183

Under the PURCHASE PRODUCTS tab, select FIND A PHARMACY NEAR YOU.

Under the PRODUCT NAME pull down, select Carnation Instant Breakfast Lactose Free VHC and fill in your zip code and they will give you a list of pharmacies that carries it.

At the top of that list note the Product Code and NDC Number in case that helps you when you call the store. When I call Walgreens it only takes a day or 2 at the most to get it delivered to the store and they call me when it's in.

You can also order it online but it usually costs more and takes much longer to get.

No, I do not work for the company nor do I get a commission (I wish) but this product made my feeding life during and post treatment much much easier and I am sure it will do the same for you.
_________________________
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 14, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#10433 - 05/04/07 06:35 PM Re: How to get the most out of this forum
PeteyB Offline
"Above & Beyond" Member (300+ posts)

Registered: 03/13/07
Posts: 525
Loc: LAKE WORTH, FLORIDA
Petey
_________________________
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up!

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#10434 - 05/04/07 06:40 PM Re: How to get the most out of this forum
Leslie B Offline
"Above & Beyond" Member (500+ posts)

Registered: 05/05/06
Posts: 713
Loc: Washington DC
Here's something about the search engines:
------

OCF has two search engines that will enable you to sort through the wealth of information on this site to find exactly what you need to know. Use them both; you may find that your questions have already been answered.

The "search" link at the top of each of the forum pages (in the center, under the New Topic and Post Reply buttons) goes to a search engine just for the message boards. You can limit your search to a specific forum -- or, for maximum results, choose to Search All Open Forums.

The "search" link at the bottom of each of the forum pages (in the dark gray area) goes to a search engine for the main OCF website. Using this, you can research a variety of topics, including many scientific papers on oral cancer, the best hospitals for cancer treatment, explanations of clinical trials, facts about oral cancer, etc. The site administrators work tirelessly to ensure that the information in the main part of the site is the most recent and best available. A link to this search engine is also on the main OCF page (www.oralcancerfoundation.org).

-----------
This is a great idea.

All the best,
Leslie
_________________________
Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.

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#10435 - 05/05/07 06:29 AM Re: How to get the most out of this forum
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2600
Loc: TN
Great idea on having a "how to get the most out of this forum" section. But the most important thing when a new person comes is to be able to feel that there is hope and that someone else understands what you are going thru. That is exactly what I got when I first came here plus a wealth of helpful information. I was a basket case of emotions and anxiety worrying over my son's cancer, but others were patient with me until I learned from example and figured out the search engines and the signature line. I even put together my own list of alphabetized acronyms taken from other helpful posters which I've placed here: http://web.utk.edu/~aalix/abbreviations.html.

The last thing I needed in my anxiety driven state when I first posted, was to have someone insist I needed to follow "rules" as tho' it was a "condition" on my getting any help, especially if I was being shouted at in all caps! Rules were the last thing on my mind at the time. I was hanging on to a cliff by my fingernails and slipping fast. I needed gentleness and patience and compassion from someone who had "been there" and that is what I got. With newcomers, until they get more acclimated to the site, it wouldn't hurt to look up info for them and let them know how you found it for their future reference. The "how to get the most out of this forum" would be a great place for newcomers to go to at their own pace.
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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#10436 - 05/05/07 06:33 AM Re: How to get the most out of this forum
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2600
Loc: TN
Whoops! just noticed on my post that the link for abbreviations has a period at the end (end of sentence) which should not be included in the url. Just go to: http://web.utk.edu/~aalix/abbreviations.html No period. Sorry about that. frown
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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#10437 - 05/05/07 08:02 AM Re: How to get the most out of this forum
Gary Offline
Administrator, Resident radiation science expert
Patient Advocate (old timer, 2000 posts)

Registered: 11/27/02
Posts: 3542
Loc: San Francisco CA
Anne-Marie,
you have captured exacly what I had in mind when I started this topic. I was scared out of my wits when I came here. Panic might be a better word. Easing the transistion from shock/panic to action/education and knowledge is the game plan here.

I did a search on the main link (using the search engine one the bottom of the page-for "cancer definitions") just moments ago and couldn't find a link to the most common cancer definitions/abbreviations (which really helps patients/caregiver understand their patient records and acronyms frequently used here). You don't have to go the the UK, here is a link to the NCI (US national Cancer Institue) definitions that I frequently cite:
http://www.cancer.gov/dictionary/

Oops - I stand corrected - we already have an NCI cancer definitions link in the "resources" section on the main page. But these are the kinds of glitches I am talking about and oftentimes it is as easy to fix and adding a few "keywords" by our webmaster.

But for our UK patients, they may have slightly different terminology so more than one link is perfectly ok as well.

As there are "parlimentary rules of order", there has to be some for the forum as well. We have learned through experience, the hard way though, this is unavoidable and we would hope that those coming here would understand that it's for their own protection (but they won't all be in caps I promise!)

There are far too many scam artists out there and occasionally persons will advocate other than standard medical care - faith healing, etc. We also manage to get a few "phychologically challenged" persons here a year and that must be dealt with also.

We make every effort to maintain a minimum level of quality without being imposing.
_________________________
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)

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