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ACOR - how to join lists, such as KIDNEY-ONC, RARE CANCERS, CHROMOPHOBE-RCC, CANCER-DEPRESSION, CANCER-FINANCE, CAREGIVERS,

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

1) FIND YOUR LIST:

If you know the name of the mailing list you want to join, go to its webpage:
listserv.acor.org/archives/LISTNAME.html
FOR EXAMPLE -- listserv.acor.org/archives/kidney-onc.html

When you get to the archives page, click the box on the right that says "Subscribe / Unsub / Options."

(If you are unsure of the listname, go to www.acor.org, find the appropriate disease and list, and click on it.)

2) SIGN UP:

On the next page, enter your email address and first and last name. Click the box that says "Join."

3) CONFIRM YOUR SUBSCRIPTION:

You will receive onscreen notification that a confirmation request has been sent to your email address. When the confirmation request arrives, DO NOT click the link it contains; the link OFTEN FAILS. Instead, follow the directions in the letter to reply by email. (Reply by email to any confirmation request you receive from any listserv. It works better.)

4) YOU'RE IN!

After you have replied by email to the confirmation request, you will receive a welcoming letter from the mailing list and begin receiving posts from other members.

You'll probably want to explore the various settings available to optimise the use of the list(s) for your own particular requirements. ACOR uses very clunky, incredibly ancient and user-unfriendly technology and it's a nightmare to navigate the warren of settings facilities to make it usable.

I have found that the best way for me to use KIDNEY-ONC effectively has been to block off receiving emails, which are so voluminous as to choke one's email inbox. To do this, on the KIDNEY-ONC Home Page, click on "Subscriber's Corner" at top left of the window. Then, in Subscriber's Corner, click on the "My Settings" tab. For me, this brings up a listing of all the lists I'm on. You may well have only joined KIDNEY-ONC. The heading you should find will be
KIDNEY-ONC [Settings] [Post]
Clicking on [Settings] will bring up a menu. At the bottom, under miscellaneous, you'll find the facility for ticking a box labelled
"Mail delivery disabled temporarily". Make sure you have a tick in that box (clicking in the box toggles the tick on and off).
I have slightly different settings and ways of using different lists, but for KIDNEY-ONC, I simply go to the home page where I've set it up to display the most recent 80 posts. This way I can ensure that I don't fail to spot anything (unless I've been away from the page for a few days or more).
Past postings are archived below those messages, by month, for the last 15 years - plenty enough material for anyone! Well-directed searches in the archives, using the word-search facility can be very rewarding.

adman's picture
adman
Posts: 268
Joined: Jul 2012

much appreciated.

angec's picture
angec
Posts: 664
Joined: Mar 2012

THanks.. this is very helpful. I have tried to set this up many times and each time was not able to. I read this helpful post and i am awaiting my email confirmation. You are a bright light!!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

A pleasure to be of help. I was a bright light yesterday - told to stay away from pets, small children and pregnant women until I'm less radioactive - but I'll never get as bright as Fox!!

ClaraW
Posts: 64
Joined: Jun 2012

Mr TW,

I have read through many threads in the past month or so. I just can't believe you are not an oncologist already. No one is as up to scratch as you are in evidence based medicine.

I've been reading some information from UPTODATE. I think with your amount of medical knowlegde, you may want to consider reading the physician's part of Uptodate. All the managment guidelines regarding RCC are evidence based and they reference all their articles and are up dated every 6 months. I think you might need subscription but I highly recommend it.

Regards,
C

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Clara, I assure you I have no medical knowledge, save the shallow smattering I've picked up, like other laypeople here, by pursuing the rather strong personal interest that a bad RCC dx guarantees.

Thank you for your recommendation, which I've now delved into. I'm going to quarry for material in some parts but I'm sure the pro. briefings would be well outside my capacity. I do, however, have access to some other professionally targeted sites and I find the KIDNEY-ONC list a sure-fire way of keeping in touch with up-to-the-minute developments re RCC. Occasionally I get expressions of amazement if I come up with material no-one there has seen but most of the time I can depend on being educated by the much more knowledgeable folks there, many of them with professional affiliations.

I suspect uptodate may not have a high enough yield for me to actually subscribe to. I post on many websites and want to catch up a bit on various sports and science forums as well as areas of voluntary work where I've not been able to do my bit as punctiliously as I would have wished.

Looking out for your Sister-in-law will have shown you how specialised and mind-blowingly complex an area RCC is. Most oncolgists specialise in particular domains and renal cancer is one of the smaller areas. Medical science is by now so huge and rich that it's a case of the specialist coming to know absolutely everything about practically nothing! The uptodate site illustrates that - there is an enormous spread of material, with very little on RCC, or so it appears to me at first glance. Nonetheless I intend to dive into some bits I've already identified as ones I want to explore a bit more, so thanks again for the reference and I hope that your SIL is benefitting from all your solicitude and that she is getting better.

ClaraW
Posts: 64
Joined: Jun 2012

I've shown my SIL this site and she is very inspired by all the people who post here esp you, fox, alice and john. Both her and I have learnt so much from your reading your threads. She suggested to me yesterday that maybe Mr TW could write a review paper on it summarising all the treatment modalities currently available to grade4, stage 4. To which I replied' "if you read through all his threads and links, there's a good review already!"

She is quite well at the moment. Her last CT was better than expected - no involvement of vital organs! A few more lymph nodes lit up though. She is feeling quite tired and doesn't go out much anymore, no exercise but has a good apetite.

From reading your post I understand that you've just had a scan. Hope you have a good result Mr TW. Consider coming out of retirememt and taking up medicine for the next 30yrs? We have an 80yo general practitioner in our suburb and he plans to work for another 10 yrs.

All the best TW. You are truly a star!

C

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Your SIL may find this recent article of interest - Renal Cell Carcinome: A Reappraisal - it's from Urologic Nursing, earlier this year

http://www.suna.org/education/2014/article3204182190.pdf

Max Power's picture
Max Power
Posts: 60
Joined: Sep 2012

Re: "It's a case of the specialist coming to know absolutely everything about practically nothing!"

We were discussing this in our support group the other day. How we have again moved away from the holistic medicine approach to specialty medicine, with very little knowledge outside the specialty. (Probably due to the immense amount of info and updates required of the specialty.)

It turns out it is again up to us to find out how the dietician, pt, pain doctors, etc. can complement the oncology. Too bad the PCP doesn't fill this role.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Is that for Pattern Classification Program or Person Centred Planning?

angec's picture
angec
Posts: 664
Joined: Mar 2012

TW.. that means you went for you scan. They never told mom to stay away from anything at all. Fox must have an ever present beam surrounding him. No wonder we call him Mr. Sunshine!! :) I sent you a private email yesterday TW with some info on mom's latest scan.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

and I replied to it Angie.

adman's picture
adman
Posts: 268
Joined: Jul 2012

...isn't a bad thing on those long, windy, dark roads of Northern Great Britain :)
You are a warrior and a fighter, as well as, an inspiration to us all.

God Speed!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Bringing this thread forward for K and hubby, as promised. It will interest others too.

There's never been a better time to visit KIDNEY-ONC - I've not seen such euphoria over there before, a lot of it circling round the MDX/BMS with Votrient trial at JHH where one putt is doing so well and others on the same trial (cf. also Fox). I see the same (euphoria) is true here on CSN and I can't wait to read the posts on the two relevant threads - Fox's and Alice's - which I haven't got to yet. I bet it's going to contain some good news (which I can do with just now).

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Bringing this thread forward again, for Jan's benefit (see "Very New Here" thread).

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

Valuable info I keep at my fingertips. Don't know if anyone else utilizes this feature on CSN or not, but this thread is one of many I keep in my favorites file (upper right hand corner below thread title). That way it's quick reference. I also keep Fox's MDX 1106 thread as well as several others. That way when someone asks about joining ACOR in my day-to-day routine it's quick access. Know this won't help newbies initially but may be a time saver for the rest of us.

I also put posts in there that I want to research further; makes the favorites file my "to do" list too. Just thought I'd mention.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Bringing this thread forward for jj25 to help in getting to KIDNEY_ONC as fast as possible for help.

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