Introducing … (drum roll) .. the NEW GRACE (2012)

Portal Forums User Community Comments/Suggestions Introducing … (drum roll) .. the NEW GRACE (2012)

This topic contains 33 replies, has 13 voices, and was last updated by  laya d. 5 years, 9 months ago.

Viewing 14 posts - 21 through 34 (of 34 total)
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February 12, 2012 at 1:45 pm  #1241514    

laya d.

Yay!!!! That was a favirote feature of mine on the last site. . .along with always being able to tell which one of my friends was Online when I was Online (which I also don’t see here).

I’m working VERY VERY VERY hard at being patient. . .which as you all know is quite challenging for me ;O). . .

Laya

P.S. Thank you Mark, Denise, Dr. West and anyone else who is dealing with technical issues + my whinning. . .


1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken.

February 12, 2012 at 2:08 pm  #1241515    

DianeW

Sorry – still no signature box. Now however it’s also telling me that my browser is out of date, but I need Windows Vista or 7 to upgrade and I have Windows XP. Is that going to be a problem? Sorry about this.
Dianew


March 1998 – Dx 2a NSCLC (squamous); Left lung removed – no further treatment;
Nov 2008 – Dx 3b NSCLC (squamous); Concurrent chemo/radiation – Cisplatin/Etoposide, but changed to Carbo/Taxol. April 2009 – scan stable. June 2008 – entered Lucanix trial; April 2011 completed drug portion of trial; follow-up scan Oct 2011 – stable; scan April 2012 – stable.

February 12, 2012 at 2:35 pm  #1241516    
Dr West
Dr West

DianeW,

Please click on your name in GREEN below the avatar (or where your avatar would/should be), and then next to your name on the next page is where it says “Edit” in grey. Below that is a spot for biographical data and, below that box (you need to scroll down) is a box for a signature. We need to get formatting there, so it’ll get better.

But if you’re following those instructions, you shouldn’t see anything telling you that your browser is out of date. If this persists, we can always work on doing a screen share, but right now we’re trying to fix some site-wide things before we get too focused on individual signatures. Once we get through the big stuff, we can tackle the more individual technical problems.

-Dr. West

February 13, 2012 at 8:08 am  #1241627    

laya d.

A couple of more thing to add to the list. . .

(1) Is there a way to see if someone is a “newbie” or not – – so that when responding we can welcome them to GRACE? The converse is accidentally welcoming someone whose been around, but maybe hasn’t posted in a while (not a very warm and fuzzy feeling to be welcomed as a new user when you’ve been around for 2 years). . .

(2) Spell check?

(3) Like we had at the other site, a function that allows a person to see (or be warned) when someone else has beat them to posting a response (this is especially useful if a doctor has responded while one is drafting a response – – like it happened to me this morning :O) ). . .

Thank you,
Laya


1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken.

February 13, 2012 at 8:35 am  #1241636    

double trouble

What Laya said, plus will we be able to see how many posts a person has made. Certain Spring was about to make “The Order of the Cube!”
Debra

February 13, 2012 at 8:44 am  #1241638    
Dr West
Dr West

I know…I miss those things too.

Webmaster Mark is going to be doing what he can to find any additional features we can install, and he may well be able to create some himself by modifying some of the features present for other aspects of WordPress.

For now, however, these will have to remain a wish list. As I said, this is a very new discussion forum software that will only be gaining features. I apologize for the compromises we have forced people to make already, but I know we will get things better than this, and having subject-specific forums and plug-ins for the blogs that actually work correctly, as well as a useful search function were all pretty necessary changes.

Please bear with us as we work to add functionality.

-Dr. West

February 13, 2012 at 10:30 am  #1241646    

Apra

The new Grace is good I think, but we are out of our comfort zone. I really don’t know how to post anymore! But I will patiently learn. Thanks for trying to make things better. Yes there were some things on the old site which needed to be smoother and easier, and addi g the google search is very smart.

Regards

Apra

(don’t know how to add my signature line, but will try to follow the instruction above, though my name or aviator does not appear anywhere, so don’t know where to start, but will fiddle around)


Husband 62 NSCLC Adenocarcinoma stage IV. Dx 5/11. Carbo/Taxol 3 rds. Carbo/alimta 6 rds. Alimta maintenance 8th rnd over in August 2012. Pet Ct 8/12 showed progression, with mild ascites. Start Tarceva Sept. 2012 100mg and then 150 mg. Radiation to spine, femur in 6/11. Radiation to bilateral lower end femur 10/11. June 2012 RT left femur, left iliac and sternum.

February 13, 2012 at 11:32 am  #1241649    

laya d.

No apologies necessary, Dr. West. The site is great. We’ll all get used to it. We will just add to our “wish” list as we move along. . .and the fabulous and tireless behind the scenes GRACE gurus can get to it when they get to it. . .

Thanks everyone. . .

Laya


1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken.

February 13, 2012 at 2:06 pm  #1241665    
Denise Brock
Denise Brock

Thank You Double Trouble!! and thanks for all your tips …

February 13, 2012 at 8:32 pm  #1241682    
Dr West
Dr West

Every time I think we’ve had a breakthrough, it seems there is a new ghost in the machine — avatars are good, but signatures flaking out, or the opposite.

I’m doing what I can, which is praying to the tech gods.

-Dr. West

February 17, 2012 at 8:25 pm  #1241860    

erica

Hi double trouble, I haven’t been on the site in a long time, at least 5 months and I can’t believe how much it has changed. I am having trouble figuring out how to communicate with you guys again. Im lost and confused, am I crazy or is this not user friendly. AHAHAHAHAHA so frustrating, any insight would help.

I want to know how everyone is doing on there treatmen! My MIL is still struggling with her chemo. The cancer is being controlled and working, but at the same time its destroying her. She has no quality of life on it so we decided to stop the chemo. I hope your treatment is still kickin butt!

Thanks
Erica

February 18, 2012 at 7:53 am  #1241871    
catdander forum moderator
catdander forum moderator

Hi Erica, it’s so good to here from you. I’m sorry you MIL hasn’t fared well on the qol with chemo. It is such a struggle to know where those lines are. I hope she finds relief without chemo.
We have a brand new site that is much safer right out of the box but the crew (Dr. West, Mark, Denise…)are working overtime making the software as user friendly as ever. As Dr. West asked, have faith that we will be running smoothly soon.
The software is newish and new apps are being made to support our needs. It’s hard living on the cutting edge you know. ; )
Myriam started a post (I’ve pasted a link to it below) asking just the question you want answered; how is everyone. I just found it myself and plan on finishing the read with my cooffee then postiing. See you there.
Janine

http://cancergrace.org/lung/topic/updating-each-other-in-a-common-thread-to-kick-start-the-new-grace/

February 18, 2012 at 2:46 pm  #1241876    
Dr West
Dr West

I’m sorry for your MIL’s difficulties, and for the challenges of figuring out a new site. We’re working to make it easier, and I think that with these changes and with more time to get used to it, it will get easier.

-Dr. West

February 18, 2012 at 6:58 pm  #1241878    

laya d.

Hi Erica:

I’m so sorry to read that your MIL is having a hard time with her treatment, but HALLELUJA that the cancer is controlled!!!

Please please please continue to keep us posted.

Laya


1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken.

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