Site Improvement Ideas

Portal Forums User Community Comments/Suggestions Site Improvement Ideas

This topic contains 34 replies, has 11 voices, and was last updated by Dr West Dr West 5 years, 9 months ago.

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January 18, 2012 at 10:08 pm  #1238819    
Denise Brock
Denise Brock

A place to discuss potential site enhancements and seek to develop consensus recommendations

February 13, 2012 at 6:55 pm  #1241679    

TedJ

I left my first post tonight on the new board. I did not locate a spot for a “Spell Checker”.

For us old guys this is diffiult, you will never know what we may wrie accidentely!

Ted

February 15, 2012 at 10:52 am  #1241740    

certain spring

Nicely put, TedJ!
I would also put in a plea for a “preview” and a “modify” button. On a site which deals with sensitive subjects, I think it’s really important to be able to check posts before going public, and change them afterwards.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

February 15, 2012 at 12:22 pm  #1241747    
Dr West
Dr West

All good points. We’ll look for these functions as add-ons, and if not available, I suspect many will become available quite soon. They’re all good requests, and if they aren’t available now, it’s probably only because the forum software is quite young. But people are building additional features as plug-ins all the time.

I know that I can edit my posts after I submit, but that may be a feature just for people with admin status. Can others not edit their own posts after they’ve submitted? It’s not as nice as a preview function, but if you can edit your posts after the fact, that would do the job. If you can’t do this, it may be possible to change that setting for people.

-Dr. West

February 15, 2012 at 1:33 pm  #1241753    

certain spring

The version I’ve got is just like the old “Comments”, where you couldn’t preview or edit. However I am also getting a message that my browser is out of date (much like the rest of me), so perhaps people with newer browsers have these functions enabled.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

February 15, 2012 at 2:51 pm  #1241763    

Christineleeds

Please can we have all the recent post down the side again.I still can’t seem to get a sense of what is happening anymore and I miss feeling like a family
Regards
Christine


Husband Philip dx 10/10 ltd SCLC.Cisplatin/epotiside with twice daily radiation 1/11 PCI 3/11.Pneumonitis .Progression 11/11 carbo/epotiside 1/12 Radiation 6/12.Very bad chest infection following rad which could not be controlled and SIADH.Died 8/12.Was very active and quite well for most of treatment up till the last week.

February 15, 2012 at 3:23 pm  #1241764    

laya d.

Me too!


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.

  • This reply was modified 5 years, 9 months ago by  laya d..
  • This reply was modified 5 years, 9 months ago by  laya d..
February 15, 2012 at 4:55 pm  #1241770    

blue skies

I have only just now been able to log on to the site after getting many different error messages and suggestions. What finally worked was resetting my password, but it took me several tries at doing that successfully.

I would like to request that the “Recent General Forum Topics” hot links in the far right pane be moved up as high on the page as possible, but certainly above the “connect with GRACE” links to Twitter and Facebook, etc. as well as the two boxes that function as hot links to “GRACEcasts) and “Subscriibe to GRACEnotes”

February 19, 2012 at 6:03 am  #1241910    

follansbee

Thank you for the recent movement of topics. I’m sure that additional changes are being made but would like to add a few thoughts before everything is stabilized. I am still having trouble finding recent postings and knowing where to look for what I am interested in. The Cancer Treatment/Symptom Management section seems like a catchall, which is fine, but it also includes subtopics that are specific to lung cancer, which might be better included in the Lung Cancer section. And sometimes members post general topics in specific sections, for example insomnia in the SCLC subsection of the Lung Cancer section. Also, Recent Posts on a specific section only appear when you are in that section, so I have to go through each section in order to not miss anything. And PLEASE bring back Spellcheck, I’m lost without it!.

February 19, 2012 at 9:00 am  #1241911    
Dr West
Dr West

Blue skies,

Your points are well taken, and that I haven’t responded only meant that I’ve been thinking about your comments. We would very much like to reach more people via social media, so highlighting the easy ways that people can follow GRACE content and share it is going to be a priority for us. However, I also know that you and many others desperately want an easy way to glimpse at what new forum content has been added to the site. Literally the next high priority project that Webmaster Mark is undertaking is to find a plug-in or make a solution of creating a page where all of the forum content across all of the different forum areas can either be aggregated together, as in the prior forum, or be listed with all of the feeds for the different forums available on one page. We can make the link to that function be readily visible across the site.

Please be assured that this is a high priority for us.

Follansbee,

Can you give some examples of some of those subtopics that you would say are specific to lung cancer? I would actually say that things like shortness of breath, cough, pleural effusions, etc., are actually common features of many cancers, since the lungs are a common place for other cancers to spread. Also, the inclusion of cancer drugs that are readily used for lung cancer are not specific to lung cancer, so things like how to manage side effects and dosing issues around many of these is actually relevant across many cancers.

As for a spellchecker function, it’s on our wish list. I and the other folks working on GRACE are truly acutely aware of the bare-bones forum styling, which is actually relatively “tricked out” from the efforts of Webmaster Mark compared with what the standard version is. I am truly sorry that in several ways it’s a downgrade compared with having a forum that was just a forum. But having one that can be integrated way, way better with the post site of the site, without things breaking constantly, required some compromises. This was a difficult switch to go through in order to get to a point where the software is far more supported and stable and tweakable. Moreover, I absolutely expect that there will be more and more features for the forum becoming available in the next few months, from a combination of things Mark will work to build and other plug-ins that the open-source community will help to provide, because we aren’t the only people who want to see this forum software become maximally useful,

-Dr. West

February 19, 2012 at 9:50 am  #1241913    

follansbee

Dr West, thank you for your reply and for all the time, effort and expertise that you and the webmaster have provided to making the upgrade work for everyone. My frustration with the upgrade has been trying to find things that are relevant to my husband’s treatments and symptoms because recently posted information that may be useful is scattered through several sections of the forum. I think that the priority that you described above, “creating a page where all of the forum content across all of the different forum areas can either be aggregated together, as in the prior forum, or be listed with all of the feeds for the different forums available on one page” will help significantly.

February 20, 2012 at 2:31 am  #1241935    

blue skies

Thank you Dr. West. I have to admit that I am working very hard to get the hang of the new site format, but it is very difficult. I got an email notification that you had replied but it has taken a long time for me to find your reply on the site so I can reply again. The navigation is not as intuitive as the previous site.

Links to social media: I understand the interest in leveraging the social media networks, but GRACE is using an enormous amount of real estate to display these hot links. Most web sites shrink these down and display them below or around their target content. I think better placement is possible here that will still give site users easier access to the content they want and the ability to find and access the social media links.

I also think that you might want to adopt a kind of “gateway” or portal approach in lieu of the drop down menues to serve the various cancer types that GRACE is seeking to serve. The top toolbar would show “tabs” listingthe various user groups (lung, breast, pancreatic, etc). Users would click on those and go to a page that might look more like the old GRACE site…focused on their cancer type. There could also be a tab for General cancer info that could be accessed from the main page or from any of the specialty pages. The forums for information on radiation, faculty essays (for want of a better word) and other generic info of interest accross the various cancer communities could also be linked to those “gateway” or portal pages. This could reduce the need to have to start with a drop down menu just to get started.

And if I could have one vote, I’d put the member directory and private message function at the very top of the list of priorities. I really benefit from the public posts and appreciate what people share there, but I have found that there are times when (as a former…and sometime still…lurker), I want to follow up with someone on a more personal level that feels too intimate for a public post.

As difficult as this transition is for me, I can only imagine what it is like behind the scenes for you and the webmasters. Thanks so very much for trying to make this site both user friendly and maintainable/reliable. It’s a heavy lift!

February 20, 2012 at 3:18 am  #1241936    

certain spring

May I endorse everything Blue Skies has said? I actually started writing a post suggesting a portal system, but scrapped it because I know that Dr West is keen not to “segregate” the different types of cancer. But to be honest I think this sensitivity conflates two phenomena: 1) how different cancers are perceived in society (and by doctors); and the inequities that exist in fund-raising and research; 2) how patients and their caregivers think. If I had pancreatic cancer, I don’t think I would feel put out or excluded that I wasn’t in the same section as the lung cancer people – on the contrary, I suspect I would be delighted that there was a dedicated section where I could get information specific to my cancer and ask questions of experts in the field. This needn’t obviate the idea of a central pool of posts/essays that are of general interest, as Blue Skies points out.
I too appreciate everyone’s hard work on this, and realise it is a major undertaking involving many hours of teamwork and a great deal of thought. But my particular worry is that along the way we will lose some people who might be ill or in distress, or who just don’t have the time to hunt around for things.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

February 20, 2012 at 9:29 am  #1241938    
catdander forum moderator
catdander forum moderator

Am I late for the game or is this not the replies lists we all want?

http://cancergrace.org/wp-admin/edit.php?post_type=reply&all_posts=1

It’s on the wordpress page I accessed by clicking the “Profile” tab on the bar across the top of each page. On the left colmn there is a tab that’s labeled “replies”.

February 20, 2012 at 10:16 am  #1241942    

fortmyr

I changed my signature slightly yesterday but by doing so I lost the formatting (my signature now shows in a sole paragraph vs. before, where I had many lines each starting with the date that my sister had received treatment). I was wondering if there is something that I could do to re-gain my old format? If not, don’t worry about it. That’s no big deal.

Thank you for your help,

Myriam


Sister (46 yo), non-smoker, diagnosed stage 4 NSCLC 12/2009 12/09-03/10: 5 cycles cisplatin+navelbine (stopped because of neuropathy) 04/10-06/11:Tarceva (EGFR, exon 21 mutation) 02/11: 15Xrad. to right lung (bronchi blocked) 04/11: MRI shows 10 brain mets. 05/11: 5 sessions of WBRT (20 Gy) 06/11-12/11: maintenance Alimta 11/11 and 01/12: radiosurgery (15 Gy to 2+3 brain mets) 12/11-03/12: re-Tarceva. 04/12: Afatinib (convulsions) 08/12: adding Cetuximab to Afatinib. Left us October 31, 2012.

February 20, 2012 at 10:46 am  #1241943    

fortmyr

Well, that is strange. I played with my signature again and now it partially works (i.e. I’m close to re-gaining my old format…). I’ll make one last try ton see if I can definitively get my format back,

Myriam


Sister (46 yo), non-smoker, diagnosed stage 4 NSCLC 12/2009 12/09-03/10: 5 cycles cisplatin+navelbine (stopped because of neuropathy) 04/10-06/11:Tarceva (EGFR, exon 21 mutation) 02/11: 15Xrad. to right lung (bronchi blocked) 04/11: MRI shows 10 brain mets. 05/11: 5 sessions of WBRT (20 Gy) 06/11-12/11: maintenance Alimta 11/11 and 01/12: radiosurgery (15 Gy to 2+3 brain mets) 12/11-03/12: re-Tarceva. 04/12: Afatinib (convulsions) 08/12: adding Cetuximab to Afatinib. Left us October 31, 2012.

February 20, 2012 at 10:49 am  #1241944    

fortmyr

I got it! (but God knows how I did it…)

Myriam


Sister (46 yo), non-smoker, diagnosed stage 4 NSCLC 12/2009 12/09-03/10: 5 cycles cisplatin+navelbine (stopped because of neuropathy) 04/10-06/11:Tarceva (EGFR, exon 21 mutation) 02/11: 15Xrad. to right lung (bronchi blocked) 04/11: MRI shows 10 brain mets. 05/11: 5 sessions of WBRT (20 Gy) 06/11-12/11: maintenance Alimta 11/11 and 01/12: radiosurgery (15 Gy to 2+3 brain mets) 12/11-03/12: re-Tarceva. 04/12: Afatinib (convulsions) 08/12: adding Cetuximab to Afatinib. Left us October 31, 2012.

February 20, 2012 at 11:31 am  #1241945    
Dr West
Dr West

I had done a rather long reply to several good suggestions here, only to have my internet connection crap out before I could submit it (I’m traveling).

I think that we can make it feel more cancer-subtype specific while still keeping the same structure. I’ll work with Webmaster Mark and Denise on this.

-Dr. West

February 20, 2012 at 3:37 pm  #1241950    

certain spring

catdander, I see what you mean, except that the posts are listed by topic, rather than by time of posting.
Have a nice holiday Dr West. I think you might deserve it!


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

February 22, 2012 at 2:19 am  #1242047    

blue skies

Dr. West, Is there an email address where I could contact you with a suggestion regarding the website? You could email me at your convenience at amlarl@verizon.net.

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