Portal › Forums › User Community Comments/Suggestions › Site Improvement Ideas
Tagged: replies, site improvements
| Author | Posts |
|---|---|
| Author | Posts |
| January 18, 2012 at 10:08 pm #1238819 | |
|
dbrock |
A place to discuss potential site enhancements and seek to develop consensus recommendations Operations Manager for GRACE. I came to GRACE after my best friend was diagnosed with lung cancer. She passed on July 31, 2010, after she showed all of us how to live. She lives on in her family and friends, and we all hold her memory close. |
| 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! 48-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, ALK negative. Started Tarceva (150mg), Feb 2011. |
| February 15, 2012 at 12:22 pm #1241747 | |
|
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 +++++++++++++++++++++++++ Howard (Jack) West, MD Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor. |
| 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. 48-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, ALK negative. Started Tarceva (150mg), Feb 2011. |
| 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 Husband dx ld sclc Oct 10 .Chemotherapy + concurrent radiation.Oesophogitis +pneumonitis but since had 2 clear scans PCI end Mar.Clear scan June.Relapsed Dec 11.2nd line chemo carbo /etop started Jan12 |
| 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.
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| 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” 57 year old female never smoker Dx Feb 2010 NSCLC RUL primary with met to rt femur; EGFR+ T790M neg; significant response to Tarceva Mar-Sept 2010; Significant response to Carboplatin/Alimta, then Alimta maintenance w/ progression Jun 2011; initial 20% tumor reduction in BIBW/Cetuximab clinical trial at MSKCC; 30% tumor growth in Jan 2012; Completed six week course of combination low dose carbo/taxol with daily radiation to primary tumor. Symptoms resolved. Scan scheduled for late May. |
| 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!. Husband 74 y, 04/11: dx Stage IV adenoc, LUL, RUL, mediastinum. Neg for KRAS, EGFR. 05/11+ : Carbo/alimta/avastin, two cycles. CT 06/11: majority of bilateral pulmonary nodules and mediastinal lymph nodes decreased in size. 07/11: 4th Carbo/alimta/avastin, well tolerated, ps excellent. On alimta/avastin maintenance. 02/12 Switched to alimta only maintenance due to dx of congestive heart failure. 3/12 Back on Alimta/avastin. |
| February 19, 2012 at 9:00 am #1241911 | |
|
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 +++++++++++++++++++++++++ Howard (Jack) West, MD Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor. |
| 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. Husband 74 y, 04/11: dx Stage IV adenoc, LUL, RUL, mediastinum. Neg for KRAS, EGFR. 05/11+ : Carbo/alimta/avastin, two cycles. CT 06/11: majority of bilateral pulmonary nodules and mediastinal lymph nodes decreased in size. 07/11: 4th Carbo/alimta/avastin, well tolerated, ps excellent. On alimta/avastin maintenance. 02/12 Switched to alimta only maintenance due to dx of congestive heart failure. 3/12 Back on Alimta/avastin. |
| 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! 57 year old female never smoker Dx Feb 2010 NSCLC RUL primary with met to rt femur; EGFR+ T790M neg; significant response to Tarceva Mar-Sept 2010; Significant response to Carboplatin/Alimta, then Alimta maintenance w/ progression Jun 2011; initial 20% tumor reduction in BIBW/Cetuximab clinical trial at MSKCC; 30% tumor growth in Jan 2012; Completed six week course of combination low dose carbo/taxol with daily radiation to primary tumor. Symptoms resolved. Scan scheduled for late May. |
| 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. 48-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, ALK negative. Started Tarceva (150mg), Feb 2011. |
| February 20, 2012 at 9:29 am #1241938 | |
|
catdander |
Am I late for the game or is this not the replies lists we all want? husband: 8/25/09 thoracotomy biop dx stage 3a squam nsclc pancoast tumor, 9/16-11/4/09 chemorads cis/etop, 10/30 c3 met stage 4, 11/9-20 rads to c3 & t6, 11/9-1/18/2010 carbo/navelbine, Feb-Nov tarceva. First progression 11/29/2010. gemzar started 12/14/2010… still on gemzer 2/2012. |
| 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 (now 45 yo), non-smoker, diagnosed stage 4 NSCLC 12/2009. |
| 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 (now 45 yo), non-smoker, diagnosed stage 4 NSCLC 12/2009. |
| February 20, 2012 at 10:49 am #1241944 | |
|
fortmyr |
I got it! (but God knows how I did it…) Myriam Sister (now 45 yo), non-smoker, diagnosed stage 4 NSCLC 12/2009. |
| February 20, 2012 at 11:31 am #1241945 | |
|
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 +++++++++++++++++++++++++ Howard (Jack) West, MD Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor. |
| 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. 48-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, ALK negative. Started Tarceva (150mg), Feb 2011. |
| 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. 57 year old female never smoker Dx Feb 2010 NSCLC RUL primary with met to rt femur; EGFR+ T790M neg; significant response to Tarceva Mar-Sept 2010; Significant response to Carboplatin/Alimta, then Alimta maintenance w/ progression Jun 2011; initial 20% tumor reduction in BIBW/Cetuximab clinical trial at MSKCC; 30% tumor growth in Jan 2012; Completed six week course of combination low dose carbo/taxol with daily radiation to primary tumor. Symptoms resolved. Scan scheduled for late May. |
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