What would YOU like to see on GRACE?

Portal Forums User Community Comments/Suggestions What would YOU like to see on GRACE?

This topic contains 8 replies, has 4 voices, and was last updated by  onthemark 2 months, 3 weeks ago.

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March 7, 2018 at 1:03 pm  #1294057    
Denise Brock
Denise Brock

Hello community!
We would like to see what you, our community, would like to see on GRACE.

In this new year, we are planning big things – we will have a booth at ASCO again, and of course will be doing round table videos post ASCO, we hope to to another Targeted Therapies Forum, we have other language videos in the making, and many more irons in the fire.

What information would YOU like to talk about on GRACE? Do you have questions for other patients and caregivers? Would you like to have a conversation about what it is like for you – symptoms, troubles, what has helped you through your journey?

Let us know here — we want to keep the conversations going!

Denise


Operations Director for GRACE. I came to GRACE after my best friend was diagnosed with lung cancer. She passed on July 31, 2010; she lives on in her family and friends, and in her beautiful daughter who looks more and more like her every day. If she were still here today, she would be blazing the advocacy trail. All part of her legacy. http://www.facebook.com/deniseabrock http://www.facebook.com/cancerGRACE

March 16, 2018 at 8:29 am  #1294089    

onthemark

Hi Denise,

There’s lots of great information here but I find it hard to locate because of the organization of the site. One thing that would help would be a list of all the threads in the forums listed in order of the most recent update, independent of what category it is in. I also find the google custom search usually takes me back to archived posts rather than anything recent. If you have the resources I would vote for a total remake of the site keeping all the information but making it easier to find.


10/2015 Chest xray found a nodule as part of a physical (no symptoms).
01/2016 Upper left lobe lingula preserving lobectomy stage 2b for 1.9 cm invasive adenocarcinoma with additional 2 mm AIS nodule found in pathology.
03-05/2016 Sixteen weeks of adjuvant cisplatin/vinorelbine.
07/2016 Durvalumab adjuvant clinical trial discontinued after 1st dose knocked out thyroid.
12/2016 Revised to stage 1b (due to VPI) after new guidelines for multifocal lepidic lung cancer.
07/2018 Next scan.

March 16, 2018 at 8:43 am  #1294090    
catdander forum moderator
catdander forum moderator

Hi On the mark. Thanks for the input. We are creating a new site and want to know what others really want in the site. Being able to sort search result by date is one of my wishes as well. You are able to access a list of forum posts by the date the last post was posted by clicking on “Recent Grace Forum Activity”.

Again thanks for the input it’s much appreciated.
Janine

March 16, 2018 at 10:48 am  #1294091    
Denise Brock
Denise Brock

Hi On The Mark —
As Janine said in her post, we are working on a new site which will be much better organized. The limitations to our abilities within the structure of the current site are frustrating and should get better when we move to the new platform. When we can launch it is – of course, like everything – based on our tight, nonprofit budget.

The link that Janine was referring to is here: http://cancergrace.org/recent-grace-site-forum-activity. There is a permanent link in the side bar that says ‘ Recent GRACE Forum Activity’ …It should bring up recent discussions within the forum.

Thanks for your feedback,
Denise


Operations Director for GRACE. I came to GRACE after my best friend was diagnosed with lung cancer. She passed on July 31, 2010; she lives on in her family and friends, and in her beautiful daughter who looks more and more like her every day. If she were still here today, she would be blazing the advocacy trail. All part of her legacy. http://www.facebook.com/deniseabrock http://www.facebook.com/cancerGRACE

March 16, 2018 at 12:37 pm  #1294099    

onthemark

Thanks for your answer. That helped. It seems that some of the expert information could be outdated. For instance, the most recent one on ground glass lesions is from 2013: http://cancergrace.org/lung/tag/ggo/
the same is true for ‘lepidic lung cancer’ http://cancergrace.org/lung/tag/lepidic-predominant-adenocarcinoma/

The common perception is that lung cancer research has advanced significantly in the last 5 years
and research has continued apace on multifocal ground glass lesions so one might think (rightly or wrongly) that the information here could be outdated.

In this particular case, my belief is that most of the relevant research has supported Dr. West’s algorithm for how to treat, or not treat, these lesions but there is no way to tell (as far as i can tell from my limited ability to search this site) that is the case.

It is also possible, just as a theoretical exercise, that some of the expert information is not only dated but could also have been invalidated by more recent research. I don’t know if there is an easy fix to this but one possibility is to add a disclaimer that not all pages are being actively curated for the most up to date information.

As an aside, it would be nice to be able to access all ‘tags’ to see what they are and then be able to choose amongst them.


10/2015 Chest xray found a nodule as part of a physical (no symptoms).
01/2016 Upper left lobe lingula preserving lobectomy stage 2b for 1.9 cm invasive adenocarcinoma with additional 2 mm AIS nodule found in pathology.
03-05/2016 Sixteen weeks of adjuvant cisplatin/vinorelbine.
07/2016 Durvalumab adjuvant clinical trial discontinued after 1st dose knocked out thyroid.
12/2016 Revised to stage 1b (due to VPI) after new guidelines for multifocal lepidic lung cancer.
07/2018 Next scan.

  • This reply was modified 4 months ago by  onthemark.
  • This reply was modified 4 months ago by  onthemark.
April 15, 2018 at 2:25 pm  #1294234    

onthemark

This might be too much work but it would be nice to have transcripts of the educational videos on the site. I recall this used to be the case and I would prefer to read rather than to listen.


10/2015 Chest xray found a nodule as part of a physical (no symptoms).
01/2016 Upper left lobe lingula preserving lobectomy stage 2b for 1.9 cm invasive adenocarcinoma with additional 2 mm AIS nodule found in pathology.
03-05/2016 Sixteen weeks of adjuvant cisplatin/vinorelbine.
07/2016 Durvalumab adjuvant clinical trial discontinued after 1st dose knocked out thyroid.
12/2016 Revised to stage 1b (due to VPI) after new guidelines for multifocal lepidic lung cancer.
07/2018 Next scan.

April 16, 2018 at 7:27 am  #1294238    
JimC Forum Moderator
JimC Forum Moderator

onthemark,

As far as transcripts of the videos, I agree completely. It’s much easier as a moderator to find relevant podcasts if my search includes the text of the video rather than just the title and summary. Perhaps when the new site is up the budget will allow us to return to providing transcripts.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

April 16, 2018 at 8:16 am  #1294240    

onthemark

Hi Jim,
I can imagine it would make your role here easier in terms of research if transcripts of audio were available. All that’s needed is a good audio recognition program and an automated script to run once the new website is up and an audio going to be posted. There’s probably already scripts for this and maybe even free software to do the transcription.

https://www.poynter.org/news/best-automatic-transcription-tools-journalists


10/2015 Chest xray found a nodule as part of a physical (no symptoms).
01/2016 Upper left lobe lingula preserving lobectomy stage 2b for 1.9 cm invasive adenocarcinoma with additional 2 mm AIS nodule found in pathology.
03-05/2016 Sixteen weeks of adjuvant cisplatin/vinorelbine.
07/2016 Durvalumab adjuvant clinical trial discontinued after 1st dose knocked out thyroid.
12/2016 Revised to stage 1b (due to VPI) after new guidelines for multifocal lepidic lung cancer.
07/2018 Next scan.

  • This reply was modified 3 months ago by  onthemark.
  • This reply was modified 3 months ago by  onthemark.
April 23, 2018 at 7:00 am  #1294291    

onthemark

It would be nice every now and then to see forum posts by Doctors like it was years ago. Not necessarily as often but at least every now and then would have an effect on rebuilding a community of grace forum participants.

I’d also like to see some of the old threads on the forums updated with new information every now and then.

For instance I ran across one thread with a title referring to chemotherapy only helping 20% of patients. Of course now with immunotherapy added in the numbers are going to be different and how we quantify ‘helping patients’ is also a quantitative but nuanced subject. There is so much misinformation out there about cancer on the web after all, it is important to have reliable and up to date information that answers questions that people actually raised.


10/2015 Chest xray found a nodule as part of a physical (no symptoms).
01/2016 Upper left lobe lingula preserving lobectomy stage 2b for 1.9 cm invasive adenocarcinoma with additional 2 mm AIS nodule found in pathology.
03-05/2016 Sixteen weeks of adjuvant cisplatin/vinorelbine.
07/2016 Durvalumab adjuvant clinical trial discontinued after 1st dose knocked out thyroid.
12/2016 Revised to stage 1b (due to VPI) after new guidelines for multifocal lepidic lung cancer.
07/2018 Next scan.

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