| Joined: Jan 2006 Posts: 43 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2006 Posts: 43 | Hello all, The first mobile app for the OCF is currently underway and we would like to ask for your input to make sure that it has all of the tools and support that a patient and caregiver needs. Below you will find a brief description of the current functions of the app. Please take a look at the current list and then let us know if there are other features or tools that you would like to see. There may not be room for all suggestions in this first version, but they will all be filed away for future versions.
I hope that you find this mobile app useful, I look forward to hearing your ideas.
This app will have many of the features of the OCF website that survivors and caregivers currently use, but in mobile format. This app will be tied directly to the OCF website and users will be able to log in or new users will be able to make an account. Instead of trying to emulate every piece of the OCF website this app will be geared more towards tools, info, and support for patients, caregivers, and survivors.
What the app will include- from OCF website--
Survivor Patient Forum- This will allow you to access the patient/survivor forum from the mobile app.
Events Oral Cancer News Diagnosis Treatment
There will also be a several tools for patients and caregivers as well.
Medications tracker - This will allow you to enter in all medications that the patient is taking and set alarms to notify you of upcoming doses. This information will be logged for easy reference for appts.
Nutrition and Water Intake Tracker- allows users to input descriptions, volumes, times and nutritional information. This information will be logged for easy tracking of nutritional information.
Talk for Me - specifically designed for the Oral cancer patient that will meet the speaking needs immediately after surgery and during rough phases of treatment. It will allow users to select simple phrases or choose their current pain level from the standard pain scale. These messages can either be played aloud or sent to their caregiver, via text message.
Notes- Users can quickly write down questions for their treatment team or to remember an important note.
Contacts- A place to store contact information related to your care
We appreciate all your support and look forward to hearing all your great ideas. I also want to give a special thanks to Brian, Chester, Jaime and Eric who are all working hard to help bring this great tool to you soon!
Erik Bradstreet
Type and stage of cancer:1st - SCC left base of oral tongue non HPV, T3N1M0 hemi-glossectomy 60 node rem, radX35 carboplatnum &Erbitux X6, Peg tube, lost 55 lbs 2nd - SCC right base oral tongue, surgery, Cisplatin & Erbitux x 16 3rd - SCC right base oral tongue, surgery, hope. | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Will it have a way to be able to use the search function? How about the PM feature? ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jan 2006 Posts: 43 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2006 Posts: 43 | Thank you Christine. The goal is to have as much functionality that you currently use. I appreciate your input.
Erik
Type and stage of cancer:1st - SCC left base of oral tongue non HPV, T3N1M0 hemi-glossectomy 60 node rem, radX35 carboplatnum &Erbitux X6, Peg tube, lost 55 lbs 2nd - SCC right base oral tongue, surgery, Cisplatin & Erbitux x 16 3rd - SCC right base oral tongue, surgery, hope. | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Will it have a link to my picture?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jan 2006 Posts: 43 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2006 Posts: 43 | Hadn't thought of that, but thanks for the suggestion,
Type and stage of cancer:1st - SCC left base of oral tongue non HPV, T3N1M0 hemi-glossectomy 60 node rem, radX35 carboplatnum &Erbitux X6, Peg tube, lost 55 lbs 2nd - SCC right base oral tongue, surgery, Cisplatin & Erbitux x 16 3rd - SCC right base oral tongue, surgery, hope. | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Yes David we will showcase you there, but I haven't decided what we will say under your picture� I think EricS will have some interesting suggestions.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | We are going more for daily functionality that you might use on a phone or pad. Daily nutrition /calorie intake tracker, daily meds tracker, contact list for all those you need to connect with while in treatment from doctors to insurance people, a calendar function for all your treatment scan and follow up appointments.
This app is not going to be designed as a substitute for the web site, nor a duplication of it. It is to help patients with utilities that will keep them on track during a difficult journey. This is more of a group of tools vs. an interface to information on the site.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | This is really, really awesome � having all that important info as close as your phone when going to appointments or anyplace else that requires updated info. How about a link to:
1) OCF Project: �Oral Cancer - - Getting through it Together� Is that still around? I have it on my iPhone home screen� (good reading for anyone having to wait in the Rad Waiting room or anyplace else). 2) OCF Store 3) Amazon link thru OCF 4) List of upcoming Awareness events with calendar 5) Pics of founder and administrators
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: May 2012 Posts: 114 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 114 | I love this idea! I wish this was around when my mom was going through surgery and treatments. It sounds like a great way to keep all your information stored in one easy to access place!
Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12 | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | This is an EXCELLENT idea!!! I need to upgrade my old clunker of a cell phone and get something hi-tech so I can do 'aps'. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | I can't wait! I don't have a cell with apps, mine is just a trac phone, but I have an iPad that I use so much more than my computer. It will be great if OCF has an app.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Sep 2009 Posts: 177 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2009 Posts: 177 | will it be for multiple platforms such as the anDroid?
Wendy 46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | the first version will be for the iOS. when that is in place we will issue an android version which will happen faster given the ground work already done for the Apple platform.
As you put up your suggestions, remember that good aps are TOOLS, or utilities. They are trimmed down to the meat of getting something you need to accomplish done, or tracking something.
Last edited by Brian Hill; 07-27-2012 03:01 PM.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Excellent idea. I could have really used this the 12 days I was in the hospital after the recurrence. Brian's point on practicality bears repeating. On my IPad, the best apps are those that are lean not overbloated. Apple's app store is the gold standard so starting with iOS makes sense IMO. (bias disclosure: I have a first generation Ipad) . My suggestion is to have a checklist for patients that covers some basics that get overlooked even though recommended such as pre TX thryoid level blood test as well as the basics flouride trays, dental check, PEG discussion, weight parameters, pain medications etc. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | This will be such a great help for people, thank you all who have a hand in getting this going!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0 Elizabeth, 33, mother of 3 girls (4,7, &8yrs old) 3 rds of chemo(Carbo/Taxol) Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube. 30 rds of rads with weekly cisplatin SCANS ALL CLEAR! OCF Regional Coordinator of San Antonio Walk
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Great idea...anything to replace that clunker of a notebook I took everywhere during Bill's diagnosis, treatment and followup checks. Just having dates, doses, and contact information in one place would be great.
I will await the android version with patience.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | The PEG discussion as Charm suggests would have been so helpful when my son was first diagnosed. All his doctors said was that "he might have to use one" which horrified us without even knowing the pros and cons which were never presented to us by the cancer team.
As far as "tools", I wonder if there would be room for a list of financial aid suggestions. I remember seeing Christine's link to several good suggestions for those struggling financially. Just knowing where to go for help would relieve a lot of anxiety for survivors and CGs. There was a drug company that forgave my son's bill because of his financial need. This app is going to be such a wonderful thing for the survivors and their CGs!
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Jan 2006 Posts: 43 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2006 Posts: 43 | Thanks, Ann Marie. We really do want this to be THE tool for patients and caregivers, including information like financial or a "what to do when diagnosed" type of checklist. The reason to go iOS first is also that it gives us a chance to perfect the app on one platform without having to fund multiple changes to both iOS and Droid at the same time. While a slight bummer for Android users for a short time, they will most likely be getting a more full featured app.
Thanks for all the ideas, keep them coming. Erik
Last edited by Brian Hill; 08-09-2012 06:52 PM.
Type and stage of cancer:1st - SCC left base of oral tongue non HPV, T3N1M0 hemi-glossectomy 60 node rem, radX35 carboplatnum &Erbitux X6, Peg tube, lost 55 lbs 2nd - SCC right base oral tongue, surgery, Cisplatin & Erbitux x 16 3rd - SCC right base oral tongue, surgery, hope. | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | I asked my son for any suggestions he might have and he said - <<I think it would be good if the contacts section had something specific for holding emergency treatment info and insurance information.>>
I remember a particularly disturbing episode, when I thought Paul would be ok for the nite and went home to sleep. During the night, he had a bad reaction to some meds and his throat swelled up to the point where he could not breathe. He managed to call my daughter (a police officer) who recognized his choking sounds and came and took him to the emergency room. They gave him Benedryl and swelling went down. I wish we had been more aware of what to do for reactions like this.
Great big "thank you" to all of you working on this.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Jan 2006 Posts: 43 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2006 Posts: 43 | Hey everyone, I wanted to give an update on the OCF mobile app. Things are moving along well and hopefully I will have some sneak peak screen shots to wet your appetite until the apps release. Please continue to forward us your comments and suggestions so that we have plenty of ideas for future versions of the app. Thanks, Erik
Type and stage of cancer:1st - SCC left base of oral tongue non HPV, T3N1M0 hemi-glossectomy 60 node rem, radX35 carboplatnum &Erbitux X6, Peg tube, lost 55 lbs 2nd - SCC right base oral tongue, surgery, Cisplatin & Erbitux x 16 3rd - SCC right base oral tongue, surgery, hope. | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Thanks for the update. . . I was just wondering how it was coming along. Glad to hear we'll be getting some sneak peaks.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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