| 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: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | 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. | | |
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