| Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 |
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Mar 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | OP OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 64 | I will be posting the Vitamix OCF badge code on here tomorrow, I hope that anyone that has a blog will add it and our Amazon badge to help OCF, to their blogs or web sites. Some of you are on "peggy" web sites besides here and spreading the word around that they can do good with their purchase would be really great help.
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: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | Excellent job old warrior!!!Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Yay, great news!!!! I have been waiting to purchase a VitaMix and I am so glad I did. Love this idea of having them at the Walks, and making them available to OC patients for whom the cost is prohibitive.
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 |
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | 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 exciting partnership with Vitamix! Thank you for all your hard work Brian! The OCF forum members dont always know how much hard work you do behind the scenes to help OC patients, caregivers and with research. There arent many who would work as hard as you do (many 14 hour days) without ever taking a paycheck or expecting anyone to thank them. Thank you for your dedication to all things OC! How to make it fair for both medically needy while addressing income is not easy. I have a suggestion about how to screen lower income patients. Many OC patients are no longer able to work and are on SS disability years before their retirement time. Maybe anyone who receives SS of any type or public assistance would automatically qualify. For those who are not on SS, how about a percentage of the Federal Poverty Level Guidelines? I retired from old Ma Bell where there were programs to help lower income people pay their basic monthly phone bill if they were under certain monthly income levels. This should be something that could easily work in qualifying OC patients for their eligibility. To ensure this is available to help the most needy, I suggest the maximum income level of 200% (maybe even 253% so its not too stringent and would not give to medically needy) of the Federal Poverty Guideline for 2014. But at the same time, the lower the income the higher on the list the person would be placed. Federal Poverty Guidelines for 2014 As far as making certain someone is an OC patient, that would be the easy part. We all go see so many doctors any one of those specialists can simply write a brief note saying something like "_____ has been under my care for oral cancer since ____". This way its not too personal but it would screen out non OC patients from attempting to take advantage of the program. Not all OC patients need to use something like the Vitamix on a regular basis, some are lucky enough to return to eating normally after their treatments. So maybe a note stating medical necessity of a blended, pureed diet would be enough to qualify someone? Does anyone else have any input as to how best to address the income and diagnosis obstacles? 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: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | We bought a Vitamix during my treatment. They have a discount program in place for head and neck patients (DonFoo turned me onto this). I was able to purchase a refurbished model at about 50% (roughly $200) off fully guaranteed with a doctor's note. It's not just a blender, it's a "machine"... amazing!
Highly recommended!
Positive thoughts and prayers
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | OP OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 64 | I have been informed by Vitamix that that program for medical needs people has been discontinued. They are restructuring the program. If I thought someone who OCF desires to serve could get it that way I would have said so, and stayed out of the issue (which is still being negotiated since we wish to give some away). IF Vitamix is going to set us up as something other than an affiliate in the near future, (what I have been told now that we are registered with them) OCF will have a special needs program with prices off retail, as that is the market we desire to serve. This is also about making a little money selling a few machines for OCF, but it is a bigger idea. If I had to go out and compete head to head with the likes of Amazon, I would not have even looked into this. But that was never our desire. We need to replace their medical needs program, and we need to give some away at no charge to those who can prove both medical need and financial hardship.
Last edited by Brian Hill; 10-23-2014 10:19 AM.
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: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | OP OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 64 | So I just got off the phone with Vitamix. It is a HUGE company with lots of players, each who have a say in how a new idea gets set up, and OCF is definitely a new idea. They have a small program now in which they give a very limited number of units away for free. Qualifying for one of those refurbished units is hard, and it encompasses many other issues outside of oral cancer, all competing for the few machines that they have. That would be people that have strokes and other diseases that force people onto PEG tubes. The discounted units for people with a medical needs letter is definitely gone, and we (along with some other non profits) would be their replacement ideas for it.
We will have this idea up and running according to them before the Xmas season, and will begin our give away program some time in December. We will also have a retail program and a medical needs program. But they have to sign off on everything that we do, and that is going to take a little bit more time.
So there are no discounted units from Vitramix any longer for medical needs. If you were lucky enough to get in this program months ago, that was a great deal. But it is defiantly not part of their operation today.
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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | The Vitamix program had two programs: the large discount option that is now discontinued; the other was and appears to remain intact is one that offered machines to very financially distressed patients. It required proof of Medicaid or SSI, along those lines and there was no certainty of receiving one; one applied, not ordered one.
For those who find the current Vitamix programs still too costly, check if Blentech still has a similar program as the discontinued one.
One other thought for OCF is has there been thought given to a loaner program as an alternative to giving units. Since most of us need liquified food for a limited time, maybe it would benefit more folks to borrow one for a few months and let OCF offer to others during their time of need.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | |
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