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Joined: Jul 2012
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PaulB Offline OP
Patient Advocate (old timer, 2000 posts)
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Thank you for responding Lisa. I was going to make a post in another section specifically about NeutraSal being I found it helpful, convienant, and read a few positive studies about its use.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
The post about the product has been deleted.... this was nothing more than an attempt to sell this item to our members which is strictly against OCF rules.


Christine
SCC 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 smile
Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
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Joined: Jan 2013
Posts: 1,291
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I have a big problem with posts just going AWOL especially if the post was offering information about something that helps with side effects of rads.

Can't you allow a single inline post? Maybe ask the OP to revise so it is less "selling" and more an info post or press release sort of thing.

Do whatever but don't just delete something that might actually help members suffer the ravages of rad treatment.

Don


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
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
The post in question was written by a member who joined OCF for the sole purpose of promoting their product. The post contained no beneficial info and was removed.

As per OCF board rules, commercial posting is strictly prohibited. The rules are available at the bottom right of the page.


Christine
SCC 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 smile
Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
Likes: 1
Maybe the rules should be reviewed so members can at least be aware of new therapies and products. A cautionary note can be added what state of trial or testing or vetting by a credible entity should be included.

Just wiping the entire mention just seems like it servers the community less than the mention of it along with the caution message.

don


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
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Don,

You bring up an interesting point. How do we, as a community, offer things like this? I, for one, have found many opportunities for products that have been found to be successful for me and I get special deals or incentives but have yet had anyone here even make an attempt to take advantage. I know this because I even post promo codes at times to track and check back with suppliers to discover no one moves forward.

There has to be some more defined process that takes into consideration the rules of OCF, the advantages to members of the forum and yet still provides a potential benefit to survivors. I realize it is a fine line but Brian cannot be the sole person to try everything and make recommendations. For one, he doesn't have the time but, more importantly, the products in question may work for only a small group similar to medicines.

As a user of the forums, I have not had any of my recommendations deleted in 10 1/2 years. I fully understand having controls in place to prevent us from being advertisement driven and a willing pool of consumers for any company to just take advantage of.

We are a bunch of pretty intelligent people and between all of us we should be able to come up with something that works. After all, we are all in this together.


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: Jul 2012
Posts: 3,267
Likes: 1
PaulB Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
I'm offended that a response was just deleted, wham bam mam style, from my thread, which has been ongoing for months, which I started about my Proton Therapy, and I did mention NeutraSal in one post after it was prescribed to me, and found it helpful. I was going to make a separate post anyway after seeing three members recently mention having difficulty with mucocitiis. By coincidence, a women, who is a distributor in Michigan for NeutraSal, joined, and responded to my post about NeutraSal, and I thanked her for a response, being the same few or three only respond to my posts anyway. I didn't get the feeling she was trying to sell anything, and was just adding to my post, anyway, whatever. I didn't get an apology or sorry for interrupting, a knock on the door first.....not even a congratulations on finishing my treatment or anything, saying more about why it was deleted, whom was involved, and by just reading it seemed like I was the violator. My thread was just hijacked, and there seems like a Gestapo style to its administration sometimes, and not supportive.

Don, I did made a separate thread in Adjunctive Therapy, since it warranted more attention. Actually, a NeutralSal thread was started on 6/2012 by lefty57, and davidcpa was the first to link the NeutraSal website shortly before that, but I figured it was too old to bring up that post again. Hopefully it will not be deleted.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
I can certainly understand your ticked Paul. No one wants to feel they were censored or their thread was. Christine has a much bigger job than anyone really appreciates. She has to make some judgement calls that are never going to be popular with everyone. Her role is so much bigger than the "meet and greet" it may appear. She has to be the bad guy or gal just because of her responsibilities. With the number of people here she could easily be a whole army and not get everything done.

Think of our lawmakers in our great nation. A law is passed and then challenged for decades, sometimes over turned. It is never popular by someone when enforced.

You handled this exactly how it should. You brought it back to a separate thread so others can see what it did for you and even the site to get some samples. That's probably all any of us can do when recommending things. Even if one person goes forward and tries it, your I out was valuable.

Thank you for never giving up but especially for always considering everyone here when you try to add to your toolbox! I, for one, have benefited many ways and many times from your suggestions.

Some don't understand this but what we suggest is NOT because we read something and it looked good. We recommend everything possible because of EXPERIENCE and the things that don't work are never mentioned.

Don't stop trying things and please don't stop recommending what works. We are in this together and the doctors aren't filling that need. The major cancer center here has done almost everything I have suggested in almost 11 years. I just found out they are now sending people to Livestrong at the Y and I've been on that for 3 years, taking literature and spreading it around. They support me on OCF walks and may even send someone to walk with me.

Remember, it's a process, not an event. Don't stop Paul. I hope I speak for everyone when I say we listen.

Tonto


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: Jul 2012
Posts: 3,267
Likes: 1
PaulB Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Sorry, I don't buy it. There is no excuse for rudeness, and it can go both ways, if that's what it is. I had a number of posts deleted.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
If it was a wham, bam, THANK YOU, would it have been different for you Paul. For me, the respect thing really stands out because of my Japanese heritage. We lived so close to our neighbors back in the 50's I could touch their house through the window yet there was no such thing as a squabble.

Don't lose sight of the greatness here but we all really need to figure out how to coexist. We all have pretty much the same goals but much different deliveries.

I'm really sorry this happened in a way that leaves a bad taste in your mouth Paul AND Don. You guys have helped me through it when I felt the same way. I owe it to both of you to pay that back.


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
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