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#198874 08-17-2019 03:23 AM
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Hi All,

I am 56, from England and a US citizen. My wife is Korean, also a US citizen; we lived in the US for 30 years and in Korea for the last several years. 2 years ago I was diagnosed with stage 4 oropharyngeal cancer that had spread to a lymph in my neck; I had multiple tumors and the largest was 6cm. I felt the obstruction in my throat getting bigger and my tongue went hard like rubber on one side, all the way to the back, which was affecting my speech and the bulge on my neck was getting bigger. I guess it took 37 years of daily drinking and smoking 2 packs a day to cause these things but the really noticeable symptoms developed in a very short time. Even so, I was still in denial until I started bleeding from my throat upon lighting the day's first cigarette. At that point the Doctor/Hospital visit was clearly unavoidable. I always believed I would quit smoking/drinking and I was right about that, unfortunately it just took me longer than it should have. Better late than never!

After MRI & biopsy, I was taken in for radiation and chemo within a week. The chemo wasn't bad, I had a low dose to supplement the radiation, I never got nauseous and I didn't lose any hair. The radiation lasted for almost six weeks and that was really rough toward the end. I couldn't stand up or eat by that point and I was in a lot of pain, so I was admitted for the final two weeks. I got fluids, nutrition and meds through IVs but my miracle potion was Ensure Nutrition Shake (Abbott Labs) which was the only thing I could get down. Literally everything else tasted exactly how I imagine human poo would taste. I lost over 30lbs which was a lot for me, starting from 170 but I slowed my weight loss and eventually gained a lot back thanks in large part to the Ensure. Ensure isn't stocked here and shipping cases of it from the states was a bit pricey but worth every penny!

I just became aware of the OCF site a couple of weeks ago and have been reading posts. I knew I was fortunate not to have surgery, not to lose my hair and not to lose any teeth (so far). I knew I was very fortunate to have clean scans following treatment. My Doctors and Radiation Techs told me that my response/recovery was atypical (good) so I knew on a logical level how lucky I had been. However, after reading posts in these forums, I don't think the word lucky even scratches the surface, so far at least.

All that radiation affected me mentally and it affected my stamina, which is still low 2 years later. I took a couple months off work for initial treatment but I had to quit my job soon after I returned to work, I couldn't deal with things as I had and I needed a lot more than 8 hours sleep a night. Swallowing food was a real problem and my taste buds took a long while to recover, but those things got better in the second year. I still have to be careful to drink liquid (or have liquid at hand) when I eat, but function and taste is greatly improved. I have no external scars, the only outward sign is some tissue damage in my neck from the radiation which looks kind of like a double chin but my vanity is not worth any cutting which might start something bad happening.

I have a question or three about financial/insurance/disabilty as it relates to my situation but I'll post that in the insurance/financial forum.

I wish none of us had to meet under these circumstances but, while I wouldn't wish it on anyone, it is nice not to be alone. Plus, you know the old sayings: "a trouble shared is a trouble halved" and my favorite: "misery loves company" :-)

Best regards,

Martin


Dogs rule! (when the cats permit him ;-)
dogfather #198881 08-17-2019 10:31 AM
Joined: Jun 2007
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Welcome to OCF, Martin! Im glad you have found our group! Sounds to me like you have done extremely well with everything you have gone thru. The recovery phase as you already know is NOT easy at all. It does take a full 2 years to have a complete recovery. We've had a few members over the years who have reported noticeable improvements with their sense of taste and saliva production happening after the 2nd year anniversary of finishing rads. I hope you are one of the few who see the extra improvements!!!

As far as insurance questions go, not sure how helpful we can be about those things. Theres soooo many out there with dramatic differences within a state from going county to county. Oral cancer (OC) has so many components we need to learn about which can be overwhelming for many patients and caregivers. Most of us get a crash course when diagnosed with a serious illness we've never heard of. I know back in 2007, I was completely ignorant of every single thing to do with OC, all of it when I was diagnosed. Boy did I learn!!! Anyway, dont worry you are in the right place for help, we will always try to help everyone as much as possible.


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
ChristineB #198884 08-18-2019 02:36 AM
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Thanks Christine. I'm not certain my question should go in that forum, maybe I can ask here and you'll let me know what you think?

After some more thought, I guess I can boil my questions down to one. Does the following site look like a scam?

If it is, it's really well done, it looks very professional but the more I read it, the louder the warning bells ring because if something sounds too good (or even a bit good) ....
The site is safe to visit, it doesn't try to do anything nefarious. I use Norton 360 on all my devices and keep them up to date and that says it's fine.. However, regarding the truthfulness of the information, it's sad that we have to doubt everything these days. May I ask what you think of it? Should I simply ignore this and similar sites?

Many thanks,

Martin

PS: Should I just stick to official US government sites for information? I mean, if you can't trust the government, who can you trust? :-)




Last edited by ChristineB; 08-18-2019 07:37 PM. Reason: removed scam link

Dogs rule! (when the cats permit him ;-)
dogfather #198887 08-18-2019 08:24 AM
Joined: Aug 2019
Posts: 57
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Posts: 57
Hi Martin. I’m no expert, but my layman’s view is that site is an advertisement for legal services that could help you litigate a claim against social security. Not sure if you have approached them directly or not, but you shouldn’t require a website to help you find legal advice if and when you think it is required.


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
dogfather #198891 08-18-2019 08:36 PM
Joined: Jun 2007
Posts: 10,507
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PLEASE!!!! Do NOT post a link to any website when you suspect it to be a scam!!! OCF is not the right place to bring suspected scam sites or links to that sort of site. I know I sure do NOT need any computer problems!!! You just never know what or who is really behind these types of scammer sites and what damage they could do. Its best to just avoid those sites altogether and save yourself, other members, and OCF from that kind of exposure to potential scammers.

Yes!!! That site, whatever it is (I have removed the link from your post) is definitely NOT from the Social Security website or any reputable site thats affiliated with them. If you look on the bottom of the page it says they are an attorney advertisement, not an attorney referral service. I wasnt on the page more than 30 seconds and then on second thought, I probably should not have even clicked on the link at all so I immediately killed the page. On the internet, theres far too many people who are looking to take advantage of others and make money for doing little to no legitimate work.

I suggest only going onto reputable websites. If you have social security disability questions the SS website should have everything you need, I know the SS site has an extensive Q&A section for almost any imaginable question. You can ask your questions here but being OCF is not just limited to the US and Canada, it has a world-wide presence with members from all over the world. SS has a list of conditions that automatically are approved.

A few things Ive noticed over the years that help tremendously in getting SS disability approved when first applying.....
1. Answer every single question with as much info as possible.
2. Enclose a note from at least one doctor with how long they have been treating you, all tests you have been thru and the documented results, as well as a list of your physical
limitations and the doctors opinion if each ailment is now a permanent condition.
3. You can write your own note to enclose with your application.
4. Document everything!!!! Every single doctors appointment needs to be written down with full info including the doctors name, specialty, address, phone number, etc.
5. I think you already have been doing this when you came upon that scammer site... do your research thru reputable websites like SS.
6. Whatever you write down you need to be certain you have verifiable proof if asked for more info down the road.
7. Theres a few questions about basic daily living skills, make sure you honestly report any and all on-going issues you have with this sort of thing. ex... OC patients who have
had neck dissections often will not be able to fully raise the hand on the side of the neck dissection due to the surgery. This is a permanent condition that will improve only
slightly after time to properly heal, PT and exercises. Almost all who have had the neck dissection will never improve as much as they would like to. For me, its an
adventure going thru TSA! My inability to fully raise my left arm/hand often earns me the full pat down experience which I would rather skip. Thats a whole different story in
itself!!! LOL!!!

Hope this info helps you!

Social Security Disability website

Adult Social Security Disability Impairments List


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
ChristineB #198898 08-19-2019 07:08 PM
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Posts: 3
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Posts: 3
Thanks Christinne, I appreciate the detailed information. Sorry about the link, I won't post any more whether I think they're safe or not.
Best regards --martin


Dogs rule! (when the cats permit him ;-)

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