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#197791 01-13-2019 05:49 PM
Joined: Jan 2019
Posts: 1
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Joined: Jan 2019
Posts: 1
Hi Everyone,

I was an OCF member in 2007-2009. Its been awhile. I had partial Maxilectomy of the upper palate due to having Mucoepidermoid Carcinoma 2 stage.
I have a 2 fold question I hope someone can answer. Having had Oral Cancer in the boney part of my mouth, what are the possibilities of it being linked to MGUS, Monoclonal gammopathy of Unspecified Origins, possible pre-cursor to Multiple Myeloma?
Also, I am currently unemployed as a call center employee. My obturator broke and without insurance or medi-cal I am unable to afford one. Does anyone know where in CA I can receive some assistance. I thought my county facility would assist but they are able too.
Thank you.

Last edited by DonnaKStep; 01-13-2019 05:49 PM.
Joined: Aug 2018
Posts: 345
Likes: 8
Platinum Member (300+ posts)
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Joined: Aug 2018
Posts: 345
Likes: 8
is your obturator just broken in two? is it acrylic like a retainer? I ask because i used to work at a dental school and had to make those for newborn babies with cleft palates. If so, it can be repaired if it's an easy break. if it's shattered...you would need a new one. What part of California? Orthodontists would be able to have a lab person repair most likely. I only know one orthodontist in Cali.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
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 best place for locating a specialist normally would be going thru your insurance company. Even if you currently are without insurance, are you able to check your previous insurance companies website for providers? Are you able to call the original place where you obtained the obturator? If not, maybe they could help with giving you info how to get your obturator repaired? Id also recommend asking at your treatment facility and ENTs office where they might have contacts to help you find the right doc.

Im not sure how much we can help you. With OCF being a very small non-profit, surprisingly we maintain a worldwide reach. Its highly unlikely you will be able to find someone with a similar diagnosis who is currently active on our forum to view your post. Plus they would need to be from your specific area and use an obturator. Im sorry but OCF does not rate or maintain any info of what physicians/dental professionals provide, specialties, their locations, education, etc. Theres online doctor/dental referral sites Ive seen advertised on tv (sorry but I didnt pay attention to the names of the referral websites) that might be a way to find the type of doc you need. Use care when using thru referral sites as you never know what criteria they use to rate docs or how up to date their info is. To me the referral places seem to be a way for someone to make money. Maybe the doctors listed all pay fees to instead of earning their way to the top spot for being a great doctor? After care for OC patients leaves alot to be desired, especially when it comes to dental needs.

You mentioned you had been a member for a couple years. I can combine your original account with this one so you have everything all in one spot. Please PM me any info you can remember about your old account. I need things like your former user name, screen name, email address used and anything else that you can remember.

Hope you find what you are looking for. Best wishes!!!!


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

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