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Joined: Jun 2016
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Janner Offline OP
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Joined: Jun 2016
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My bf of 12 years has been diagnosed with stage IV HPV Oral Cancer and has been recommended to start chemo and radiation. He was told by the oncologist that surgery is an option. So we meet with the surgeon at Swedish in Seattle on Monday to see what that would involve.

Joined: Jan 2013
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Patient Advocate (1000+ posts)
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Joined: Jan 2013
Posts: 1,291
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Welcome Janner to OCF. You've arrived at one of the best online resources for information and support for oral cancer patients and survivors.

If you can provide the details of his diagnosis it would help us provide better replies. Many here have experienced much of what you are going through and enjoy life after treatment and recovery.

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: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
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"OCF Kiwi Down Under"
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Posts: 1,024
Hi Janner, I am sorry that you are having to deal with this.
I hope the appointment today went well. It would be a good idea to get a 2nd opinion from a top CCC ( Comprehensive Cancer Centre). A CCC uses a tumour Board approach and your treatment is decided by a large Multi disciplinary team.
Research has shown that these centres get the best outcomes for their patients.
Come here often for advice and support. There are many here who have also had this diagnosis.
Christine will be along soon to give you advice re nutrition and hydration. Hers are words of wisdom.
Thinking of you both,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,406
Hi Janner - adding my welcome to our little family. We're all here to support you in any way we can. How did the Monday meeting go?


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Welcome to OCF!

Since your boyfriend has not yet received a treatment plan, I suggest a second opinion. Im fairly certain there is a Comprehensive Cancer Center (CCC) in your area. Thats a treatment facility where a team based approach is used so all the specialists are on the same page. Hopefully a CCC is an option for your boyfriends treatments. When looking at treatment plans, remember surgeons always say surgery is the way to go, same for radiologists and medical oncologists say chemo is necessary. Also remember once its been removed you cant put it back to its original functionality (even with skin graphs). This is why a second opinion is so important!

List of CCCs

For now, anyone who offers their assistance write down their contact info and tell them when the time comes you will let them know what they can do. People genuinely want to help but often dont know how. When the time comes you will help, dont be afraid to reach out and ask for it. Call the American Cancer Society (their avail 24/7) and get the paperwork started for volunteer drivers and also you can ask for help with either prescription or transportation cost help (up to $300).

If he hasnt already done blood tests, make certain they are testing his thyroid and testosterone levels. If doing rads, your bf may have problems years down the road with his thyroid. A blood test now ensures he will know what his regular baseline thyroid levels should be. Taking a pill a day to manage the thyroid isnt a big deal, but getting the baseline level is.

Your bf should also see his dentist right away for a good check up, cleaning and for flouride trays to get made. If he has any teeth that arent in good shape he should get them pulled prior to starting rads (if he is doing rads). Any major dental work after having rads can be a real pain so get everything taken care of now.

And now the biggest thing you and your BF will need to focus on for at least the next year or more... his intake. If you spend any time reading posts on our site you will learn I am the one who always nags everyone about their intake. Im trying to help them to avoid the pitfalls that I went thru during my treatments. I was hospitalized several times for malnutrition and dehydration. I cant stress enough how vitally important your BF's intake is. Every single day he must take in a minimum of 2500 calories and 48-64 oz of water. If he can do more that will only help make everything easier. Your BF should start right away and eat all his favorites now, desserts too. If he is slim or average build he needs to put on a few extra pounds. He shouldnt worry about gaining a couple pounds, he will probably be like most of us and lose weight during his treatments. When a person has cancer they burn up calories at an dramatically increased rate. During treatments and recovery he must boost his intake or he will have problems making him feel horrible. By starting to focus on intake now it will make it much easier to track daily during treatments and recovery.

I hope this will help make things easier for you both. Read and educate yourself about this horrible disease. By learning about OC, you can help by being a strong advocate for your BF. As a caregiver you have a tough job. Please remember to take time for just you too. You dont want to get burned out as it usually leads to getting overwhelmed. Hang in there, we will help you both get thru this.

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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