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#197814 01-21-2019 09:26 PM
Joined: Jan 2019
Posts: 1
Stanvas Offline OP
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Joined: Jan 2019
Posts: 1
Hi All,
My first post... Hopefully we can give each other advise as I have been through the surgery and treatment and now recovering!
I was diagnosed with cancer on the right side of my tongue (squamous cell carcinoma) with the possibility of it spreading to my jaw and lymph node.
I had surgery in March 2018 removing half of my tongue and flap reconstruction (from my left thigh) a large number of dental extractions, neck dissection to remove lymph node, lip and jaw split to access the tongue etc. They also discovered that the cancer had spread to my Thyroid and these were removed recently (Dec 2018)
Like many, I completed the 33 days od Radiation & Chemo treatment - June 2018. This is when the challenges really start! Talking, eating and just trying to be normal again.
I lost my job and have no personal insurance so became very depressed and now experiencing financial hardship - but we battle on!!

I was given the all clear last week - they believe they have cut out all the cancer and it has not spread any further! YEY!!

One of the hardest things at the moment, and always has been is the saliva & Mucus! Although better, it still drives me nuts!
I have tried just about everything and my doctors always just say - it takes time!
Recently I have "Glycopyrrolate" which has helped a bit but does increase the dry mouth.
Has anyone found anything that helps? I still have the stringy Mucus down the back of my throat and produce too much saliva that I cant talk - then of course the dry mouth sets in!

I am also considering trying "Hyperbaric Oxygen Treatment" - mainly for my jaw and nerve damage in my mouth, has anyone tried this?

Regards
Stanvas

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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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Welcome to OCF, Stanvas! Im sorry to read about what you have already been thru.

Oral cancer (OC) is a disease that comes with barbaric treatments and a never-ending recovery phase. One thing to understand is we can never get well as quickly as we think we should. Years ago my doc said it takes one month of recovery for every week of rads. Unfortunately what you have described as your current health issues are completely normal for an OC patient/survivor who is about 6 months post rads. Everything will improve but yes, it does take time. One thing I can suggest is watching your daily intake. You still have a year and half to go with your recovery before your condition would be considered your "new normal". I suggest first having a long chat with your docs and ask about seeing a nutritionist. Try to have as balanced a diet as possible, ask your docs about taking a regular multi-vitamin. Also check if its ok to add high protein whey powder to your diet to boost your daily protein which helps with healing. I know hearing a complete recovery after OC and radiation treatments is 2 years sounds like its forever, it really isnt. Your doc's statement of "it just takes time" is exactly what we see around here. Im sure if you think back to your first 2 or 3 weeks after finishing rads and how lousy you felt then compared with how you feel now you will notice significant improvements. As time goes by you will continue to notice improvements with your sense of taste and saliva getting closer to how they were before rads.

As far as HBO (hyperbaric oxygen treatments) goes, Im surprised this was offered to you being only 6 months post rads. Ive done wayyyyy too many HBO dives and greatly dislike the amount of time the HBO treatments take. It felt like my entire day Mon-Fri was devoted to HBO. It takes approximately 2 hours for the dive, my vitals were checked prior to and after the dive plus changing clothes before and after the dive. With everything factored in, HBO took about 4 hours, 5 days a week. Also, once a week I was required to meet with the HBO doc to assess my condition and see if anything improved or changed. HBO is still a bit controversial with some docs swearing by it and others saying it doesnt work. While I greatly dislike the amount of time I felt like I was trapped in a glass tube, HBO healed problem areas that nothing else worked on. After rads, anyone who needs any teeth extracted should do the Marx Protocol which is 20 dives prior to having the tooth removed and 10 afterwards. This helps OC patients to avoid far bigger (and very painful) problems down the road namely osteoradionecrosis.

You mentioned being depressed. I am so sorry to hear that!!! This is something that is very common among OC patients/survivors and caregivers. You may want to ask your doc about who you can talk to about this. Your treatment facility should have someone who works with their cancer patients. You may need anxiety meds to help get you back to your regular self. Id guess that over the years Ive seen at least 50% of OC patients that need help to manage so much. Its nothing to be ashamed of. Here you are among friends, we completely understand where you are coming from and what you've been thru. Reading posts here you will see many people in a similar situation as you. Knowing you are not alone in this is also a huge help in lifting your spirits.

Hang in there!!! Everything really will improve, it just takes time.


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: Feb 2015
Posts: 133
Likes: 7
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: Feb 2015
Posts: 133
Likes: 7
Stanvas: The good news is you've survived. Keep surviving and you'll have a good shot at overcoming the difficulties. If your cancer was not caused by HPV, stay away from smoke and drink (or it will come back). Good luck getting through this tough time. Let us know how you progress. Tom


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15
SCC stage 1, lower gum Mar '23

TLC356

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