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#199705 01-20-2020 11:48 AM
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Hey there,

I am 10 months out from my last treatment for base of tongue stage four and I am still on a liquid/soft diet. My radiologist mentioned HBOT for help with saliva production. I have read several posters comment that they have done many dives. I'm wondering if anyone has experienced increased saliva flow after oxygen therapy.

Thanks!

Last edited by Thankful Girl; 01-20-2020 11:52 AM.
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Ive done wayyyy more sets of dives than I ever wanted to do. In my situations where I did HBO it was to help with major healing problems after rads.
For me it worked great with healing wounds when I had already been thru dozens of other medical treatments that failed, even after working for months with wound care specialists. This is a very different situation than what your doc suggested to you!!!

Unfortunately, OC patients post rads have a very long road until they can consider themselves completely recovered. Most patients will notice slow or small improvements here and there in their sense of taste and saliva production. Since you are only 10 months post rads, you still have a long way to go until you would be considered completely healed from rads. Most OC patients have been thru substantial side effects when doing rads for OC, when adding chemo its even more complications and side effects. It takes a full 2 years before someone going thru rads for OC is fully recovered. Even then we have had some members report improvements in their remaining medical issues up to 4 months past the 2 year point. A full recovery always seems to take forever and will never happen quickly enough for any of us.

Even though I do not have a medical degree, years of schooling or a background working in the medical field, I am VERY familiar with HBO and everything it entails. Im a bit surprised this was offered to you at all when you're only 10 months post rads. This isnt usually offered for fixing the saliva rads destroyed, at least this hasnt been mentioned by anyone as an option. More often pilocarpine is offered after about a year and half or 2 years post rads. Its a medicine to promote blood vessel rejuvenation but it also has a side effect in some patients with increasing how much they sweat. I tried it and found I was sweating so much it was NOT something I wanted to continue, others havent experienced that side effect and found it helps. Gum or lozenges with Xylitol and sour things will also help with making more saliva.

Hang in there, hopefully in time your saliva production improves. For me at 10-12 months post rads I was still always carrying a water bottle everywhere I went but the longer I was post rads, the less dependent I became on needing to always have it with me.


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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Thanks so much Christine for your response and input. It is always SO encouraging to me when someone familiar with OC tells me there's still time for my saliva production to improve. My surgeon told me that wherever I am a year post rads is pretty much where I'll be in my recovery, and being a month and 1/2 away from that target is very depressing, to say the least. My radiation doctor is the one who mentioned HBO and told me about the positive results they have seen in salivary gland repair. He prescribed the pilocarpine to me a month after rads and it had no effect on me. No increased saliva or sweat. Do you recall your saliva improving at all after all of your dives, or did you already have your saliva back? I know I'll never get all of my saliva back, but I would love to have enough back to allow me to chew food up enough to be able to swallow it. Ya know what I mean? Do you eat solid food? Like a sandwich? Thanks again for all of your encouragement and experience sharing.

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Im surprised to hear your doc said you would be pretty much completely finished with your recovery at the on e year post rads mark. You still have way more than a month and half until you are fully recovered. After my first year post rads, I noticed significant saliva improvements. My sense of taste was still off at the one year post rads mark too. The last taste to return was sweet and it seemed to be very sporadic for a long time with one day tasting one way and the next day completely different.

Im definitely NOT anyone to compare yourself to!!! Every time I thought I was finally ok, I ended up getting OC again. I was only around 7 months post rads when I had my first recurrence and needed surgery to remove the OC tumor. After I was almost a year past the surgery I had all my teeth removed from the rad damage to them. The plan was to get dentures but unfortunately I ended up getting OC again instead of being well enough to get dentures. From that point on there were so many complications I cant even keep track of them all.

As far as my eating goes, no I can not eat a sandwich, hamburger, piece of pizza, apple, or 99% of any other food regular people enjoy. Im very limited to soup broths, yogurt, jello, soft ice cream, cheesecake, gnocchi, sometimes I can eat bread or dinner rolls but its hit or miss if they are very soft and I have butter or dip in soup broth to help make it even softer and easier to chew. Without teeth its almost impossible to eat normally plus I have major issues with my ability to swallow which will never improve so I wont ever do any better than I currently am doing with eating. But... I am so very fortunate to be able to eat even the few items I can eat here and there!!! Ive known quite a few OC patients who arent able to eat or drink anything at all. Not one bite or sip for many years is so much worse than a few of my limitations that I have learned to adapt and to manage. Thats one reason I dont usually talk about my own eating limitations. By knowing so many who cant eat one bite or take even one tiny sip of water is so much more difficult than what I go thru. Im very VERY fortunate to be able to eat the few things I do.

The pilocarpine taken at only a month post rads probably would not work. Once you get past the first year post rads, Id suggest trying to take the pilocarpine again. It takes time to build up before it works, at least 3 maybe 4 or more weeks before you would notice any results in saliva production.
All that medication did for me was to make me sweat like crazy, so much so that I couldnt stand being so sweaty all the time. It was summer when I tried it so Im certain the time of year only intensified my sweating side effect and I probably should have tried it again in the winter months.

Im sorry but I cant remember much about improving my saliva production back then. I was going thru heck with 8 months of 3x a day picc line very strong antibiotics, seeing the wound specialists every other day and doing HBO which is very time consuming. I had a long standing unhealing "tunnel" that was about 6-8" long from behind my left ear along my top L upper jawline to about an inch or 2 right beneath my left eye. No matter what the wound specialists tried, nothing worked to close that "tunnel". The only thing that worked was the 8 months of very strong picc line antibiotics with the HBO dives. I couldnt focus on any other ailments getting better as I had too many serious issues with compromised healing. I had 3 large areas (about 4' x 7") on my thighs for graph sites that were very slow to heal plus the large "shark bite" on my R forearm that had staples in for weeks which hurt like heck. There were so many wounds that werent healing the last thing I paid attention to was my saliva or eating. It took me way over a year, probably closer to 2 years to recover from the 2009 surgery.

Im certain you have lots more time to see improvements with your sense of taste, saliva production and eventually build yourself up to eating almost normally like you did before you had OC. I had a good friend who thought she was completely recovered from her mandibulectomy but about 3 years after her surgery she started working with a speech therapist who worked wonders with helping her to relearn how to improve her eating. She formerly was right about the same as I still am with only a very few items Im able to eat. After a few months and lots of practicing her ability to eat was noticeably improved and she could eat almost anything she liked. I was very impressed at the progress she made!!! After you are getting closer to being 2 years post rads, Id check in with your doc and see if they could refer you to a speech therapist or SLP that could help you with your eating. It takes lots of dedication and hard work but Im almost positive if my friend could overcome what she did, you can too smile . I just wish it didnt take such a long time!!!

Hang in there!!! There really is hope for an improvement down the road smile


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: Aug 2019
Posts: 21
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Thanks so much Christine. Your words are SO encouraging. You sure have been through hell. This disease is so debilitating. It is impossible to describe to people that haven't had OC. I'm so thankful you have survived and dedicate your time to this forum to encourage, inspire and educate fellow OC victims. You sure make a difference.

Thankful Girl smile


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