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Joined: May 2016
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dmbart Offline OP
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I completed my treatment, proton radiation, for SCC of the maxilla and nasal cavity 2 months ago. During treatment I developed congestion and dripping of the nose. My doctor said it should clear up 3 to 4 weeks after treatment ended. I'm 2 months out and it's no better.

My main problem is being able to not breathe through my nose. It's like a gate, when it's open I can breathe but when it's closed I can't breathe through my nose. It closes when I sit or lie down or talk for more than a couple of minutes. I've tried breathing Vicks, sometimes helps. I've also tried Halls but lately they are burning my mouth, they basically work when I'm standing, not so much when I'm sitting. The one thing that does work is walking outside, sometimes I'll walked for 20-30 minutes then go back inside, AC I'm in FL, and it closes back up again.

Has anyone experienced this side effect and if so did you find something that helped and how long did it last? Any suggestions would be appreciated.

I've only had 42 proton treatments, nothing else.


DMB
SCC of right maxilla & nasal cavity, stage 4a, 3/10/2016
42 proton treatment completed 9/1/2016
Chemo - carbo, taxo, &Erbitux completed 09/27/17
Joined: Jun 2007
Posts: 10,507
Likes: 6
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I can definitely sympathize with you regarding your sinus problems. Ive had issues with this too. Please understand, recovery from radiation treatments can last much longer than 2 months. Plus, every patient is different and will recover at their own rate. It takes a patients body up to 2 full years after finishing rads to completely rebuild itself. Radiation does considerable damage to not only the tumors but also the surrounding tissues making everything much slower to heal. Most doctors focus solely on eliminating the cancer, everything else is collateral damage. Many patients find themselves dealing with many unpleasant side effects that appear after finishing treatments which is also when the patient doesnt see their medical team as often.

I had IMRT radiation treatments for 70 grays. My tumors were on the inside of my left cheek and behind my top left molar. Depending on where your tumor was located your sinuses may have taken a bigger hit than other head and neck areas. For me, my sinuses somehow became damaged from the rads making it where its like I have a head cold every single day of the year. I feel the same way as you described. Either Im so congested I cant even breathe or blow my nose or its constantly running like a faucet. Ive also noticed when I eat it seems to cause my sinuses to act up even more. Ive found slight relief with prescription sinutab every morning (one 24 hour dissolvable tablet) and liquid kids benedryl at night. If you do try getting some relief with meds, be careful as anything that drys the sinuses usually also drys your mouth. You may experience some dry mouth after going thru rads. Thats another thing that usually improves very slowly over time. Unfortunately its normally many months before patients notice any major improvements with their saliva.

Im very surprised you are able to tolerate Halls. I had rads over 9 years ago and I still would not be able to have a Halls in my mouth for more than a couple seconds. Its probably because of your tumor location and where the most scatter radiation affected. Your issues should be more sinus related. Hopefully this will make your other side effects like dry mouth and sore throat not as intense. I know its a small consolation with the other sinus problems you are having.

Best wishes with your continued recovery.


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: May 2016
Posts: 15
dmbart Offline OP
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Thanks Christine.

Glad to hear from someone who has been through it. Sorry to hear your problem lasted so long, but it's better to get a better estimate. I teach adult job training, I was thinking I might be able to go back to work in January however I don't think that is practical until the nasal issue is totally cleared up.

My tongue received some radiation just because it was so close to the treatment field so I have had some taste bud issues, it's not bad now although a lot of things still don't taste the way they used too. I had dry mouth before treatment but worse now, salivary glands on one side were treated.

I already take Allegra for allergies and Vesicare for the bladder both of which dry you out somewhat so wasn't sure if I should add other meds on top of them but might try some benedryl at night. I'm developing a cough I think from post nasal drip.

I count myself lucky that my side effects are relatively minor considering what others have been through.

Debbie



DMB
SCC of right maxilla & nasal cavity, stage 4a, 3/10/2016
42 proton treatment completed 9/1/2016
Chemo - carbo, taxo, &Erbitux completed 09/27/17
Joined: May 2016
Posts: 15
dmbart Offline OP
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Joined: May 2016
Posts: 15
For anyone who might have the same problem in the future. I picked up on Christine's comment about using benedryl at night, I tried that for 2 weeks, hoping it would help me sleep better. Unfortunately, I was still waking up about every 2 hours because I couldn't breathe through my nose. I went to my general practice doctor, I had developed a cough, I think from the dripping. My nose had started dripping, most of the time I didn't notice anything until it was rolling down my lip. My GP recommend I try sudafed, the one behind the pharmacy counter and cough medicine with codine. The sudafed was non-drowsy, so much for getting more sleep, so I started taking it during the day. One the first day I had quite a bit of discharge from the right side of my nose, that was the side with the tumor and the most radiation. The next day I didn't take the sudafed, I didn't have any discharge, I'm hoping the discharge is a sign that the nasal congestion will be improving soon, so I've taken for the last 2 days. I have had some discharge, but not nearly as much as the first day.

Something to try.

Debbie
SCC Of maxilla and nasal cavity
42 proton therapy treatments in 2016


DMB
SCC of right maxilla & nasal cavity, stage 4a, 3/10/2016
42 proton treatment completed 9/1/2016
Chemo - carbo, taxo, &Erbitux completed 09/27/17
Joined: May 2016
Posts: 15
dmbart Offline OP
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Joined: May 2016
Posts: 15
Hi Christine,

I went to an ENT the other day, my oncologist wants me to see him about every 6 weeks. He said I had a lot of scar tissue in my nose that will need to be removed before the breathing issue will improve. He said its probably too soon to do anything yet. Did you have scar tissue removed?

Thanks
Debbie


DMB
SCC of right maxilla & nasal cavity, stage 4a, 3/10/2016
42 proton treatment completed 9/1/2016
Chemo - carbo, taxo, &Erbitux completed 09/27/17
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
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Debbie, Im sorry but Im not sure if I had scar tissue removed surgically. My memories are still hazy about those 2 months I spent in the hospital in 2009. I think towards the end of my extended "vacation" my doc did another clean up surgery of my jawline and lip but I cant be certain. I was kept in a medically induced coma for 3 weeks, kept in the burn unit and then finally moved to ICU. I had to wait at least a full year after that big surgery before I could have any reconstruction. I do remember my doc saying it would take my body a full year until he could do any other surgeries to my face, jaw and neck.


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: May 2016
Posts: 15
dmbart Offline OP
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Joined: May 2016
Posts: 15
Thanks Christine. Can I ask how old you were when you went through the surgery? Besides being a wimp, I'm already in my 60s and don't see the value in putting myself and family through all of that at the later part of life.



DMB
SCC of right maxilla & nasal cavity, stage 4a, 3/10/2016
42 proton treatment completed 9/1/2016
Chemo - carbo, taxo, &Erbitux completed 09/27/17
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
DMB, I completely understand your point of view. I had similar feelings but being a single mother with 2 teenagers depending on me made it one hard decision. I almost refused my mandibulectomy in 2009 but the members of this forum convinced me I couldnt quit before I at least tried to beat the cancer. I was 46 when my doc told me to get my affairs in order. Looking back on how my life since then has been I cant say I made the wrong choice. I was so tired of being sick and going thru so much that I felt enough is enough and I would just let nature take its course. My main concern in my decision to not get treated was my children. I felt I could better prepare them for my passing if I was able to explain it slowly over weeks instead of dying suddenly during the surgery. Every single day is a gift. Im so thankful that the kind members of this group thought enough of me to speak up. My life is a very good one since the mandibulectomy. Ive been here to see my oldest child get married and my youngest child have 2 babies of their own. Being a grandmother is the best thing in the world!!! If you are weighing out your options, please reconsider and do as I did. Dont quit before you try to beat cancer. I know its not easy but please put all your best efforts into it before you give up.

No matter what you choose we will always support your decision.


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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