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#191723 02-03-2016 02:45 PM
Joined: Aug 2011
Posts: 596
Kerri Offline OP
"Above & Beyond" Member (500+ posts)
OP Offline
"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 596
Hi, all.

I have had a miserable winter so far with one respiratory infection after another. I have had a few scattered consecutive days of relatively good health during this time.

Any time I get a head cold, it inevitably ends up in my chest due to post nasal drip. I was like this before OC. I develop bronchitis with every infection and it lasts for weeks where I am miserably coughing and hacking. I am on my 3rd round since Thanksgiving and I never quite got over the previous infection. I use albuterol, Flonase, Mucinex, and prescription cough medicine, but that only helps so much.

The last couple of infections, I noticed that I am wheezing in my upper airway (trachea). It'a very loud as it is close to my hears, but I don't know if anyone else can hear it. It is worse when I lay on my right side. I am unable to lay on my left side for prolonged periods due to hip pain (old injury). When I lay on my back, I think I am having apneic episodes because I wake up gasping for breath and coughing.

I am probably the only oral cancer survivor who struggles with obesity, but it has been a lifelong struggle. Of course I lost weight during both rounds of treatment, but I have since gained all of the weight back, with interest. I haven't been able to work in my profession (or work at all) in 16 months. I have been sedentary during this time because I can't seem to overcome the inertia of my fatigue/exhaustion.

I figured that I likely have tracheal stenosis as a result of radiation damage and obesity, which is causing wheezing in my upper airway. I had a resent scan, so I know that I don't have any masses in my neck that might obstruct my breathing.

I am wondering if anyone has this problem (tracheal stenosis) and if so, how are you dealing with it?

I have many reasons to lose weight, but I don't know if that will solve all of my problems.

I look forward to any replies you all may have.

Love in OCF,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
Kerri, it sounds like you have sleep apnoea. Especially if you are in the overweight range ( like me ). You should be able to be referred to a sleep clinic for this . A CPAP machine will sort this out for you and reduce the other risks associated with sleep apnoea like an Atrial Fibrillation ( heart Arrhythmia).
If you are only noticing the wheezing while you have the chest infections I would be talking to the Dr , maybe a simple Salbutamol inhaler will fix this. Of course it could be as simple as secretions vibrating in the upper trachea and a good cough will clear this.
Probably not much help, but I am thinking of you,
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: Aug 2011
Posts: 596
Kerri Offline OP
"Above & Beyond" Member (500+ posts)
OP Offline
"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 596
Thanks, Tammy.

I was supposed to be referred for a sleep study over a year ago to assess reasons for my fatigue, but things fell through the cracks because they weren't able to get insurance pre-authorization. Maybe with these symptoms they will reconsider. I know my Mom has been referred for sleep studies... She snores horribly!

Thanks for the advise and I'll keep you posted!

Love in OCF,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Aug 2011
Posts: 596
Kerri Offline OP
"Above & Beyond" Member (500+ posts)
OP Offline
"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 596
Just an update on this end...

I have been treated with a "prednisone blast" for 5 days, along with all of the other things I have been doing.

I saw my PCP and mentioned to her that I looked at the final written report from my recent CT scan of my chest. I am now easily able to look at test results via the Mass General Patient Portal.

When I saw my MO after the scan, she said everything looks great. The only thing that I saw that I had no idea about was that I have a 3 mm ground glass nodule in my right lingula. The report said that it was stable from my CT scan of my chest the previous year. Again, I had no idea it existed. I guess my doctors know that I worry about every little detail and perhaps they didn't feel it was necessary to tell me about it. I'm assuming a lot perhaps.

Anyway, I mentioned it to my PCP and she said that it should be addressed by a pulmonologist. Given that she recently diagnosed me with uncontrolled asthma and recurrent respiratory infections, she has referred me to a pulmonologist that I will be seeing soon. The doctor's office requested to see the films on CD and not just to read the report, so I know that he will be thorough when I see him.

I'll keep you all posted on this, too!


Love in OCF,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!

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