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Joined: Sep 2002
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Gary,
Yes, I went through approximately 40 HBO treatments a year and a half ago, following my first sequestrectomy. Coincidentally or not, it was during the time of the HBO treatments that I became very ill with what I thought was the flu, but turned out to be aspiration pneumonia. The HBO treatments led to a serious deterioration of my vision by causing minor cataracts to grow, and my hearing also got worse during that period.
The good news: I got cataract surgery and see better than I have since age 10 and I now wear hearing aids, which I probably needed for a while anyway. I only had to pay for the hearing aids. Thanks goodness for Medicare.
Best of luck with all of your issues.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
Joined: Nov 2002
Posts: 3,552
Gary Offline OP
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Hi Danny, at least we're still here to bitch about it! I dealt with the FUO for a year and a half before they figured it out. Since the tube I have aspirated twice from reflux so there is more than one way to get pneumonia. Wasn't serious enough to check into the hospital though - just rode it out at home and it was the typical chills/fever/fever break in less than 12 hours thing. The last time I saw the eye doctor they told me I had developing cataracts as well. My hearing also sucks but after 50+ years standing next to the ride cymbal, I'm not surprised. Indeed Medicare has saved my ass more than once!


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Joined: Nov 2002
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Gary Offline OP
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Feeding tubes aren't awful if you're not on formula!


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Joined: Dec 2003
Posts: 2,606
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I have developed a type of macular degeneration in one eye, from radiation, with massive huge floaters. I guess it never stops. I wonder if I will lose my sight, hearing or swallowing first some days.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Nov 2002
Posts: 3,552
Gary Offline OP
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Posts: 3,552
Ed, I worry about that myself, especially when I could watch the collimators changing shape during treatment.
\


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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Posts: 251
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Posts: 251
Dealing with the latest episode. I'm resigned that this is how it will be from here on out.

Couple of aspiration pneumonia episodes since I last posted. Then, last week ER and a week in the hospital with pneumonia that isn't typically aspiration - more likely due to weakened immune system and possibly infection from rotting teeth. Guess where the rotting teeth came from...radiation. This latest pneumonia also resulted in sepsis, so even after being released from the hospital, he's going in every day for IV antibiotic therapy. Because of all the poking from IVs and chemo during treatment, finding uncompromised veins is always a challenge.

Swallowing issues haven't gotten any better, either. Even after more than a year of weekly swallowing therapy, swallowing seems to get worse and worse. Husband is now resigned to having his PEG tube for the rest of his life and getting most of his nutrition that way.

I hope somebody that has just started into this journey isn't reading this. Then again, maybe treatments have changed in the last 10+ years and these late side effects are a thing of the past - I certainly hope that is true.


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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Sorry to hear of the latest challenges. I've been battling pneumonia most of the year myself and my eyesight is coming and going. I seem to be the only one left from the days of old without a feeding tube. This stuff gets overwhelming at times.

I hope things get better, if I may use such a word. Hang in there, Anita. Sending you some heartfelt love and hugs.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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Posts: 1,024
Me too Anita.
Sending you positive vibes , hugs and love.


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: Jun 2007
Posts: 10,507
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Im so very sorry to read about the latest struggles your husband is having.

Have you looked into the Mic-key button for a permanent feeding tube? Ive heard many good things about all the benefits of having a small button instead of that big "tail".

Best wishes!


Mic-key button feeding tube (main OCF pages)





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: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
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Perhaps you should start a new thread on Trismus? I have lots to say about this:)


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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