| | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | 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 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | 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
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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 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | 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 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | 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 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 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)
| | | | | Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Mar 2003 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.
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | 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" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 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 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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)
ChristineSCC 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  | | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | 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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