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Joined: May 2009
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hisnibs Offline OP
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Hi all
I want to ask you folks a couple of questions. See the questions, then below see why I am asking:

  • Has anyone heard of Radiation machines faulting and having to be restarted while the patient is in there? TOMO 2-3 times a week it would shut down while I was in it?
  • Has anyone heard of Radiation machines breaking down on a regular basis while they are getting boosts or just using that type of machine? (I forget the name of the boost machine)
    My boost machine was also needing repair three of the five days I needed it. They actually tried to postpone my last treatment because it was down.
  • Can anyone suggest what I might do nutritionally and medically to raise my odds against having to go through the hyperbarrick and surgery route? (SP)

I saw a dentist today at UVA (University of Virginia hospital) and was told the ulcer I have been speaking about in the forum is a radiation ulcer. The dentist also saw exposed bone in that area. This is about a BOM with a skin graft that detached after it became ulcerated. I had been complaining about pain in this area for months and doctors kind of assumed it was from the radiation treatments and surgery. They never really looked at the surgery area until a month after radiation. They said this was normal.

The dentist said that I am healing slowing in this area. He gave me a strong rinse and scheduled an appointment in a month.

Last edited by hisnibs; 11-11-2009 07:59 PM.

Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
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I was very fortunate as my machine never was under the weather once during my Tx even though I was warned by the techs before I started to expect a delay or 2.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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I experiences delays on three separate occasions during my 7 weeks of treatment.


DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10
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hisnibs Offline OP
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I was in the TOMO machine 5 days a week and 2-3 of those days the machine broke down while it was treating me. I had delays at the end but I am concerned about being inside while I am being radiated and the machines would fault and need to be restarted. They would leave me under that damn mask until they got it working again. They would tell me that it could not harm me, but they said I would be fine through this. Now I have something that can be potentially worse than the cancer?

I don't want anyone cutting on my jaw and removing teeth. They told me I could keep my teeth when I was considering taking them out. So why is it not so at this point? They want to look after a month to see if I heal any. My complaint for months was that everthing is getting worse. Everyone wrote my complaints off as being caused by treatments and original surgery.
Sorry. I am so over this. It's alright to talk about oxygen chambers and surgery while they don't have the balls to help with pain issues now. To me, I cannot help but think something was wrong and I got burned as a result of it. That is why I am trying to find out the experience of others. What is the norm? I have lost faith in at least one team of doctors.



Last edited by hisnibs; 11-12-2009 09:43 PM.

Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
Joined: May 2009
Posts: 114
hisnibs Offline OP
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Again... sorry about being angry here. The dentist said I was healing slow, but a ton of tastbuds are carpeting my tongues after a month and a half of doing the radiation. I can taste meat and cheese and a lot of stuff. I had my first meat and veggie meal today. Afterwards I ate a ham and cheese sandwich. Point being it that I don't feel like I am healing slow anywhere else. That is why I am upset..

I going to go back to my cave.... Thanks folks.


Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
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Understand the anger.

Husband wanted a "cave" more than once.
Some days his taste still goes off or wonky.
Hopefully the taste goes off when I cook a really lousy meal.
But it stinks when it happens to strike during a super meal.
Last night the very occasional beer tasted funny to him.
It is surprising how long the healing can take.

Margaret


caregiver to husband
right tonsil stage 3
35 IMRT TX completed 1/5/2007
PET Scan clear 3/07
biopsy 9/07 clear
1st yr PET scan 12/18/07 clear
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Hisnibs,
I had the Tomo go down while I was in it, but it was during the CT scan phase, not the RT treatment phase.

Several other times it didn't like something and would spit me out before it started one of phases.

After a short delay they always got it going again.


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

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hisnibs

My radiation TX machine broke down at least once a week after I had driven to the CCC and was waiting for my turn. My 8 weeks of radiation stretched out to 10 weeks as a result. Very frustrating. Congratulations on getting your taste back so soon. Based on my experience plus what I have read here at OCF you have recovered exceptionally fast in the tastebud area which is probably why your normal recovery in other areas seems so slow.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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hisnibs,

I have ulcers on both sides of my tongue. The left side is almost gone three weeks out and the right side still hurts but not as bad as it did the past few weeks.

My RO said ulcers can last 3 to 6 weeks. I think I may go out the 6 but I can take the pain now that I know it is diminishing.

My IMRT machine went down on me twice in treatment. The tech said that it has a failsafe that counts the level of rads. He said it will never give you too much and will give you what you need if it goes out to soon. So when it gets back up it will makeup any shortfall. I know this because I counted the buzzes every time. I was getting five 15 second buzzes and I got 6 one time and two were shorter times. I was counting my breaths every treatment and noticed the change in treatment. I had to ask when I got up and only then did they tell me the machine had an "un-scheduled pause". It happened again one more time and we all commented on it.

Kelly


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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Posts: 114
hisnibs Offline OP
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thanks...It appears not to be an unusual event then.


Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
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