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Joined: Feb 2012
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I always have wondered why radiation is skipped on week-ends? I heard once it's because our bodies have a chance to recover before starting another week. Or, is it for convenience since they are closed on Sat and Sunday. It would be interesting if there was a study comparing 35 straight days and 25 days with the week-end offs.

It's unfortunate for those still in treatment over the holidays. I saw our radiation dept. was closed Sat-Tuesday last week.


Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.
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I like your idea. They do close weekends, some on holidays, and don't have a full answer why, but cancer repopulation, angiogenesis, hypoxia may factor in, and tumor cells are different than regular cells, and sure studies were done finding this was the most effective way for tumor kill, so far, in most cases, since regular cells have a certain cell cycle, and death, but cancer cells don't, and that factors in probably too.There are other ways to deliver radiation that can increase boost dosage, more fraction sizes, hyperfractioned radiation, which is more than once a day, accelerated fractions for shorter duration over the course of the treatment with same dosage, so that may factor in for any planned lapses, type of treatment. Certain organs, structure, like skin, can recover in less than a day, and each has a maximum dosage level before unacceptable toxicities begin, so that is factored in. In some SCCHN they use split dosages (hyerfractions) 2x a day treatments, and even 6 day fractions in 6 weeks (accelerated fractions) instead of standard 7 or adding on a day towards the end of treatment to increase total Gy. There is brachytherapy that uses one time high dose or several weeks, or longer implant doses. I had HD-IORT..high dose Intraoperative radiation therapy, in addition to IMRT. IORT is done during surgery directly to the exposed tumor, which gives a one shot high dose of radiation from 10-25 Gy, which would take two to four weeks with IMRT.. Radiostatic Radiosurgery uses high dose in less time also, like in 5 treatments. They are working on radiation to be more effective with medications, even with Chemo, administered during radiation to make tumors more radiosensitive, less hypoxic, and others.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Stacey Offline OP
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Thanks to all of you. This has not been a good day. He went for RT today without waking me up or anything..he just left. I told the RO last week that he was not taking the meds as prescribed. The RO is on vacation now but the RO apparently emailed the MO that I was concerned about not taking them as prescribed plus the other concerns that I have stated in this forum. The RO was concerned too. My husband sent me texts today that they were running behind and it was pathetic. I replied that if he walked out then he reduced his odds of survival by 1 more percent. He's missed 5 days (sick) and (also Christmas and New Years Day but that was out of his control. He is in bed now because he threw up. I asked if had ever started taking the steroid med intented to prevent nausea and he replied that 'you already know the answer to that'. So I am going to let him be and I am going to the downstairs bedroom. I have my cell phone and my older son is upstairs. I don't understand the attitude and hardheadedness or why I can't invite someone in my family to our house (because I have no one to talk to even about the weather) or the being mad at me or refusal to sign a Health Power of Attorney. He has no will and I didn't ask for a living will. I would like a Health Power of Attorney tho. Goodnight and Thanks again.


Stacey (Caregiver to Husband)
Lymph Node Removed 10/12
Dx SCC MET 10/12
No Primary Tumor Found
IMRT x 33 (Started RT late 11/12)
CT Scan and PET Scan Clear 4/13


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Stacey,

Neither my wife nor I had the benefit of this site during my Tx. I was really stubborn during my Tx. I would lie to her about my meds, my cans of VHC, my water, my weight, etc. One day when I had lost my voice (that's happens later on in Tx) I was told by my docs that I needed to be admitted to the hospital for severe dehydration and pain. It was a Sat and I wanted to watch my college football game and that probably wouldn't happen if I did the hospital thing so I refused to go. My wife, my Vida, had had enough and she abuptly screamed "OK THEN JUST LIE THERE AND DIE!!!". With that she left the room and went downstairs. I knew that she would come back but as the minutes passed and turned into an hour I finally realized that I had to put my big boy pants on but too weak to get out of bed and with no voice I had to lie there and wait until she decided I had had enough. She FINALLY did come back; we went to the hospital; I missed my game; the docs told her I was within hours of my kidneys shutting down; and she saved my sorry butt.

At some point you need to be the nurse from hell and at some point he needs to put his big boy pants on.


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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Dear Stacey,
I am so sorry you are going through this. I don't know whether to tell you to be the caregiver from heck, or try crying and begging!! I know at one point Kevin was being so yucky at our mo's office that I got his coat, threw it in his lap, put my coat on and thanked the mo and nurses for their time. I explained that due to Kevin's attitude we were done with tx and were leaving and would not be back. I picked up my purse and headed for the door. Kevin finally said "wait, I never said I wanted to stop tx." He agreed to do what they were asking and apologized for being a jerk. We all agreed to let it go and onward we went. From there on out it was good. All this to say maybe you should call his bluff and just leave him be for awhile, being sure you explain to him that he WILL die, but if that was what he was choosing so be it. Maybe it will work. Then again, if he's too stubborn, maybe it won't!
Again, so sorry you are having to deal with this. Please know we, the other caregivers, understand how hard this is. We are doing all we can to save them, and they are being punk butts!! Just stinks!
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Similar to what PaulB mentioned, I was told it was very important not to miss planned treatment days during the first half or so of TX due to cancer re-population concerns.

As I understood it, later in TX, the likelihood of significant re-population decreases.

Also, in my case they delayed my start of TX due to equipment update issues followed by a weekend. They said they needed a minimum of four treatments in a row before a normal two day week-end break to assure these early-on treatments would be optimally effective.


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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Stacey Offline OP
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Thanks for your support. He finally took the steroid nausea med last night and threw up. (Since he did the same with the other nausea med he doesn't want to take them.) He tried all morning to eat jello and couldn't. Today is the first day that he has had food (gum up or ball up) in his mouth and he literally can't swallow it. I wanted to call the Doctor and he said no. He did have IV fluids after radiation but he threw up after we came home. He has had nothing to eat but that small amount of Jello and some water. I scheduled him for more fluids on Sunday.


Stacey (Caregiver to Husband)
Lymph Node Removed 10/12
Dx SCC MET 10/12
No Primary Tumor Found
IMRT x 33 (Started RT late 11/12)
CT Scan and PET Scan Clear 4/13


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Oh, my goodness, Stacey - I just had to chime in here as a caregiver and tell you that I can SO relate to what you are going through! It is so very difficult to know when to be soft or when to take charge and put your "Nurse from Hell" hat on! It has to be so horrible for a survivor - to have to face all the changes going on - not only with the body and it's reactions to all that is assaulting him but also the changes in daily living and lifestyle. When you are used to being in control and suddenly it seems like you have no control over anything it can be very depressing.

My son had a bad time with the nausea meds, too and had to have them changed several times. At one point he wasn't eating and I had to threaten to get his sister (a police officer with a gun) to come down and help me stuff him in the car for a trip to the hospital to get a tube installed for feeding. He started eating after that.

Paul also slept a lot and wasn't taking his meds on time so I made a spread sheet with doctors names/phone numbers and listed all the meds and times times and how much he was supposed to take. I made two copies � one to tack up on Paul�s refrigerator so he could check off when he took them and the time, and a copy for me so I could keep track of everything. It is very important to know everything that goes into his body and everything that comes out � and the quantities. This way you can answer the doctors� questions at appointments.

I�m really shocked at how your husband has missed take meds and is reluctant to get to his treatments. If he�s depressed over �losing his manhood�, then it�s time to �man up� and take back his manhood. He can start by taking control of his survival and do what it takes to get better. I would discuss how he is feeling with his Docs. Sometimes meds can have bad side effects. If your husband can be diligent in doing what he is supposed to do, he will start to feel better and will feel more in control.
Stacey � caregivers need caregivers, too and if you are fortunate enough to have family or friends come over to help or spend a little time with you, it can be so good for you. It will strengthen you so that you can be better able to help your husband on the tough journey he is on. Hope things get lots better for both of you soon.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Stacey, I am so sorry...as a fellow caregiver, I know how tough it can be. While my husband had his headstrong moments, sounds like yours takes the cake. For what it's worth, my attitude was that he could get as mad and annoyed at me as he needed to, I really didn't care if he even liked me through treatment, as long as he got his stuff done. I believe it's the right thing to do to use anything and everything you can, including the tears of our children, to motivate a patient through the toughest parts.

Re: mouth sores from fillings, we were given a letter to take to our dentist as well. Rather than using our regular dentist, we searched out a good onc dentist, who made the fluoride trays plus offered to make scatter guards to prevent just what your describing. The scatter guards worked well, but my husband started to get mouth sores around week 2. He added using a c-pap chin strap while he slept to keep his mouth closed and moist, along with rinsing with 1:3 hydrogen peroxide, pink mouthwash, mugard & caphosol. Made it through the rest of tx relatively sore free. Don''t think because you already have sores, there's nothing that can be done to improve the situation.

I know it's incredibly tough, made tougher by his attitude with family support, but do not let up. Come on here and vent as much as you need to, we understand and we're here for you. Ana

Last edited by AnaD; 12-29-2012 10:01 AM.

wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
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AnaD - I especially like your first paragraph. Sometimes we do have to use everything at our means to get our survivors moving forward no matter how small the steps. And Stacey - There was a day when I was so frustrated I exploded with: "Look, Paul - I am doing everything I possibly can to help you survive and get better - but I just CAN'T do it alone! - you have GOT to help me out a little here!!" I was ready to cry but I think he listened and I think it put some of the responsibility for his survival on him which gave him a measure of control. Stay with us Stacey and let us know how you both are doing.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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