| | Joined: Nov 2012 Posts: 58 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Nov 2012 Posts: 58 | He has had Vicodin previously and one Percoset today. The RO said they are very close to the brain stem (I think that's what he said) and that could be affecting him. My husband's initial systems within a few days of the first RT were light headed, head swimming and dizziness.
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
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Keep in touch when you can. Hopefully they will be able to get him stabilized quickly so he can come back home. Get some rest while/if you can.
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
| | | | | 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 | Poor guy!!!! Rads and chemo can be so difficult tp go thru for some people. I do think you are correct that location of treatment area can play a factor in how this will affect a person.
Sometimes the hospital is the best place for someone. But when it happened to me and I gut stuck in there nobody in the world could have convinced me it was for my own good. So glad you have found this site to help you with info and support. Hang in there!!! You arent alone.
Best wishes with everything!!!
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Unfortunately we do see a small percentage of us that do have problems almost form day one. I consider what I went through average but even so I made 2 visits to the ER and stayed overnight in a hospital twice. There is no disputing that this Tx SUCKS!! Let's hope they can get him under control. Tell him we are all pulling for him.
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.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Stacey Here is the link to the OCF main web page discussion of mucositis OCF mucositis It's really worth reading. Perhaps you will smile to know that when I joined OCF, I thought that mucositis was having too much mucous instead of mouth sores. Sounded right, but turned out to be wrong. so sorry this is hitting your husband so hard. You really do not need this. At this point, with being hospitalized so early and with dehydration and vomiting, he should consider getting a PEG put in. I found it easier than the nasal tube myself. Hang in there. We are all rooting for you and him. Charm
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
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Stacey, so sorry to read all this. It sounds as if he's really being put through the mill. I'm so glad that he has you there to lean on, and definitely spending a night the hospital where they can keep an eye on him and give him IV fluids, etc. was a good call.
My thoughts are with you.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Nov 2012 Posts: 58 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2012 Posts: 58 | They released him from the hospital today. He can't eat and drinks just a few sips. The RO thinks he may have a stomach virus but it is not a virus. He said that a feeding tube is not an option. He is on a Fentyl patch, Valium, Percoset and Zofron. He can't keep the pills down. They are going to start RT again on Monday at a lower dose (180 vs 200) and then we'll go straight to have an IV but I just don't think that is enough hydration.
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
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | That's good your husband is out of the hospital, and that he can resume radiation treatments. Could be many things for the stomach "virus" even thrush, Candisis, a fungal infection, from the Mucocitis, and hope that's the end of whatever it was. Good luck.
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
| | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: May 2010 Posts: 638 | Slap your RO - stomach virus indeed!!!
Has he not noticed your husband is undergoing radiation treatment that makes him sick AND is on pain killers that make him sick AND is probably not getting enough hydration that makes him sick??? Regardless of the cause, your husband needs to manage his nausea somehow so get help from someone who is prepared to do something. Also a pain management team might be useful if the pain meds are giving him a hard time nausea-wise.
Just a question though - did the doctor tell you why a feeding tube not an option, or was he referring to a PEG specifically (as opposed to a naso-gastric tube)?
Also, is it correct that there is no chemotherapy component in his treatment? Your signature shows radiation only. Was the lymph node removal described as a biopsy or was it surgery to remove all the cancer?
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | | 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 | Stacey, I have wondered from the beginning what type of facility your husband was being treated at. The doc sounds to me (in my own uneducated opinion) like he is not quite with it and not following the treatment guidelines for treating OC patients. He even disagreed with the other doctors right from the start about the primary mass. Makes me wonder just how many OC patients he has treated. This whole situation stinks!!!!! Im very concerned about your husbands intake! He will not be able to fight the cancer and the brutal treatments without proper nutrition. I cant believe this physician said a feeding tube was not an option for your husband. Not even a nasal tube? Hydration is NOT nutrition. Malnutrition can be a life threatening situation for your husband. I dont want to scare you or make you worry unnecessarily about things. His body is burning up calories at an incredible rate not only with fighting the cancer but also trying to heal from the treatments. This is why he needs a minimum of 2500 calories every single day. Even skimping a couple days can put a patient in danger of malnutrition. Ive seen this firsthand and watched hundreds of members struggle. The ones who turned their intake around did ok while the ones who didnt were eventually hospitalized. Ive never seen a doctor refuse a feeding tube for someone and say it was a virus. Nutrition and hydration will make or break a patient, without enough calories he will suffer more and feel terrible. His body wont be able to fight. Please talk to this doctor again and if necessary go over his head to the higher ups at the facility. This doc works for you and everybody has a boss! Its a hard situation to be in, a caregiver wears so many hats. Of course all patients and each situation is slightly different and unique. I have not seen doctors change the radiation dosage due to a patient having a difficult time. I have seen a doc cancel a couple of the last treatments for only one or 2 members. This situation is NOT the usual one at all. Many here including myself pretty much had to suck it up and continue thru til the end even though we were very ill. I ended up hospitalized several times for malnutrition and dehydration and that was with a feeding tube. I felt so bad I actually thought I was dying. Once I was so sick I couldnt even walk, my son pushed me in a wheelchair and the doc took one look at me and admitted me. This is why I am so concerned about your husbands situation, I am hoping to spare him and your family from going thru what I did. Wishing you and your husband had an easier time of it!!! Top Cancer Centers Treatment Protocals
Last edited by ChristineB; 12-16-2012 12:48 AM.
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 | | |
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