| | Joined: Sep 2013 Posts: 20 Member | OP  Member
Joined: Sep 2013 Posts: 20 | Besides taking breaks and caring for myself, what are some best practices that any of you have used when dealing with a hyper, steroided/chemod up love one? He is not himself. Cold, rude, needy, critical. I haven't lost my cool, yet but man, it's hard to be this patient. He isnt seeming sick, just hyper. Dr said today he has shingles, but youd never know it by sprnding time with him.. i want him to just relax and rest!Thanks so much in advance.
Last edited by auditie; 09-17-2013 02:31 PM.
CG to husband-
1/2013 lymphoplasmacytic lymphoma found
5/2013 1st round chemo stopped due to hole in hard palate.
6/2013 SCC found in maxillary sinus/hard palate.
7/2013 Removed tumor from palate + neck dissection T3NO.
Has palatal obturator. Both smokers. Both want to quit. Will be done with 35 rounds of radiation + chemo + erbitux by October 10. Hemoglobin count up from 3 to 13! Lymphoma under control
| | | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | Hi Auditie,
Talk to the team immediately and have a psych nurse come in to evaluate. I had a reaction to the steroids given to me to counteract nausea and side effects from chemo. It was akin to "roid rage". My "don't do it/say it button" got turned off and I thought, said and did things that were totally not me. The worst part was I didn't really realize what was happening. Those around me certainly did though!
When my chemo nurse saw me (about the 3rd week in), she knew something was wrong. They called in the psych nurse and it was determined I was in psychosis. I was taken off the steroids immediately and given a med to bring me down. It took about a week but I got through it.
Unfortunately being off the steroids allowed the side effects to kick in stronger but I got through that as well.
Good luck! Positive thoughts and prayers
"T"
57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
| | | | | 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 | Have the doc keep a close eye on him.
I had a reaction to the anti-nausea medicine and would pace the floor. I was exhausted and could barely walk after doing it for hours. It turned out to be the compazine which didnt agree with me.
Do you have anyone who can hang around for a couple hours to give you a break and get out of the house? Done forget caregivers have a rough job and need to take care of themselves too.
Good luck!!!
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: 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 | Ditto what Mr "T" said. I had a horrible reaction to Dexamethasone and morphine together. I even knew from the inside nothing made sense. It was scary. Even tried to spit out of the car by opening the car door at 80 mph. I was afraid I would Luke in my car and wanted nothing to do with that!
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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | [quote]I had a reaction to the anti-nausea medicine and would pace the floor. I was exhausted and could barely walk after doing it for hours. It turned out to be the compazine which didnt agree with me. [/quote]I had the same thing but never thought of it as a side effect. My wife would be annoyed that I was always "wondering around" the house. It never dawned on me that that restlessness was a side effect. It soon passed along with the many other side effects. Oh well, sometimes what you don't know can't hurt you. lol
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Sep 2013 Posts: 20 Member | | OP Member
Joined: Sep 2013 Posts: 20 | You all are great! It means a lot to get such quick replies. Uptown- we just came home from the prosthodontist. I kept thinking of you in your car on our 3 hr drive home - as he crouched in the seat well looking for small pieces of a phone accessory. Fishmanpa- Thanks for being so direct. I really appreciate it and agree. Christine- He does give me plenty of alone time to decompress when I need it //Just an update: I talked with him about the steroids and he totally agrees that we need to address it w/ doc ASAP. At the same time, he expressed that he likes the extra energy and I know that means he's going to encourage the doctor to leave things as is. Meaning.. He'll ask the doc ?s the extent of "is it safe?" And then tell me I worry too much... So it'll be interesting times if I have to corner the doctor privately and put my foot down. We will see!
CG to husband-
1/2013 lymphoplasmacytic lymphoma found
5/2013 1st round chemo stopped due to hole in hard palate.
6/2013 SCC found in maxillary sinus/hard palate.
7/2013 Removed tumor from palate + neck dissection T3NO.
Has palatal obturator. Both smokers. Both want to quit. Will be done with 35 rounds of radiation + chemo + erbitux by October 10. Hemoglobin count up from 3 to 13! Lymphoma under control
| | | | | Joined: Sep 2013 Posts: 20 Member | | OP Member
Joined: Sep 2013 Posts: 20 | He hit me and screamed at his 93 year old mother for 2 hours straight tonight. Calling the doctor in the morning. This is definitely not like him. You all were dead on.
CG to husband-
1/2013 lymphoplasmacytic lymphoma found
5/2013 1st round chemo stopped due to hole in hard palate.
6/2013 SCC found in maxillary sinus/hard palate.
7/2013 Removed tumor from palate + neck dissection T3NO.
Has palatal obturator. Both smokers. Both want to quit. Will be done with 35 rounds of radiation + chemo + erbitux by October 10. Hemoglobin count up from 3 to 13! Lymphoma under control
| | | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | Dang! I'm sorry...That's not good AT ALL! Physical or verbal aggression, regardless of the situation is not warranted!
I was driving back from treatment one day when this was affecting me and a guy (a really BIG guy) walked out in front of our vehicle while texting on his phone. I had to slam on my brakes and swerve to avoid hitting him. I pulled over and my girlfriend/caregiver had to physically stop me from going after him. I was also cursing like a sailor and I don't have a potty mouth! He would have crushed me like a bug too!
Positive thoughts and prayers
"T"
57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
| | | | | Joined: Sep 2013 Posts: 20 Member | | OP Member
Joined: Sep 2013 Posts: 20 | Just an update- steroids have been reduced by 1/2 last week and he's been doing everything at his normal pace again. No more aggression and he still has a "normal?" amount of energy. He's also eating better and getting better rest as he's not as wound up anymore. Huge change. I feel really fortunate for this advice.
CG to husband-
1/2013 lymphoplasmacytic lymphoma found
5/2013 1st round chemo stopped due to hole in hard palate.
6/2013 SCC found in maxillary sinus/hard palate.
7/2013 Removed tumor from palate + neck dissection T3NO.
Has palatal obturator. Both smokers. Both want to quit. Will be done with 35 rounds of radiation + chemo + erbitux by October 10. Hemoglobin count up from 3 to 13! Lymphoma under control
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | So glad your Sweetie is back and doing so much better!
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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