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#44746 04-05-2005 04:56 PM
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netteq Offline OP
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I need some advice.
Please forgive the length, I am one of these people who feels compelled to build the watch.

This last week has been exceptionally difficult. Harry is having a very difficult time with the treatments and I need to know if anyone else has experienced this problem and if so, do you have any suggestions on how to deal with it. There are actually 2 parts to this question.

1. Since one week ago Thursday, Harry has been gripped by anxiety. It got so bad by Sunday the 27th that I called the doctor and he said that I could give him some of my Xanax. Just to show how warped I am, I have to take the max dose of Xanax just to get near an airplane so my prescription is for 2mg tablets. When I told the doc this I thought he was going to fall out of his seat. He said that most folks would be almost comotose on a dose like that. Anyway, he recommended that I give Harry 1/4 of one of my pills or .5mg. So I did. Well he went right to sleep and was very very groggy for a long time Sunday night. When Monday morning arrived and it was time to take him in to the hospital to begin his chemo he was essentially nonfunctional. I had to almost carry him to the car. Granted he has lost almost 25 lbs. but he is still at 160 and I was afraid he would fall. I have a bad knee so I was worried but I did manage to get him into the car. He immediately fell back to sleep. When we got to the hospital he was back to being anxious again. He kept telling me that the people had forgotten him and that they weren't going to call his name, etc. etc.

I assured him that everything was on schedule but he just couldn't let it go. Finally, they called him back and while they were making preparations for his blood test I walked down the hall to the other unit where his oncologist was at the time. I told him that I was concerned about Harry's condition and he decided to admit him but he put the chemo on hold so they could evaluate him. Within 2 days Harry was as low as I had ever seen him. He was asking for the Xanax like every couple of hours according to the floor nurses. He can't be still, he can't sleep much and he will do things that put him in danger of getting hurt. I am worried.

He was able to start his chemo on Wed. and yesterday I brought him home. As soon as we got home I took him upstairs and he immediately got into bed. He was exhausted just from the ride home and the walk up the stairs. He laid down and within a few minutes he was calling my name. I rushed up to him and he started telling me that he felt worse than he has ever felt in his life and that he thought he was dying.

I assured him that if there were anything wrong the doctor would not have discharged him. He wanted me to call the doc. He said he didn't want to talk to the doc he just wanted me to. I asked him if he wanted me to give him a Xanax and he said no. He said that he felt like reality was slipping away from him and he was afraid that if he took the pill he would lose it all and he was convinced he was going to die.

It took some talking for me to convince him to take the pill so that he could calm down and I was able to get him to sleep for a while.

This very long story leads to this question.... Have any of you experienced such anxiety and if so was there anything that helped you to get through it? Is there anything I can do that will make it any better for him? Will the anxiety subside once he begins to recover from the treatments?

2. Harry is losing his hearing. I have to yell at him now to get him to hear anything I say. It has gotten much worse over the last couple of weeks. Is this temporary? Will he get his hearing back? Can the loss be permanent? If so is there anything we can do to try to make it better or some doctor we should consult?

Thanks,
Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
#44747 04-05-2005 05:19 PM
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Cindy, I had some pretty bad anxiety the last few days of my radiation treatment. I felt like I was crawling inside and I could not sit still nor was I happy up and moving around. I couldn't lie in bed, I just felt like I would explode. I would wring my hands and pace which is not at all my personality. My husband took me to the ER the first night but the wait was so long that we came home. I spent the night walking the neighborhood with one of my grown daughters, and walking at a FAST pace. Around 4am she took me to a different ER and it was not crowded so I saw a doc. They gave me a shot of ativan and I was able to go home and sleep for a couple hours before my last radiation treatment. I felt ok until a few hours after my treatment and the anxiety took hold of me again. The doctor called in some ativan for me and put me on a graduated dose, meaning the dose kept getting less so that within a week I wasn't taking them anymore. I think I took them for a few days. My doctor said I was having withdrawal from a medication I was taking for nausea that I stopped taking abruptly and my nerves were shot. I also think lack of sleep was adding to everything. The end of treatment is the worst. Now it's uphill from here.
Good luck with it.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#44748 04-05-2005 05:42 PM
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netteq Offline OP
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I forgot an important thing...

While he was in the hospital the doc ordered a psyc eval. His antidepressant was doubled at that time and it was recommended that he continue the Xanax.

Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
#44749 04-05-2005 06:04 PM
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Cindy,

I can't help you on the anxiety question, but hearing loss can be a side effect of Cisplatin. With most people, the loss is temporary, but a small percentage of people are more susceptible and could experience a permanent loss. Are the doctors aware of the hearing difficulty? If not, make sure you tell them. If Harry has any chemo treatments left, perhaps he shouldn't have the Cisplatin. Some people also experience a buildup of ear wax from the RAD treatments, which can also cause a temporary hearing loss.

Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
#44750 04-05-2005 06:27 PM
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Cindy, If any symptoms got worse after a medication change or increase I would immediately suspect a drug reaction. In addition, hyperventilation is a common anxiety related problem. It will cause all kinds of strange sensations.

The hearing thing is definately something to tell the doc's about.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#44751 04-06-2005 12:29 AM
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Cindy, as far as the hearing loss, I had cisplatin as my chemo treatment and had permanent hearing loss. I was told that was common for cisplatin patients. The cisplatin causes the small hairs in the ear to harden and that is what damages the ability to hear. I have a constant buzz in my hearing and a loss of the high frequency range. This was measured by a hearing specialist and charted. So it is possible that Harry is having a hearing issue. I cannot comment on the other part of your post.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
#44752 04-06-2005 03:44 AM
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Cindy
Pete also had cisplatin and has now hearing loss and Tinnitus, although some times I think he uses it just to ignore me, now who`s paranoid !
You are having a extremely rough time Cindy and I really feel for you.
As my Grandmother used to tell me. " If I don`t pay you God will reward you ." Usually with a big smile on her face, her way of conning me into doing something for her. Not that she had to I would have stood on my head for her!
Hang in there Cindy

Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
#44753 04-06-2005 12:00 PM
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Hearing loss is also pretty common because the eustacian tubes get burned away during radiation and need time to regrow. This will cause a fluid buildup and will diminsh hearing somewhat, much like having a bad cold. It will pass. I had Cisplatin and my hearing actually, eventually improved. Tinnitus is pretty common as well but it too should get better. He should have had at least three hearing tests - one prior to treatment as a baseline, one at the midpoint and one after. Cisplatin has been known to cause permanent hearing loss but that adverse effect is fairly rare.

I took Zanax the entire time I was in treatment and for a time afterwards.

Cancer fatigue is a well known side effect of this type of treatment. When you consider that Harry is suffering from chemical burns, radiation sickness, dehydration, depression and malnutrition much of this is to be expected. My wife tells me that I was delusional during this time also. It's very disconcerting for caregivers to watch us go through this but it is practically a rite of passage. It was an entire year before my energy levels returned to somewhat normal levels.

He's doing pretty well to have only lost 25 lbs. I lost over 60. He'll bounce back but it seems to take a long time. Patience.


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)
#44754 04-06-2005 12:50 PM
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netteq Offline OP
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Hearing test? No one ever mentioned that. Should I see about getting him one now? Should I make an appointment with the ENT to check it out?

Thanks,
Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
#44755 04-06-2005 09:16 PM
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Hi, Cindy.
Poor thing...this does get really ugly, doesn't it? Tom, too, became very depressed, VERY dependent, very 'resigned' to the misery. He has tinnitis going into the treatments, and although we have not had a follow-up hearing test, it is evident that the cisplatin affected his hearing. I, too, am increasing volume just to get noticed.
I could not get him to take an anti-depressant for very long - I think he expected it to make him feel 'all-better' immediately.
The good news is that things ARE better now.He is 5-months post rad/chemo and 4 months out of surgery - - -he's gained a little weight smile , his beard is growing back smile smile , his attitude is MUCH better and energy levels coming up. He is looking forward to the walk-a-thon Saturday and we are becoming happy again.
Keep a stiff upper lip, Cindy, and pray hard. It will get better.
Love
Nicki


Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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