Hello, husband was diagnosed with squamous cell tumor at base of throat in October. He was put on chemo and radiation quickly, then treatment stopped for 2 weeks (after 4 weeks of treatment) because he is a "strong responder" which I guess means it affected him more than others. He is to resume treatment after the weekend.

Just last week after loosing 30 lbs in 35 days, he was given a feeding tube. He had terrible pain, neck skin damage and bleeding from the mouth. He has been on Fentanyl patch (25 mg) every 3 days and I was told to put on 2 patches last time for pain control.

My issue is that he has completely changed. He is like a two year old. He can't think or reason, he can do the simplest things I might ask of him, like use his "magic mouthwash" or put on his shoes. I have to watch him constantly because he can get into trouble quickly.

This is very frightening to me, and I never expected it. Has anyone experienced this?
Thanks!

Xangira - You've come to the right place for the latest information and experienced knowledge from very caring people. My son did not have the exact same experience as your husband's but I'm sure others will be along whose experience more closely resembles what your husband is going through. I know it is so very frightening to see someone you love going through this. My son also had a very bad time of it. At one point, I was checking on him every few minutes and having to wake him up to make sure he took his meds because he couldn't seem to concentrate enough to remember anything. I found myself going into his bedroom just to make sure he was breathing! He did not have a feeding tube (which I wish now, he had) and the doctor gave him two "breaks", one which lasted a week. Have you checked with his doctor about what's happening with your husband or how this is affecting you? Sometimes caregivers need a little help too, in relieving the stress and anxiety. I ended up making a spreadsheet of everything that went into (and came out of) my son's body and keeping records of what meds and when he took them and noted any reactions. I included the names and phone numbers of the doctors, pharmacy and anyone, including the office assistants. I had two copies, one of which I tacked up on the refrigerator so that when I wasn't there, and my son was up, he could check off what he took and what time.

When you get a chance maybe you could include a signature line with your husbands' experience so far so others can know and respond better to any questions you might have (see mine below). Just go to the top of this page where it says "My Stuff", scroll all the way down to the Signature box and just put in whatever you like about your husband's treatment.

I'm so sorry this has been so rough on the two of you but you can get through this. Remember to take care of you, too. And let us know what is happening.

Hi Xangira

goodness yes, if you look to my early posts trying to describe Alex, it was along the lines of a tantrum throwing 2 year old!

However, there are some important differences. Alex's behaviour change was definitely chemo caused. At the time, Alex was undergoing induction chemotherapy (combination of three different chemicals). He suffered confusion and memory loss to the extent that he was unable to read a book, follow a plot line on a TV show or even continue a conversation with any wit or wisdom. There were times when he would respond to something I had said 5 minutes before which made for some interesting dialogue.

Whilst your husband may well be reacting to the chemo component of his treatment, you need to speak to the doctor about it as there are many other things that can cause this type of behaviour. Only a doctor with a knowledge of his history, age and a blood test in front of him can make an intelligent call on this.

Given your husband has been a "strong responder" so far, it might be best to get in touch with the doctor sooner rather than later (ie tomorrow not next week).

Good luck and let us know the outcome

KLo

PS also the fentanyl could be in play so a discussion with a pain management team might be also be worthwhile. Strong pain killers are classics for having this effect.

While many many male patients revert to childish behavior under the stress of TX, turning their caregivers into surrogate mothers, this sounds more serious. Can't hurt to mention it to his doctors. If he does not have any hippie history of dealing with drugs, it could be patch related as he is just too stoned to function. Perhaps he is a "strong responder" to the pain medication.
Since you live in California, my advice is to get your husband certified for medical marijuana and then go buy some liquid tinctures or edibles from a dispensary. The medical marijuana has no fatal overdose possible (unlike the patch) and does a much better job of controlling neuropathic pain which is a major component of treatment pain. Plus he won't be as addled or confused as with the opiates. It should let him reduce his opiate dose while still controlling the pain and let you get your husband back
Charm.

You havent mentioned how old your husband is. Not that this would be a major influence on his behavior but it could be related. Make sure you discuss this with his doctor. I agree it could be the fentanyl patch. It could be too strong. While taking this medication you must be very careful to follow all directions exactly. No long hot showers or baths, never cut, fold bend tear or rip the patch. These things can cause too much medication to be released. He will need to step down from this medication so make sure if he is being taken off it that he decreases the dosage slowly.

Good nutrition and hydration will help him to feel better. Every single day push for him to take in a minimum of 2500 calories and 48 oz of water. He can get hydrated at the chemo lab which will also help. Ask the doc about this.

Best wishes!!!!

With all the meds he's on, and the fact that he's lost so much weight, and the trauma of this whole thing it sounds like a combination of things. Make sure he is absolutely well hydrated - this can really affect you mentally I mean off the deep end mentally. People don't realize it. It also sounds like he's super sensitive to treatment, which means he is likely sensitive to other drugs, particularly pain meds. Everyone responds differently to things. For example I have never seen the pleasure in Oxy. Codeine made me throw up, morphine or hydromorph gave me weird dreams but didn`t kill the pain post op, and Oxy didn`t kill the pain either but it put me to sleep like a baby. My friend`s husband turned into an energizer bunny nightmare while on it... she actually hid them. Definitely discuss it with the dr. it could be an electrolyte imbalance related to hydration and malnutrition or drugs. hugs...

Thank you for all your responses, many good suggestions! We ended up in ER on Thanksgiving day, and indeed it was the Fentanyl patch, the two 25 mg (?) patches suggested. The nurse at the cancer center said that this med is their starting dose! But for Lee he was extremely paranoid and disturbed...So this med is now on his allergy list. It took two days but he came back mentally I'm happy to say.

Luckily, Lee has not had any significant nausea so far, most of his problems were pain from the treatment. The PEG tube is helping him get nourishment and water.

Tomorrow we start the last 11 days of treatment.

Whew! What a Thanksgiving day that was in the ER! Soooo glad your husband is doing better now and I'm sure it is a great relief for both of you. Hoping for things to go much better from here on out.

That's awesome. Glad he's back to normal!