Awful week - long post!

bonefamily

Hello all! We have been lurking here for awhile but after the last two weeks, need to compare notes with you and see if there were any similar experiences. I'm an RN, so I was hoping that would give me a leg up on handling things, but that has not always been the case. Wife first, nurse second.

My husband was diagnosed in the spring with SSC BOT stage III with bilateral lymph node involvement. Three on the right and one on the left plus some slight 'bright spots' supraclavicular.

He did nine weeks of induction chemo with cisplatin and taxol and is now almost at the end of concurrent rads and chemo. He has completed 27 of 31 rads and was supposed to be done on 9/12. We hit some big rough spots and now we hope to be done 9/20.

The first setback was the PEG tube insertion. He made it all the way to almost the end maintaining his weight with soft foods and shakes. He woke up the Tuesday after Labor Day unable to swallow pills any longer or even water. He had been struggling with the horrid mucus and lack of saliva and on meds to help, but still was not sleeping properly. Up every 30-45 min to spit and try to get some moisture in his mouth. In the hospital for the PEG insertion, they changed up his mucus med to robinul and added a scope patch. He started having some mental status changes while still in the hospital that we all thought were sleep deprivation related. On our first night home - things just got worse. He could not rest, started with more bizarre behavior (taking mirrors down, rearranging things, falling asleep standing, etc.) I took the scope patch off and things improved somewhat, but he still was not sleeping. After I discovered he got the car keys and went looking for a Sunday paper, we were back at the doc. We cut down on the ativan he had been using for mask related anxiety and added haldol at night to try to knock him out and decrease the rambling behaviors. Didn't touch him sleep wise, but he did calm down and return to almost normal mental status. We only used the haldol four nights. I don't like that med, and it did not seem to make any significant improvement worth the risks.

This week he started having cycles of sweats and tremors that looked like his panic attacks, just ramped up. We went for his normal md appt pre chemo on Thursday and he was in the midst of the worst one yet. Felt horrid, sweating buckets, and shaking almost too hard to stand - but no fever. She took one look and walked us down to the ED. Fear was either sepsis or a serious drug reaction (neuroleptic malignant syndrome). We got the full work up, blood cultures, cardiac enzymes, chest xray, etc. All normal, or as close to it as an oncology pt gets. Some slight cloudiness in the right mid lung, but nothing to explain the extent of his misery. I insisted that this was what he has been dealing with for a week for the hours leading up to his pre-rads ativan dose and that he always improves after rads are done. They listened and a dose of ativan knocked out all the symptoms. Shakes stopped and so did the sweats. We stayed off all the meds except senna and ativan and things have improved.

He still cycles with milder sweats and tremors but they are improving and he is sleeping! Actually slept 7 hours straight last night. The mucus is returning with a vengeance, but his mental status is sooo much better. After all has settled down, we feel that polypharmacy mixed with anxiety was definitely the problem. The main culprit may have been the reglan he has been taking for about 6 weeks to keep the nausea at bay. So we are stripped down to just ativan, senna, fentanyl patch and dilaudid for breakthrough pain.

It's so hard. On one hand, I am so happy he is better and on the other I am wracked with guilt that the meds were the problem. Sleep deprivation and med overload look so similar, it was impossible to tell where one started and the other took over. Didn't help that I was not resting much more than he was.

So, sorry for the long post, but just wondering if there are similar stories out there? And a warning that if you are beginning this journey, be aware of the cumulative effects of the meds and treatment!

Four rads and one chemo to go. Come on Thursday!

hwt

My goodness
Your husband has had his share of reactions. You mentioned the fentanyl patch but not as possible culprit. I had a 25 patch and had it increased to 50 at which time I shook so bad I could not even write my name. I shivered and sweated. Immediately dropped back to the 25 patch and it all stopped. Never an issue with sleep.
Hope you find the right combination for your husband. Thursday, in itself, will help his state of mind.

Sam999

hwt said:

My goodness
Your husband has had his share of reactions. You mentioned the fentanyl patch but not as possible culprit. I had a 25 patch and had it increased to 50 at which time I shook so bad I could not even write my name. I shivered and sweated. Immediately dropped back to the 25 patch and it all stopped. Never an issue with sleep.
Hope you find the right combination for your husband. Thursday, in itself, will help his state of mind.

Oh! Man! Your husband did
Oh! Man! Your husband did have a rough time. We are always told everyone is different and reacts to things in a different way. Hope things turn around for him soon.

I went from 25 mcg fentyle patch to 175 mcg but luckily did not run into any problems. My doctor started me on patch long before i needed them and slowly increeased it.

Sam

phrannie51

WOW.....what a story of
setbacks and reactions...I've been on this site for almost 6 months and have never heard anyone have this hard of a time...my heart goes out to both of you. Regardless of how powerless you have felt ("wife first, nurse second")...your husband is lucky to be in your hands, where there is some knowledge of what might be going on.

My husband would have been storming the Emergency Room in the middle of the night if I'd started removing mirrors, hiding things, or taking unannouced drives....it would have freaked him out.

p

Pam M

Thank You For Sharing
Guilt?? Although you're a medical professional, it sounds like this is not your area of concentration. AND the people who DO have this as their area of concentration saw your husband's initial game plan as the best course of action. In my book, you should not feel personally guilty at all.

I'm glad, though, that you're sharing your story here. I know that for many of us (who, luckily, didn't have to go through what your husband did), the fear that we were taking too many meds visits from time to time. You've given folks who may be in the thick of it now something to keep in mind.

Billie67

phrannie51 said:

WOW.....what a story of
setbacks and reactions...I've been on this site for almost 6 months and have never heard anyone have this hard of a time...my heart goes out to both of you. Regardless of how powerless you have felt ("wife first, nurse second")...your husband is lucky to be in your hands, where there is some knowledge of what might be going on.

My husband would have been storming the Emergency Room in the middle of the night if I'd started removing mirrors, hiding things, or taking unannouced drives....it would have freaked him out.

p

Reglan can be as you know a great drug however, it can have crazy side effects. It made me very"off" I couldn't sleep for nothing, got the shakes but not my whole body, just my insides if that makes sense. I had tons of sweats and now that I'm 12 weeks done with treatments I realize I've lost about a month and a half of time. I can hardly remember who came over, brought food, called....it's weird. Once I got my PEG removed and stopped taking Reglan (I was taking it to help push the food thru my stomach) I almost immediately started to feel better.
For pain I also used fentynal patches with dilaudid for break thru pain. I'm small so my patches were only 11.5, 25 was way too strong for me I got so sick from it. After treatment I was able to take just dilaudid especially at night and it did help dry up some of that mucus. At least enough that I could sleep better without choking on so much of that junk. It also helped a lot with the pain from the burn on my neck.
I hope your husband will continue to improve and that you can get some relief too. I think the caregiver has it harder in someways.
I know it's hard to picture right now but this whole crazy journey is almost finished for you. Soon you will be on the road to recovery :-)
Take care,
Billie
P.S. Keep us posted

ToBeGolden

Don't be sorry for the long post....
It was instructive. Too bad medications can't be started one at a time, and before they are needed. (Crazy idea.) So the meds could be adjusted to the unique responses of the individual patient.

ditto1

ToBeGolden said:

Don't be sorry for the long post....
It was instructive. Too bad medications can't be started one at a time, and before they are needed. (Crazy idea.) So the meds could be adjusted to the unique responses of the individual patient.

Hope
things go smooth from hear on out. Meds such a blessing but can also be tough at times. Im Bot iv multiple lymph nodes, 5 weeks out of tx so waiting to see if it did what we all hope and I can join the NED club. I did not take alot of pain meds, but the ones I did sure were helpful. So God Bless you all and hope it only gets better from here.

Tim6003

ditto1 said:

Hope
things go smooth from hear on out. Meds such a blessing but can also be tough at times. Im Bot iv multiple lymph nodes, 5 weeks out of tx so waiting to see if it did what we all hope and I can join the NED club. I did not take alot of pain meds, but the ones I did sure were helpful. So God Bless you all and hope it only gets better from here.

Hi Bonefamily ...
Wow....tough time for sure.

I was base of tongue stage III with one lymph node.

I had Erbitux and Rads only for treatment .....the mucus for TERRIBLE ...harldy any sleep...I felt bad, very bad 2 weeks before my last rad treatment and 6 weeks after that. You can look at my neck burn pictures on my expression page, pretty bad burns. I took 6-7 Narco a day and wore two fentynal patches (25mcg and 12mcg) as well as took advil as needed.

Sleeping in a recliner / or upright position is the only way to go if you can...
A suction machine has worked for many on here, I never had one but from the posts I read I wish I had

All I can offer (as you know of course as a nurse) is it will get better...

Whispered a prayer for you and your husband that things will get better faster ...and that all this will result in his NED

Best,

Tim

CivilMatt

take one and call me in the morning
bonefamily,

Wow, my wife had it easy (kind of). I am sorry for the bad drug interaction and I am glad it sounds like you have it figured out. Other than having stage IVa, scc, bot, hpv+ & 1 lymph node, my adventure was pretty uneventful other than standard side effects. Get up. Take 1 Lorazapam, get radiation, lay in recliner and fall asleep (35 times + chemo).

After this week your husband’s side effects should peak and you can both be on the final trip to healing. Here’s hoping for a remaining smooth ride.

Best,

Matt

bonefamily

CivilMatt said:

take one and call me in the morning
bonefamily,

Wow, my wife had it easy (kind of). I am sorry for the bad drug interaction and I am glad it sounds like you have it figured out. Other than having stage IVa, scc, bot, hpv+ & 1 lymph node, my adventure was pretty uneventful other than standard side effects. Get up. Take 1 Lorazapam, get radiation, lay in recliner and fall asleep (35 times + chemo).

After this week your husband’s side effects should peak and you can both be on the final trip to healing. Here’s hoping for a remaining smooth ride.

Best,

Matt

Getting better
Thanks for the encouraging words everyone! He is so much better. He was able to do his own tube feeding -with me coaching- this morning for the first time. He isn't ready for handling the meds yet, his judgement isn't fully back and I'm afraid he may OD himself until the rest of the 'fog' clears, but we are getting there!

We are going to talk to the doc about the fentanyl patch and see about stepping down to 75mcg from 100mcg. The sweats really bother him and that is the only culprit left with that side effect. He is only using the Dilaudid once or twice a day now, and the decrease may be easily tolerated.

Thanks again!

Barbara B

bonefamily said:

Getting better
Thanks for the encouraging words everyone! He is so much better. He was able to do his own tube feeding -with me coaching- this morning for the first time. He isn't ready for handling the meds yet, his judgement isn't fully back and I'm afraid he may OD himself until the rest of the 'fog' clears, but we are getting there!

We are going to talk to the doc about the fentanyl patch and see about stepping down to 75mcg from 100mcg. The sweats really bother him and that is the only culprit left with that side effect. He is only using the Dilaudid once or twice a day now, and the decrease may be easily tolerated.

Thanks again!

Fentanyl Patch
My husband was diagnosed with SCC BOT and at week six of treatment was in pretty bad shape. They suggested the fentanyl patch but he had a terrible reaction with some of the behaviors you are describing.

They took him off the fentanyl and used oxycontin and morphine for the break through pain. He was groggy and I wouldn't trust him with his own meds, but he was lucid. A definite improvement! He also slept in a recliner for about 3-4 weeks. It seemed to help with the mucus.

Hang in there. Barbara