alone, lonely, and feeling very guilty about it

mswijiknyc said:

meds
right now, the ER is giving him dilotid and morphine.

This scares me.

Isn't that the stuff they give you at the end?

not the end
no, those are not necessarily end of the line drugs. Ken was given Dilaudid (hydromorphone)earlier in the treatment but it didn't agree with him well. Neither did the Oxycontin or oxycodone. Actually, I think it was just him. He was just really bad about taking his meds. That's one of the reasons they put him on the patch...then the stuff is there all the time.

Is Pat going to have to stay in the hospital for awhile? that would suck for Christmas.
Hope you are at least able to be at your own home in a peaceful environment.
Debbie

Pennymac02 said:

er
Just read your post. Praying for you and Pat. Dilauded and morphine are standard "big pain" drugs for cancer patients. Not necessiarily end of life medicine.

In my T&P April.......

In my T&P April.......

1Teresa said:

Im sorry
my mom hasnt been able to be left alone since just before Thanksgiving (before we had her dx of the cancer being back, all we knew is she was in pain and going downhill fast). Now, with the patch, she is moving around again a few times a day and getting dressed and only uses diapers for bedtime. For awhile she could only have button up shirts (because it hurt too bad to lift her arms, even briefly) but for the last 2 days she can do pullovers again and really, it is because of the fentynal patch. She has an Occupational Therapist, Physical Therapist and Home Nurse come in once a week on different days and now she will be getting someone to help her take showers too. Medicare pays for all these people and hospice has also been mentioned, but for right now hospice is something we put on the back burner to be decided after Cmas.

Maybe your husband can have the nurse and other professionals come in and help too. Are you working a job while taking care of him?

Fentynal patch
1Teresa, can you tell me what that patch is for? My husband has stage IV gastric cancer with mets to the bones that he has been battling since 6/21/10 (no symptoms and then BAM). He has really gotten bad the last two weeks with nausea, which keeps him from eating (already down to 136 from 186 so he can't afford not to eat). Is the patch for pain or nausea or both? Thanks.

neverquit said:

Fentynal patch
1Teresa, can you tell me what that patch is for? My husband has stage IV gastric cancer with mets to the bones that he has been battling since 6/21/10 (no symptoms and then BAM). He has really gotten bad the last two weeks with nausea, which keeps him from eating (already down to 136 from 186 so he can't afford not to eat). Is the patch for pain or nausea or both? Thanks.

Fentynal is for pain
It is controlled-release and therefore more effective with less total drug consumption. It is very handy for those that can not take pills (or won't) but it can also cause or increase nausea (which is what it did for my husband).

Since we just tried almost about every nausea drug known to man, I can probably give some advice. What is your husband currently taking for nausea, pain, etc.? (I'm asking for the whole list because some can interact. . . .besides, I'm both really interested in drugs and really nosey.)

1Teresa said:

Promozetholine
is a suppository that is used for nasuea that they prescribed. She was prescribed these when she was on the hydromorophone alone (Dec 1 when she was dx) but she still hasnt needed it. DrMary is 100% correct about everything. Mom has been getting naseaus on her toothpaste lately and I am going to try baking soda instead tomorrow.

Go Phenargan!
Yes, promozetholine suppositories (the generic for phenargan) are a life-saver when the nausea is too bad to keep down pills. Doug was in the hospital for 4 days to rehydrate and get IV drugs when he was so bad he couldn't even keep water down (this was his doctor's plan) - due to hospital protocol, he almost died (another, long story). Anyway, his doctor stepped in and over-rode the hospital and released Doug home, saying he thought we'd be better off there. The phenargan suppositories got us through the first night home and Doug was able to keep water down. We did some outpatient IV at another hospital and eventually found the right combination of drugs to stop the nausea (in his case, Reglan and Decadron, but that is not the best for everyone).

One hint - use disposable rubber gloves when inserting the suppositories. They often want to come back out. I thought THAT was the worst thing I'd ever done. . . then a week later, we had to deal with serious impaction. If he EVER doubted I love him before that, he knows now.

mswijiknyc said:

don't be
it is what it is - mantra of the house ha ha.

i got fired from my job right before his surgery. It's a blessing and a curse - I'm getting unemployment, but i'm losing my mind from being home all the time. But it seems that when I do leave, that's when he has problems.

I'm reading everything - good to know just in case

"that's when he has problems"
Same here - it seemed that every time I left him in the hospital with those words, "go home and get some rest, we'll take care of him" echoing in my ears, something happened. After the last one, I camped out on the recliner in his semi-private room. The hospital rules say this is not allowed. Since his roommate had his wife on the other recliner, I figured no one could object (they were our new best friends anyway, since he was an EMT and she kept an eye on Doug after the last "something" happened, until I could get back to the hospital, breaking all speed records).

Being home all the time was tough, too. I didn't lose my job, as I had a bunch of leave and they had to let me take it, but I warned them I was not coming back when it ran out if he was not a lot better. After a while, it seemed kind of natural to always be there with him. Going back to work was hell. He just recently went to see his doctor without me - the first time. It was weird for both of us.

It is what it is - not the worst mantra.

DrMary said:

Fentynal is for pain
It is controlled-release and therefore more effective with less total drug consumption. It is very handy for those that can not take pills (or won't) but it can also cause or increase nausea (which is what it did for my husband).

Since we just tried almost about every nausea drug known to man, I can probably give some advice. What is your husband currently taking for nausea, pain, etc.? (I'm asking for the whole list because some can interact. . . .besides, I'm both really interested in drugs and really nosey.)

DrMary, Thanks for getting back to me.
My husband is not currently taking anything for pain; he has more stomach discomfort (pressure) than actual pain so far. He is currently taking the following:
Morning:
Miralax
1 Dronabinol 5mg
1 Injection Arixtra 2.5 mg/.5 ml
1 Decadron 4mg
1 B1 100 mg
1 Prilosec 20 mg

Weekly 1 D3 50,000 unit

Noon:
1 Zofran 8 mg as needed (<3 a day)
1 B1 100 mg

Dinner:
1 Dronabinol 5mg
1 Prilosec 20 mg
1 B1 100 mg
1 Decadron 4mg

1 Pepcid AC as needed

Bedtime:
2 Senekot
1 Zyprexa 5mg

He also goes from diarrhea for two days (due to his new chemo) to 5 to 7 days of constipation.
Any information you can give me would be greatly appreciated.

Just an FYI, I have been reading the discussion board postings for a while. Last night after midnight mass, I went to a local shrine (have been a few miracles there) and prayed for your husbands as well as for mine. It was pretty cold at 1:30 AM, but tis the season for miracles and I will leave no stone unturned (medically, spiritually and nutrition wise). Take care all and I hope you all have a peaceful Christmas.

neverquit said:

DrMary, Thanks for getting back to me.
My husband is not currently taking anything for pain; he has more stomach discomfort (pressure) than actual pain so far. He is currently taking the following:
Morning:
Miralax
1 Dronabinol 5mg
1 Injection Arixtra 2.5 mg/.5 ml
1 Decadron 4mg
1 B1 100 mg
1 Prilosec 20 mg

Weekly 1 D3 50,000 unit

Noon:
1 Zofran 8 mg as needed (<3 a day)
1 B1 100 mg

Dinner:
1 Dronabinol 5mg
1 Prilosec 20 mg
1 B1 100 mg
1 Decadron 4mg

1 Pepcid AC as needed

Bedtime:
2 Senekot
1 Zyprexa 5mg

He also goes from diarrhea for two days (due to his new chemo) to 5 to 7 days of constipation.
Any information you can give me would be greatly appreciated.

Just an FYI, I have been reading the discussion board postings for a while. Last night after midnight mass, I went to a local shrine (have been a few miracles there) and prayed for your husbands as well as for mine. It was pretty cold at 1:30 AM, but tis the season for miracles and I will leave no stone unturned (medically, spiritually and nutrition wise). Take care all and I hope you all have a peaceful Christmas.</p>

Missed Your Post
I had looked for it and missed it anyway. I appreciate the prayers - we went to our service last night (our first in a long time) and your husband was in our thoughts as well.

You've got a pretty good drug plan there - however, Zofran is really more of a preventive drug than an as-needed drug; it is made even more useful when combined with the Decadron. We had Doug on it 3x day regardless (every eight hours) and I made sure the morning dose was at the same time as his morning Decadron (it seemed to be the best help for morning nausea and the radiation nausea). We actually used an alarm and did the Zofran/Decadron at 5 am - he'd then nap for an hour or so and wake up hungry. You might consider trying to make sure all of your doses are scheduled exactly - if they are 2x a day (like the decadron) make sure they are every 12 hours, etc.

Is the Zyprexa to help him sleep? I'm not sure that would be my first choice, but there may be other reasons for picking that over others.

In addition to Zofran every 8 hours on schedule, I'd ask for a better as-needed antinausea drug, such as compazine or ativan (neither of those should be taken within 4 hours of the zyprexa, but you can work that out schedule-wise) or at least phenargan, as a few of us have mentioned. (BTW, it was phenargan that might have saved my husband's life when he had the allergic reaction to the tube feeding in the hospital - he got me on the phone and then handed it to the nurse, who was resisting doing anything until the doctor showed up - all this time Doug could hardly breathe - fortunately, he had phenargan listed as an as-needed injection and I told her to give it to him right away as it is also a good antihistamine and is used for severe allergic reactions. . .it helped right away with the reaction as well as with the nausea.)

The dronabinol, zyprexa and compazine (if you get it) are all likely to cause constipation. It sounds like you are getting an idea of his pattern, so try to anticipate it. On the second day of "the runs" go up to miralax 2x a day and consider adding colace as a nightly pill. If no poop shows up after 2 more days, try a glycerin suppository. Then the old enema. I hope you don't get to the manual dis-impaction stage (they prefer to do that in the hospital - I had some experience in the matter, so we did it at home).

It is very likely that his constipation is also due to dehydration. Have you talked about doing daily or every-other-day IV hydration as an out-patient? This was a real life-saver for us, as it meant we could concentrate on getting drugs and food in by mouth and not worry so much about pushing water.

I see he is taking pills for acid reflux - taking a sip of water every 5 minutes helps both the reflux and the dehydration, and is usually tolerated even by a very nauseated stomach. Pedialyte or Gatorade, if he likes either, is even better, as you are replacing electrolytes lost due to vomiting and the runs. Baby sips, like baby steps, are the key here. Yes, it's tedious, but Doug viewed it as "his job" and kept it up.

"No stone unturned" - I had that attitude as well and I think having the doctors see how determined I was helped, as they knew they could ask us to try anything. Donabinol did not work for us, but if they had recommended directly smoking pot, my non-smoking husband would have found himself with his wife sitting on his chest, blowing second-hand weed in. (This turned out not to be necessary, and they also did not think it would help anyway - good thing, as I do not really hang with too many people who would even know where to buy the stuff.)

In general, it sounds like you are doing very well for him - sometimes it is a matter of wearing down the nausea with constant care. Make sure it doesn't wear you and him down first - Doug and I took turns being "the strong one" - just when I was about to give up, he'd say, "I'm starting to feel a bit better - I think this is going to work" and when he was sick of it all, I'd tell him that I had it all figured out (I didn't) and he should see improvement in about 8 hours or so. Eventually he did and then got to the point where all he did was get better. I did really feel like a miracle at that point.

I hope you have your miracle soon.

DrMary said:

Missed Your Post
I had looked for it and missed it anyway. I appreciate the prayers - we went to our service last night (our first in a long time) and your husband was in our thoughts as well.

You've got a pretty good drug plan there - however, Zofran is really more of a preventive drug than an as-needed drug; it is made even more useful when combined with the Decadron. We had Doug on it 3x day regardless (every eight hours) and I made sure the morning dose was at the same time as his morning Decadron (it seemed to be the best help for morning nausea and the radiation nausea). We actually used an alarm and did the Zofran/Decadron at 5 am - he'd then nap for an hour or so and wake up hungry. You might consider trying to make sure all of your doses are scheduled exactly - if they are 2x a day (like the decadron) make sure they are every 12 hours, etc.

Is the Zyprexa to help him sleep? I'm not sure that would be my first choice, but there may be other reasons for picking that over others.

In addition to Zofran every 8 hours on schedule, I'd ask for a better as-needed antinausea drug, such as compazine or ativan (neither of those should be taken within 4 hours of the zyprexa, but you can work that out schedule-wise) or at least phenargan, as a few of us have mentioned. (BTW, it was phenargan that might have saved my husband's life when he had the allergic reaction to the tube feeding in the hospital - he got me on the phone and then handed it to the nurse, who was resisting doing anything until the doctor showed up - all this time Doug could hardly breathe - fortunately, he had phenargan listed as an as-needed injection and I told her to give it to him right away as it is also a good antihistamine and is used for severe allergic reactions. . .it helped right away with the reaction as well as with the nausea.)

The dronabinol, zyprexa and compazine (if you get it) are all likely to cause constipation. It sounds like you are getting an idea of his pattern, so try to anticipate it. On the second day of "the runs" go up to miralax 2x a day and consider adding colace as a nightly pill. If no poop shows up after 2 more days, try a glycerin suppository. Then the old enema. I hope you don't get to the manual dis-impaction stage (they prefer to do that in the hospital - I had some experience in the matter, so we did it at home).

It is very likely that his constipation is also due to dehydration. Have you talked about doing daily or every-other-day IV hydration as an out-patient? This was a real life-saver for us, as it meant we could concentrate on getting drugs and food in by mouth and not worry so much about pushing water.

I see he is taking pills for acid reflux - taking a sip of water every 5 minutes helps both the reflux and the dehydration, and is usually tolerated even by a very nauseated stomach. Pedialyte or Gatorade, if he likes either, is even better, as you are replacing electrolytes lost due to vomiting and the runs. Baby sips, like baby steps, are the key here. Yes, it's tedious, but Doug viewed it as "his job" and kept it up.

"No stone unturned" - I had that attitude as well and I think having the doctors see how determined I was helped, as they knew they could ask us to try anything. Donabinol did not work for us, but if they had recommended directly smoking pot, my non-smoking husband would have found himself with his wife sitting on his chest, blowing second-hand weed in. (This turned out not to be necessary, and they also did not think it would help anyway - good thing, as I do not really hang with too many people who would even know where to buy the stuff.)

In general, it sounds like you are doing very well for him - sometimes it is a matter of wearing down the nausea with constant care. Make sure it doesn't wear you and him down first - Doug and I took turns being "the strong one" - just when I was about to give up, he'd say, "I'm starting to feel a bit better - I think this is going to work" and when he was sick of it all, I'd tell him that I had it all figured out (I didn't) and he should see improvement in about 8 hours or so. Eventually he did and then got to the point where all he did was get better. I did really feel like a miracle at that point.

I hope you have your miracle soon.

Thanks for the information DrMary.
I really appreciate you getting back to me with the suggestions and info. you posted. You have given me some new hope and I already started some of the suggestions. I began Mike on the Zofran with the Decadron tonight and told him we would be doing this on a regularly scheduled basis rather than just using the Zofran occasionally. I also started getting him to sip small sips of water and organic juices on a more frequent basis.
I was really worried these last two days as he was able to eat or drink almost nothing due to the nausea and the violent diaphragm spasms/hiccups he was getting any time he moved, ate or drank. These "hiccups" happened once before to him about two rounds into his first chemo regimine and they said they had never seen or heard of this before (has anyone reading the postings ever had these)? They seemed to be not as violent tonight, so he was able to get down a half of sandwich (lot of organic chicken) and 8 oz. of organic juice. This was in addition to him taking more frequent small sips of water/juice. I also told him that we would be talking to his Oncologist about trying something to control the nausea on an as needed basis.
The Zyprexa was prescribed based on a study of stage IV stomach cancer patients on the same chemo regimens Mike has been on so far to: 1) prevent long term nausea, 2) give a better night's sleep as he was waking up every hour and 3) to a small degree to take the edge off (more for 1 and 2 and to a much lesser degree 3).
As far as the hydration goes, he normally gets a bag of hydration each week based on his blood test results and how he feels. He refuses to go to the infusion center this week as they gave him an extra week off to work in the First Aid room at Ski Patrol (we've done this the last 16 years as volunteers as a way to give back to a sport that we both enjoy). He does not want to leave the mountains this week as he is worried that this may be the last time he sees his Ski Patrol family (and it really is like an extended family).
I am hoping that what you have shared with me can get us through this week so that Mike can do what he loves to do at the mountain. This would be a huge lift to his spirits as well as keep him in the fight mentally.
I also like the part where you would tell Doug you had it figured out and that he would see an improvement in 8 hours. You can be sure that I will be trying that one in the future as necessary. Thanks again and I am very happy that you did get your miracle. I do hope that everyone here also gets theirs.