So Hard

Hey guys. My husband has had a really tough last few days. His last "second round" of chemo was on Monday. His last radiation tx is Nov 19th.
His esophagus is so sore he can hardly swallow anything. He is trying so hard to eat. In the beginning he was pretty much surviving on milkshakes, ice cream and such. Now it hurts to swallow that. The dr. gave him Dukes Miracle Mouthwash which he is suppose to swallow a teaspoon an hour before eating or drinking but he says it is not working very well.
All day yesterday he ate 1/2 can of chicken noodle soup and drank Boost.
Monday after his chemo he started getting sick. We were in the drugstore to get his presciptions filled when he said 'I have to go'. I followed him outside and he was so sick he could not even gag. He just held his head over and opened his mouth and produced only clear water. Diarrhea followed after all this time of being constipated.
It just kills me to see him so broken. I just cried. I try so hard to be strong for him but sometimes it just gets the best of me.
I have connections so I have made a couple of phone calls this morning to get a bag of Normal Saline and an infusion set. If I can get a liter of fluid in him it may save him an ER visit for fluids. (Don't panic......I am experienced in IV Therapy). I would not even attempt it if I were not.
He was dehydrated on Monday also.......which he gets fluid with his Cisplatin also but he really needed them this time !! His orthostatic BP was indictive of dehydration so they would have give him Normal Saline even if he was not scheduled for chemo.
Does anyone have any suggestions on what he might can swallow. I have suggested, slushys, popsicles or ice chips and he just makes a face at me.
Hugs
Faye

By pattyp1
Posted November 5, 2008 at 1:38 pm
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hey, Faye,
you need to get this information to the onc nurse right this second. a while back, we talked about how cisplatin can be a "little" rough on some people - it's a great chemo, but it's a beast - and when dehydration gets going, it's kind of rough to reverse and is real hard on the system - and can land his butt not only in the hospital, but upstairs with lots of monitors... before you hyperventilate, they have other stuff they can substitute that doesn't knock you flat on your butt (carboplatin, for example). of course, it's the doctor's call, but he needs to know there's a problem...and he should know that cisplatin is just plain evil for some people.

regarding the food - at this point, anything you can get into him will be helpful - and also, try cornchips or potato chips - they will help keep the water inside of him

the question you need to ask the onc nurse to get her attention is "Is this normal?" and then ask for help. My guess is that you'll be into see the onc pretty quick.

prayers and hugs, girlfriend
Pat

By Scaredwife
Posted November 5, 2008 at 2:21 pm
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Thanks girl. He just finished chemo again on Monday. He will go back in to see the Dr. on Monday again.
They know he is having a really hard time that is why they gave him the "miracle mouthwash" but he says it is not helping.
I just called a few minutes ago to check on him and he says he ate 1/2 cup of ice cream for lunch today.
Thanks.
Hugs

By pattyp1
Posted November 5, 2008 at 3:41 pm
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hey, Faye,
the miracle mouthwash is actually a concoction the pharmacist blends up - it has maalox, benadryl, something else, and lidocaine in it. maybe the onc nurse could speak to the pharmacist and have the % of lidocaine (it's a numbing agent) beefed up.

also - warm salt-water gargles will calm the back of his throat.

also - thinking about it - it seems that there is a common thread in what he'll put down him - creamy textures - how about trying him on fine-curd cottage cheese, jello, yogurt, tapioca, pudding, tomato soup (barely warm) and chicken noodle soup (also barely warmed). maybe food that slides down on its own will help....

hope you both feel better soon....
hugs
Pat

By Scaredwife
Posted November 5, 2008 at 4:00 pm
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It seems now that the easiest thing for him to swallow is the chicken noodle soup. He puts a spoonful in his mouth and leans his head back for it to slide down.
The problem is not really his throat. It is in the middle of his nipple line (which is where the cancer is).
I will call the oncology nurse.
hugs
Faye

By simplyklb
Posted November 5, 2008 at 5:36 pm
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Hi Faye,
My mom is getting Cisplatin/VP 16. It's really harsh. She is also getting radiation. She has been mainly tired so far. And her counts have been impacted.

I have to get Mom to take her blood pressure so I can see if she is dehydrated or not. If her BP is low, then I need to have her schedule an appt. for fluids tomorrow or Friday.

Kristi

By peyz33
Posted November 5, 2008 at 6:00 pm
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Faye - first of all - Cisplatin is a very STRONG nasty drug - I know - I had it every friday for 16 weeks - it was hell - but it works - so just tell him to hang in there - ugh 0 I remember how I felt - it's terrible - I'm surprised he has the runs - I was severly constipated - and yes - FLUIDS will make a HUGE difference - I was 2 times to the ER for dehydration. Praying for you both...
Karen

By Marg
Posted November 5, 2008 at 6:49 pm
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Hi Faye,
There was a time when Mike didn't want to eat and made a face at everything I suggested. I don't know if this will work for you, but I finally just said, "I know you don't want to eat, but do you want to die? If you don't force yourself to eat, you are going to die." It worked with Mike. He makes himself eat at least three times a day, whether he wants to eat or not.

Hang in there,
Marg

By drawing3d
Posted November 6, 2008 at 7:03 am
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Faye;

Forget the miracle mouthwash stuff...it doesn't go down far enough to work. He is in pain around his esophagus - he needs a pain killer - I know because I was in exactly his shoes. This pain will last for weeks so he needs a long term solution so he can eat and drink HEALTHY foods or his body will be very weak and recovery will be very tough. There is a ton of pain killers available, from hydrocodone liquid that he swallows, to pills to patches. I had them all; he can't swallow a pill right now (or later) but I crushed them up and "buried" the powder in a tiny bit of soy ice cream so it would slide down. Be careful with any food that is scratchy; it causes further damage.

This is a critical time for him to strengthen his body...I cannot emphasis foods and liquids enough - of the right sort. He needs alot of protein now so he can heal; he also needs fresh fruits, vegetables, whole grains - sunshine and yes, exercise. So get him hydrated, stop the pain so he can eat healthy foods and recover then get him on his feet and moving...but above all, remind him that this phase WILL PASS.

God bless,
Ellen

By flatbeddriver
Posted November 6, 2008 at 7:20 am
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i had trouble swollowing somebody here said to try oatmeal as it coats the throat i made mine soupy and got to admit it went down pretty good

By Scaredwife
Posted November 6, 2008 at 8:23 am
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Guys thank all of you so much for your suggestions and sharing your own stories. It really does mean so much too me.
This is where he is as of this morning. My first question to the doctor was "How is mouthwash going to help his esophagus pain?".........Well he is suppose to swallow the mouthwash.
He has been doing that with NO relief. I called the oncology nurse yesterday and spoke with her. She told me to try and talk him into coming in this morning and letting her weigh him and maybe give him some fluids.
He finally agreed to that (last night). He had about 1/4 cup of soup last night (which came up about 15 seconds after it hit his stomach). That was all the nutrition he had other than the "Boost" drinks.
He had no nausea/vomiting after the first round of chemo but it is horrible this time. There is really nothing in his stomach to come up so it is mainly clear fluids. He has been severely constipated. There is just no describing it until Monday when diarrhea hit the same time as the nausea but that was the one and only time. He has not had a bowel movement since then.
This morning he tried to drink his coffee and it burned him so bad he could not drink it. The other day he wanted cream and sugar in it and he said he seem to go down a little better like that. I tried that this morning but it did not help.
I gave him his "mouthwash" and as soon as it went down it came up.
He has decided now that he does not need to go see the nurse today that he will wait until tomorrow.
I took his vital signs last night and his orthostatic BP is ok. His BP in general is a little low for him but that has been the case for a month now.
I do have a bag of Normal Saline and and IV setup now so I told him he EITHER goes and sees the nurse today and let her evaluate him or I WILL hang a bag of fluid to his butt tonight to prevent him from becoming dehydrated.
This man is the most stubborn creature that I have ever met in my life.
I told him this morning that I know he cannot just "lay down and die" BUT.........the body does need rest to heal also.
He has not missed one days work yet! He has left earlier a couple of times to go home when he felt sooooooo bad. He went home a whole hour early yesterday.
He just called and said he was NOT going to see the oncology nurse today that he was going to try to eat a little better today and if he could not he would go see her tomorrow.
Thanks guys
Big Hugs to you all

By simplyklb
Posted November 6, 2008 at 10:23 am
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He needs fluids. He will get dehydrated really bad before he knows it.

I am trying to get my mom an appt. with the onc's office tomorrow for fluids. I know she has an appt. on Monday to get them but she needs fluids before then.

Kristi

By liznj226
Posted November 6, 2008 at 10:38 am
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Faye,
Not eating is one problem but it seems like he can't keep down what he is eating. Is he on any anti-nausea meds? Also, ask the doctor if something like Prevacid or Nexium would help at all. My mom had minor esophagus burning but it did help for her.

Boost is good but there's also a whey protein powder from nutrition stores (I think Wal-Mart has it also) that you can mix into a lot of things. Mix it into ice-cream, oatmeal, cream soups, etc. Someone on this site suggested they did well with pancakes also. It's worth a try to see what works.

God Bless,
Liz

By Scaredwife
Posted November 6, 2008 at 10:48 am
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Thanks guys. To answer your question yes he is on anti-nausea meds but for the life of me I cannot remember what it is right now. I thought I had all his meds written down but I don't have that one.......it begins with a "C".
It will not take it until AFTER he gets sick.............he is one stubborn human being.
Hugs

By simplyklb
Posted November 6, 2008 at 11:27 am
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My mom takes Compazine, Ativan, and Kytril (a cousin of Zofran) for nausea. Kytril is really expenesive. Fortunately Mom's insurance covers it.

Kristi

By jazzbo
Posted November 7, 2008 at 3:36 pm
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Hey Faye, tell that husband of yours to get on the computer. I'd really like to chat with him for a few minutes. I'm a 9 yr survivor of 3A NSCLC. If I wasn't playing hooky from work. No I'm just hiding in my office. If you don't know by now I could be your husbands twin and there are a lot of us out here. I only missed a handful of days from work with the chemo/ radiation. I do remember the pain from swallowing. I went to work we men have to be the strong ,silent , warrior types . We're not allowed to be sick. WE CAN HANDLE ANYTHING!So I thought until the surgery that knocked me on my ass. Pardon my french. I am still amazed my wonderful wife of 27 yrs is still with me. It was so much harder on the caregiver than the patient. He loves you I'm sure of that or you would have left a long time ago. Some of us(men) have to have the shxxxt out of us before we can see what we need. I have a feeling he will come around soon. With me it was the first time I went to see the doc and he said you've been like this for 2 weeks. All you had to do was come in and I would have given you this and you would have been better in hours. It could have been a sugar pill for all I know but in a few hours I felt better. I learned that maybe just maybe you women were on to something going to see doctors much more often than men do. So like I said better yet show him this post and tell him if he wants to talk to e-mail me and we can converse that way or I can give him my phone # either way I'm up for it. Good Luck- John
ps. you can chat with amymaura she is with the lung cancer alliance she's on here. She has lots of good info and advice.

By ShellyNY
Posted November 7, 2008 at 4:23 pm
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My husband was like that. He was on compazine and decided to take it after the fact also. Then just before his big round w/ cisplatin he takes the emend also and after his first "big day" he learned he should take the compazine a lot more often. The dr. also prescribed zofran to go with the compazine and that does seem to help. He only does emend on top of those 2 on days he gets the cis/navelb combo. So tell him to take it as prescribed, not as needed. He can take it every 6 hours and he should. The dr. also told us he may not feel "Nauseas" but with lack of appetite thats definitely a sign it's there, he just doesn't feel it fully. So tell him to take it more often and ask the dr. to add to it if necessary. Like I said my husband does that, after long treatments he has no interest in fluids and food. The dr, the nurses and I have tried to explain to him he must keep hydrated and eat small meals through out the day in order to keep his strength. He has lost 25lbs in 2 months, normal I know, but he wasn't a big guy to begin with so he seems very frail. I wish you lots of luck and prayers with you.

By D1
Posted November 7, 2008 at 4:36 pm
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Faye,
I'm so sorry your husband is so sick. I can relate to you as the "scared wife." It's a real job to be strong; do your best. Many experienced posters are giving you suggestions. Haunt the oncologist until he helps you, and if they have to change the chemo cocktail; so, be it. Not everyone can take everything. I hope things are a bit better soon. And, on the topic of your husband's job.....no person ever said, "I wish I had worked harder." DEMAND that your husband put himself first.

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