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What does it feel like?

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

I would like to know what it feels like to swallow. Mom says on a scale of 1 to 10 her pain when swallowing is 12. I asked what it felt like and she said she could not explain it.

Can someone try to describe what it feels like so that I'll have some sort of clue?

She takes a bite of food and swallows. Then has to drink two drinks of water to move it down the esophagus. I can see she is in terrible pain. She refuses morphine. Says she doesn't want to be knocked out. She is taking hydro-something every 3 hours.

I tell her there are drugs that will kill the pain, but she refuses. She has 8 more radiation treatments to complete her series of 28. They stopped rads on Wed because of severe skin burns. Then chemo was stopped on Friday. Everything may resume on Wednesday or Thursday.

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

Hi Ginny,
could her hydro-something be hydromorphone? If so, it is a very potent centrally-acting analgesic drug of the opioid class. It is a derivative of morphine, to be specific, a hydrogenated ketone thereof and, therefore, a semi-synthetic drug. It is, in medical terms, an opioid analgesic and, in legal terms, a narcotic. (copied this from another website) Anyways, also known as diluadid. (sp?) Perhaps they could up the dosage of that, if she's willing to take that..... There are 2 kinds, that I know of anyways, there is the fast acting 'codone' and the slow release 'contin'. Lee was on both the hydromorph contin and the hydromorph codone for breakthrough relief. I hope I've gotten this information right, please someone correct me if I'm wrong!!

As for the pain of swallowing, I certainly can't describe it personally, but Lee always said that it felt like everything was 'scraping' all the way down. Lee had some pain swallowing, but definitely not at a 12. His problem was more that the food just got stuck, and he'd have to cough it up. He also was so scared of aspiration, that he just plain old stopped eating, and completely lost his appetite.

I hope mom is going to be able to resume treatment asap
wishing you well
Chantal

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

Yes, that is exactly the drug - Hydromorphone 4 mg. Mom was at the table with me when I typed my message and I didn't want to pull out the bottle to type the name right then.

She said it helps the pain, but not the pain of swallowing.

thanks for the description of the pain.

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Ginny

Just a few thoughts.

Have mom take her pain meds about 20 minutes before she is to start eating.
Also, did her Dr order Magic Mouthwash for her. This is a combination of Diphenhydramine, lidocaine and maalox. She will swish and swallow before eating and when in pain.

Also, have you gone to the Head and Neck board. On their first page is a post called "HNC SUPERTHREAD" It is always kept on page one. It has some of the best helpful information all in one place. In the Superthread, look under Radiation Side Effects and then under, Dysphagia problems swallowing. It talks about the magic mouthwash.
It has helped me so much with side effects. And it is easy to find the answers you are looking for. I really hope you look through the Superthread, as you may find other helpful info for your mom.

Last thought, it seems like your mom is on a low dose of pain meds. I understand that she is afraid of anything stronger for fear of sedation. But she really needs to have great control of her pain right now, as it may increase as the rads continue. It is very easy to become malnourished and or dehydrated when the pain of swallowing is so severe.
For me, the pain was like the worst case of strep throat x 100. It hurts to even swallow saliva. Pain meds are needed. It is almost impossible to go through rads without them.

Hope this helps a little.
Lisha

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

Yep, mom has the numbing mouthwash. She doesn't like it because her mouth goes numb. I tried to give it to her with a straw (to avoid the mouth), but she said she doesn't like it. My mom is very very stubborn and fussy.

Before I left for Israel, she was refusing any and all types of pain meds. She would get really angry if I mentioned morphine. I finally decided there was nothing I could do to help in this area except leave her alone. I figured she'd take a pill when the pain became more severe. The day before I left, she called me to ask if she could have a pain pill. (A breakthrough for me!) I said of course you can have a pain pill.

When I came back she was taking vicodin and had complained to the docs that it didn't help. They had just put her on Hydromorphone 4 mg the day I got home. That is what she is now taking every 3 hours.

While I know this is not enough to ease her pain, I think it is a great stride for her. At this point, all I can do is be thankful she's at least agreeing to take it every 3 hours. I will just wait for the pain to become such that she will ask for something stronger. I try to tell her that if she takes the morphine it will allow her to eat better and maybe she won't feel "drugged" as she puts it. She even fights anesthesia - always has. Hates to go under even mildly.

I will go visit the site you mentioned. Thank you!!!!

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

I couldn't find anything called HNC Superthread.

pam716
Posts: 24
Joined: Oct 2011

Hi Ginny

I was interested in the Superthread also. My father, I believe, is going through the same treatment as your mother but is only on week three. He is getting about 5 to six weeks of radiation and a continous infusion of 5fu. To get to the superthread I looked through some current posts on the HNC discussion board and there was a link to it. It was highlighted in blue. If you double click on the link it brings you right to it. They had some great information there. My father is currently having problems swallowing his nightly pills. Do you know any tricks to get these down? Sending prayers to your Mom and your family.

Thanks,
Pam

paul61's picture
paul61
Posts: 1105
Joined: Apr 2010

Pam,

I can't remember who specifically on our board supplied this tip, but, most of us think that when we swallow something; tipping our head back helps us swallow.

In fact, just the opposite is true. If you are swallowing something, tipping your head forward or down actually opens the esophagus and makes it easier to swallow. I take some rather large vitamins each morning and I find this approach makes the process much easier.

Of course, many medications are also made in liquid form as an option, I have also heard of some folks crushing their pills and mixing them with liquids. You do need to be careful to not crush time release medications that come in capsules or coated pills so a discussion with your doctors would be best before deciding to crush medications.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

I don't have any magic answers on how to swallow pills. My mom was having a horrible time swallowing her diabetes pill. They said stop taking it. She hardly eats, so her blood sugar level should be raised. All the other pills she takes are small. Vicodin was a tad large, so they told her to cut that one. Now she's on Hydromorphone and that's small enough.

I do notice that when mom eats, her head is bent forward. She does this for water, food, pills, boost, etc.

I'll go back and look for the HNC Superthread.

My mom is also on 5FU via 24/7 pump. They have disconnected the pump right now because she's off Rads until Wed or Thurs. She has 8 more Rad sessions. Then no more chemo! She is slated for Radiation Boost though, but that's just once a week for 4 weeks.

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Ginny

It is always on the first page, sometimes you have to scroll about half way or more down to find it. It has become a huge resource of information. A sweet woman named Dawn maintains it for everyone. She brings it to the first page every Sunday so that it is readily available.

Another thought for mom. What about a low dose Fentanyl Patch. After the first few days she should adjust to it nicely and not feel drugged at all. Just pain relief. It can be put on her back so that it would be a tad bit difficult for her to remove. It is changed every three days.

My mom just turned 90 and can be stubborn. She has Parkinsons, so swallowing is also very hard for her. Her O.T. said to bend head forward to help with swallowing. Seems to help her. My mom swallows her meds with spoonfulls of applesauce. It helps the pills go down without risk of aspiration.

I agree about crushing pills. Just be sure that they are not time release or coated. But I would think that the patch would work for mom best. She will feel so much better. It is a horrible pain.
Does she listen to what the Dr tells her to do, my mom tends to do that over what I tell her. Maybe the Dr could tell her that this (patch) is a required part of the therapy. I try every trick in the book when it comes to my mom and medical issues. Sometimes we just have to fib a bit to help her.

Stay strong, it can be a hard job, but so worthwhile.

Lisha

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

Ahhh... a patch! I will ask the doc about that. On her back is good too! Trickery! She seems to be in really good spirits now that she takes Hydro every 3 hours! I do not, however, wake her for a dose if she's asleep. She is so much better now than 3 weeks ago. Maybe she had terrible anxiety despite her Xanax over the fact that I was leaving. She did very poorly while I was gone. My brother told me she missed me and asked him every day when I'd be back. He is very gentle with her, so I know she received the best care.

I think she is just perked up because she's here with me, and I do try to keep her very comfortable and well-fed. Eating is still not pleasant for her and I think she eats to please me. Whatever -- I'm grateful she's eating!

She also has to take potassium. A packet mixed into a drink. I tell her it can be mixed into any drink. She insists on water. Next time I may just mix the darn packet in Boost, which she loves!

I scrolled down on the list to look for HNC, but didn't see it. I'll go back there and look again.

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Ginny

Your post made me smile. I am sure mom missed you even with the best of care. When I had to go to Houston for tx last summer, I never told mom I was going. Hubby stayed home and visited her often. I called and spoke with her, and told her that I had sore throat and bronchitis. I was gone for 5 weeks! I think she may have started to wonder if I would ever get over my"cold". Ha, it worked great for us, since my mom becomes very very anxious when her routine is changed or I am out of town. We learned to just not tell her, and she does so so much better. Plus she does not have a good sense of time/ days etc.

Anyway, you sound like me and want the best for mom with the least amount of stress for you..

One other thought, try using Glutamine for mom. It really helps with healing and lessens the severity of the Rads effects. You can read more about it on the Superthread. So happy that you found the Superthread through Jerry and his link. I need to get my grandson to teach me how to do a link.

Lisha

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

5 weeks! I dunno if I could have fooled mom that long. I don't have any other days gone until October when I'll be gone 11 days.

In her healthy days I'd call and mom wold say, "you haven't called me 2 days and 5 hours!" Talk about guilt!

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Jerry has created a thread with a link directly to the HNC thread. Look for it on the 1st page here.

Terry

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