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loves2fly's Message Board Messages

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RE: Epiglottis

by Loves2Fly - October 28 at 7:20 PM

You will have a better response posting this on the Head and Neck cancers page. that groups is quite active and very helpful.

RE: not sure of my role

by Loves2Fly - September 30, 2018

I am sorry you are having to deal with this.

My husband doesn't want to know all the details, and he is not up to some of them, but for my own mental health, I do need to know what is coming. For me, it helps me know what to ask as well as be able to be strong form him.

Great advice from jeanssister. 

Having POA for healthcare is really important. It lets you get copies of tests, etc. I get copies of it all, since even in this electronic world, one place can't seem to get records from another. A friend faced difficulty when her husband was unconcious, and she was not able to get his medical records to the treating Dr. as soon as she could, as the other Dr. refused to release them to her without his permission - although how they expected him to give it in a coma, she never was able to get out of them. After many critical hours, and phone calls Dr to Dr, they finally gave them to her.

I take a spiral notebook, and write down everything the Dr. tells us. Like jeanssister, I look things up when I get home. I write my questions as well.

Nurses and Dr. assistants can be a lot of help. Usually you can get their phone or email, and let them know that while HE doesn't want to know, you do, and how can you communicate easily. SOmetimes the nurse will take him out for "weight" or something simple, giving you a few minutes with the Dr. Our Dr. will give me a "look" when he is going to tell me something sort of "veiled" and then ask me if I "understand". I also ask questions that are carefully worded and he knows to listen for them. I usually start with "Dr. ___ I have a question....." and he knows to look beyond it. He and I had a discussion very early on in treatment and so we communicate well.

Sometimes these boards are also helpful as other that have gone through the same type of cancers can help you or point you in the right direction on research or medical journal quality items. Still, watch out for the quacks. :-)

I also had a dear friend that I could talk to about the hard stuff. I wrote things in a journal, and just putting it down on paper (or computer as it were) helped me deal with all of it. I kept files on each thing as it came up and used them as references. That really helped me when I felt trapped in my head with all the things hitting.

It is possible to have a discussion with your husband to say, "I understand you don't want or need this info, but I do, so I can be better to help you. I won't bring things up unless you ask me."? Mine was ok with that, but I am sure there are many that might not be.

I found this site that I found helpful for researching various things. https://www.ncbi.nlm.nih.gov/pubmed Use the search feature on whatever you are looking for. I usually focus on terms the doctor uses.

Swallowing issues are caused by many different things. Swallowing is actually quite complex, and we don’t even think about it until it isn’t working right. what will work depends on what is causing the issues.

There are some 25 sets of muscles just within the throat base, esophagus, trach and vocal cords alone! Extensive damage to any or all of these can develop a very wide variety of issues.

1)    Loss of the nerve sensitivity that triggers “the swallow”. This also often happens to stroke patients. Finding ways to trigger the swallow mechanism can help. Usually this is in where food or drink is placed on the tongue, no distractions, and even sitting posture can help. There are specially designed spoons and cups that can help with food placement. Even certain types of water bottles can make the water hit “the right spot” and make swallowing function better. This nerve sensitivity is what causes us to "gag" when we get a hair in our mouth!

2)    Loss of muscle. Again, stroke patients also have this issue. Improvements can be made (depending on amount) by certain exercises of tongue, jaw, and even neck muscles. Some have good results with acupuncture and massage as well.

3)    Loss of tissue. When tumors are removed, there is a loss of tissue, which can result in not enough -say tongue - to move food where it needs to go. The tissue/ muscle is physically gone, so the only way to deal with this is to find different ways of swallowing, such as trying with certain consistencies of food or adding ingredients so it “slides” better (butter or water, usually).

4)    Constrictions. This is usually like having a rubber band around a place in the tube. Dilations work well with this, as it can “break the rubber band”.

5)    Cobwebs. This is when scar tissue develops like a thin web across the esophagus. Dilations can break through this web and open up to swallow.

6)    Overall scarring. When the esophagus itself has large amounts of scarring, the esophagus itself can’t move the food along. It is a muscular tube and if it is too scarred, the muscle can’t do it’s job. The food simply doesn’t move down to the stomach, and seems to get “caught” in the throat. Depending on scarring, it might be possible for the food to move to a less scarred spot, and still allow for a swallow, although a bit more difficult.

7)    Scarring and Aspiration. If there is scarring, this also isn’t felt until the food is quite a way down. For normal swallow, we feel it at the top, cough, and it comes up (“went down the wrong pipe”). For those with radiation scarring, it might not be felt until it is at the lower branches going into each lung. The left lung has a branch that is almost 90 degrees from traches, but the right goes almost straight down. If food or drink get that far, it is very difficult to cough up. Any food (in solid or liquid) in the lungs can cause bacteria to grow, resulting in aspiration pneumonia. Even “chewing and spitting” can result in bacterial in the lungs, when water washing it down in a swallow is aspirated.

8)    Epiglottis issues. The epiglottis is the little flap that closes to keep food our of trachea and therefore, out of the lungs. The epiglottis is cartilage, and radiation can turn cartilage to fiber. Radiation can also change the size and shape of the epiglottis. When this doesn’t close, food and drink go into the lungs instead of the stomach. If the issue is only the muscle movement of the epiglottis, physical therapy can strengthen the muscles that move epiglottis, but in other cases, it doesn’t work at all. 

9)    Necrosis. Scarring causing loss of blood flow to tissue, resulting in tissue dying, which, if you can get it to heal can mean more scarring. HBOT (Hyberbaric Oyxgen Therapy) can help, but is often not covered by insurance. Worth fighting for it if you can, if you have necrosis, tho. After several battles, we were able to get 60 “dives” covered, which completely healed the area for my husband. 

So, why not surgery to remove scarring, or repair epiglottis, or graft tissue on? Sometimes it is possible, but very often, there is not a lot of blood flow to this area after radiation, and it has a high probability of not healing, or even more scar tissue to develop.

Dilations can work, but only if the problem is one of a few, of a wide variety of issues. They are very good in those cases, but don’t and can’t work in every type of issue. Physical Therapy can work, Reconstruction can work, Electrical stimulus can work, acupuncture can work, but again, it completely depends on what the issue is, and how severe it is. Sometimes scarring starts slow and then accelerates, sometimes it slows down, sometimes there is a pause. It is very individual based on a lot of factors.

Radiation is “the gift that keeps on giving” and effects continue the rest of your life (think half life of radiation). To what extent depends on how your body reacts (why do some scar heavily and others not), how much radiation you received, what type of radiation, what type of delivery, and location or locations on body. Getting in multiple areas, and/or both sides is going to give more issues than a small dose in one small spot.

Different doctors have different methods, as well as different methods depending on patient individual factors. Doctor may choose one type, etc., if only one spot on tongue or in throat is involved, and a completely different way if lymph nodes are also involved. If it is a tumor, plus mass, plus multiple lymph nodes on both sides, still another might be used. There is not a one size fits all, and perhaps that is a good thing.

While a PEG tube isn’t ideal, it can offer full nutrition and necessary calories quickly and easily. Having one permanently does change your life as well as family life. We don’t realize how much meals are a part of our social structure. Having to take with you everything you need to “eat” for trips is sometimes difficult and overwhelming. Getting through various airport security is a real adventure. But, with some planning, it can be done!

Aspiration pneumonia is a very real issue for people with swallowing issues. It differs from regular pneumonia as it is bacterial, not viral. Bacteria enters the lungs during aspiration. Most often, this bacteria is from food during swallowing, but can come from regurgitation or even vomiting. Some with swallowing issues will take food by mouth for taste, spit it out, and then rinse. This does not really protect them from aspiration pneumonia, as the water they rinse and swallow with may have small food bits or liquid and be aspirated. This is why people are told not to eat before surgery, as they might aspirate stomach contents. During aspiration, small pieces of food enter the lungs and “rot” there. This can quickly go to abscess, where the lung is deeply infected, and some lung tissue can be lost. This infection can then move into the blood stream and ultimately cause sepsis. Keeping a healthy mouth (ie. dental issues) is important, as bacteria can develop in the mouth, particularly with limited saliva.

Getting a PEG tube, when needed, and while not ideal, can mean a more active life. A meal with right nutrition and calories can be taken in a short time, and good health maintained.

You are not alone. My husband is 3 1/2 years out and has been and will permanently be on a PEG tube.Tests , PT, stim, multiple doctor opinions, you name it, we tried it. He is just recovering (2 months out) from severe aspiration pneumonia from regurgitation.  

I sure understand the wait.... my husband's case is now at 3 1/2 years "under review".

The ones that are winning their cases (when you can actually get your case in the system) are using the precidences of previous approved cases.

Here's where you can find them.

https://www.index.va.gov/search/va/bva.jsp

Myhusband (H&N cancer) needed something similar while on radiation, chemo, HBOT, so I made a chart in WORD using a table format and 8 1/2 x 14 paper.

I made a simple chart, one for each day.

26 columns - 1 for name of med, 1 for dosage, 24 for hours of the day.

Number of rows - as needed - one for each med, but also for temperature, BMs, rating pain level, nausea level, amount of nutrition (feeding tube), dental care, shower, etc. as needed. In his case it was 24.

Then I put color in the row for how and when to take med. If dosage was every 4 hours, every 4 hours the block was in color.  If every 6 hours, every 6th block was colored in. I also noted which meds could NOT be taken close together. For some things, we listed MAX med allowed, but also made note of how much he actually needed - especially helpful in assessing pain - for instance allowed 15mg but only needed 5mg kind of thing.

I color coordinated and logged items for the type they were - pain, bowel issues, nausea, nutrition, nutrition pump rate, hydration, regular meds (like blood pressure) etc. I blocked out time for radiation and chemo, as well.

I had a spot on the top of the chart for Day and date, and at the bottom for his weight and number of calories he was able to take in.

This let us see what and how much he was taking and made it much easier to monitor. It also helped to take for doctor visits when they needed to know pain levels, vomiting, etc. when he had to go to the hospital or ER, I had everything in one place on what he was currently taking. I updated the main chart when anything changed. I printed them out in batches of 5-7 at a time so they were always current and always ready for use.

Having things like dental care and shower helped in the middle of it all when he took a loooong time to get anything done. It helped to remind him without me nagging and helped plan in enough time to get it done.

I also noted on the sheets (on back) things that happened - visits, bad sleep night, etc. Some just for noting, but some showed things that stressed him, encouraged him, made him nauseous, etc. I was able to see things like upping his feeding tube pump rate past x day (upright) or y night (laying down) made him nauseous, etc. The sheets became a bit of a diary of sorts. I would note on the back of the pages overall things I wanted to track in his care.

Hope this gives you some ideas. Best of luck to you.

My husband developed necrosis and did HBOT. It worked wonders! He did 60 "dives", about 2 hours per day, weekdays with weekends off. 

He had a large spot of dead tissue that would not heal. It caused a great deal of pain, and was spreading. The radiation scarring cut off blood supply to that area, so healing was impossible. He noticed improvement after about 15 "dives" and by 60, the area was completely healed and healthy tissue.  At his center, they could watch movies or listen to music. He did not like being locked in, and it caused some anxiety for him, so I drove and stayed there which (in his case) helped. 

It did not help with swallowing since that was a different issue, but it did heal, he has no pain, and he has not had any other necrosis issues in 3 years.

Hi Kathy,

I am so sorry you and your husband are going through this.

Phlem is a big problem for H&N patients in treatment. In part, as saliva glands are being affected, there is nothing to water down phlem. The saliva glands in the lower jaw provide "watery" saliva which helps in swallowing and thinning phlem. Gargling with warm baking soda water or just water, (several times an hour) is helpful to break up the phelm. Sleeping in a more upright position sometimes helps too (at least 30 degrees). 

The phlem usually gets worse, I am sorry to say, until several weeks after treatment ends. Then it often gradually gets better. 

Make friends with any nursing staff or aids in the office. They seem to have the tips and tricks to help, and will help on a more personal basis. I found them much more help than the doctors - one of which, when my husband was telling him of dryness issues suggested we just "go to Hawaii". All the miserable side effects are in the fine print, but I found more help asking here for day to day issues.

Hoping he (and you) find relief.

Hi Donna,

No help on the backpack, but here are a few things we found helpful. 

Get a letter explaining you have a feeding tube from Doc for travel. Some want to see it and some not, but it eliminated them patting hubby down or asking to see it. We put a copy in checked nutrition, in carry on bag, plus another on person.

Call TSA (if flying) ahead of time and they will walk through security with you. They will usually let you keep your water bottle with you. They will also let you bring nutrition. Many airports have little "pod" types of rooms for breastfeeding that are clean and quiet. Sometimes in the executive lounges, you can find a privacy office type of room as well to eat.

Carry empty water bottles (if a particular kind works for you). If you do have to dump the bottle, you can refill once through security. My hubby needs a certain kind to help him swallow, so that was an issue for us. Carry on several 3 oz bottles of water in a spritzer bottle. (fits limits). Hubby carries several clean syringes as well, plus a zip lock bag for used ones. 

Ship nutrition ahead if possible. It is a pain carrying it all for any extended time. we have sent some ahead, had it delivered to family, to a hotel, etc. that worked well.

Driving, we just packed it, but temperatures have made it a pain to bring in to keep from freezing, etc. 

We just let people we were visiting know that hubby would need some time at points of the day, and he went back to hotel room.  He doesn't want to eat through his tube in front of people. When we were places that was difficult, we would park in a far corner of a parking lot,put the sun shade up, and he would feed himself, often while I was in the restaurant getting a bite myself. We once ended up in a cemetery as it was the only place we could find privacy and quiet for 30 minutes! We also have a dog, and if she is with us, he excuses himself "to check on the dog" or "walk the dog" and people don't question it. He also uses the dog as an excuse if he is just worn out and needs to rest. Although, people probably wonder about the dog pampering he does LOL!

Most people don't mind seeng it, and many are actually interested in how it works, but he rarely eats in front of anyone. I do watch to be sure he doesn't miss eating. He doesn't feel hunger any more, so it is easy for him to miss all together if we don't plan it in. He really wants privacy and some don't really respect that.  

Another issue is making plans with people that aren't good at timing. We met with family that would start with a 9 am plan, and by the time it happened, it was 1 pm, which threw everything off. With another family member, I discretely let them know when hubby would need time, and family member always had "something to do" right at that time, and encouraged us to meet later. 

So, a lot depends on how you are travelling, where, what is available, who you are with, etc. We tried a single overnight a couple of hours away for the first time, then a 4 day trip 6 hours away, then a week - then 2 - by car, then finally a flight across country.  

What we had to figure out was things like where to go to eat, etc. We like B&Bs, and many will let you eat in your room, so I had my breakfast delivered and we ate together. Also, I found it easier to stay in hotels that offered breakfast, as I could fill my plate and take it back to the room. I could also get things for him as well - milk, etc. that he sometimes suppliments with (for flavors). We also have done take-out dinners or room service in hotel rooms to eat together and not take time for eating separately while sitting with the other. Other times, he eats first, then we go out to eat so we can take our time and his stomach will settle before going to bed.

In my opinion, flying is hardest. You have travel time to airport, not a lot of options at airport for privacy and cleanliness, a flight, plus travel to destination. This can make a long day between eating. Plus, you have to prepare if your nutrition gets lost in flight. Hubby carries 2-3 days with him in carry-on. Fall back is over the counter stuff from the grocery store.

Good luck and have a great vacation!

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