Lets All Share What Works And What Doesn't

In reading all the posts it is for sure that we all are going through the same thing in one form or another. What an awful disease. Why don't we just make a list of what we recommend to one another and add to it from individual experience? I know we all feel the need to tell what we have before asking what works. But the bottom line. It all gets down to radiation/chemo/surgery. Either all, one or two. I'm really interested in just reading what people have found to be helpful. From meds. to "snake oil". Heck, I'll try anything. For an example. Someone told me eating raw red bell peppers before and as long as you can tolerate them will help the taste buds and mouth sores. Probably silly, but if it can't hurt.....

So, all you veterans of this war out there. Just list what you took and did to get through your nightmare.

I'm two weeks into mine and haven't hit anything bad yet. I know it is coming. What worked, what didn't? I know everyone is different, but lets fire up our list.

Thanks,

Rick

 

My radiation oncologist prescribed liquid oxycodone for pain, it also helped with the coughing from the mucus. I also found that sleeping/napping without a pillow helped with the gagging. They can also get you "magic mouthwash" which will numb your throat long enough for a quick meal.

Supposedly, zinc supplements will help you regain your taste faster.

When my throat and taste got bad, I found that orange gatorade was more palatable than water, which had a bad taste to me.

Make sure you drink as much liquid as you can, not only to keep the swallowing intact, but to avoid dehydration.

Talk to your oncologist about anti nausea drugs, especially if you are geyying chemo. I was taking zofranm, ativan, emend, and a couple of others.

I'll probably think of some other things later,

Goood luck with your treatment,

Mike

Here’s what my husband did during treatment:

• Amofostine injections to protect salivary glands and taste
• G-tube – for continuous nutrition
• Glutamine – amino acid powder that fights mouth sores and protects taste buds from radiation (health food store)
• A feeding pump for the g-tube towards the end when it’s hard to get all the nutrition – you can run it at night while you’re sleeping
• Chocolate flavor ensure
• Florid mouthwash
• Anti-anxiety medication
• Pain control – why be a martyr?

Best of luck -

Did the Glutamine help the mouth sores?

Gulatime helps mouth sores and other things too like protection of salvery glands.

One other thing I thought of-- we had all of my hubbie's silver fillings pulled and replaced with white fillings.

Hi Julie:

Great suggestions and thank you.  My hubbie went to dentist and he only suggested Biotene mouthwash, no filling replacement.  Also got a fouride treatment he uses nightly as a toothpaste.  Were you recommended to replace the fillings and did it help?  Like the glutamine idea.  My hubbies drs aren't concerned about hitting the salivary glands with his IMRT.  Should we be requesting the amofostine injections anyway? 

Thanks,

 

Kara 

 

Cinnamon masked the awful taste.  Lemon drops worked on the taste too.  Megase worked when the weight got really low and it made him want to eat like crazy and bulked up some.  Used blue green algae protein drinks which were a great source of nutrition, but he was unfortunately so ill from chemo he couldn't always hold it down (used Zofran only that round, and never quite stopped throwing up-had much better results with Emend and Zofran together, and there are programs available through drug companies if you can't afford it).  I'm sure I'll think of many more. 

Megase?  Is this a nutritional supplement or a med?

For nausea try dried ginger candy, ginger tea (made from fresh ginger), and orange peels or orange essential oils. You put the orange peels in a bag or put some drops of the oil on a paper towel and smell them when you are nauseas. These things worked better for me than Zofran and any of the other aniemetics that were prescribed.

For mucositis try rinsing and gargling (as best you can) with salt water. Do it often throughout the day and follow it with a glass of plain water. Make yourself swallow it (the plain water, not the salt water). Keep plenty of tissues and paper cups around.

For mouth sores ask for a prescription for magic mouthwash (although this won't help if you're really nauseas).

For weight loss try supplementing your food intake, whether it's by mouth or PEG, with body builder's protein and/or weight gain powder drinks. They are available at GNC, most health food stores, and any store that caters to weight lifters.

If you haven't had your teeth removed prior to treatment you must keep them very clean. Brushing them can be a very painful experience especially if you have mouth sores. Get a "baby's first toothbrush" and use that. It is much softer than any adult type you can buy. Don't use an electric brush. You can really damage your gums with one of those.

The best tip of all is to keep your spirits up however you can. If you have a hobby or something that you enjoy doing, try to continue to do it through treatment if you can. Even if it doesn't help your health condition it will greatly improve your quality of life. Remember also that your caregiver (if you're lucky enough to have one) is not having any fun during this ordeal either. Please be kind to them no matter how bad you feel.

Good Luck,

Joe