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mouth sores

12 years 6 months ago #10129 by Melodie
When I did MVAC, I didn't have any issues with mouth sores until I was in the third month...since I have suffered with Shingles about 10 years earlier, I was in the habit of taking Lysine every day but had stopped when I began chemo....since my doctor nor nurses offered me any ideas, I took Lysine to help rid myself of the sores...seemed to work for me. Melodie

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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12 years 6 months ago #10097 by wendy
Dear Aimeth,

There are various ways of referring to response: partial response, complete response or stable disease.

In some clinical trials, drugs can actually be approved if they show something like 20% response. The big questions are how the treatments may effect long term survival and whether there is a balance in the risk vs. benefit ratio.

Since MVCA is a toxic and no doubt expensive treatment they probably need to justify continuing to use it. I would hope that they would not continue a treatment that didn't show response, but have seen the opposite occur as well. When we questioned my step father's doctor why they were continuing chemo while the cancer was growing the response was "It's unethical to withhold treatment if the patient asks." But we said to ourselves, "Isn't it unethical to subject a person to toxic treatments that aren't working?" But in this case it came down to patient preference, my step father wanted to go out fighting and there were no other chemos for his cancer (malignant melanoma).

There are other drugs being tried for blc, if your husband doesn't respond to MVAC and is wants to try something else. The most important thing is to be in decent general condition otherwise, aside from the cancer. If not, most oncologists will hesitate to enlist a person in a clinical trial or take non-standard approaches.

Perhaps a private talk with your husband's doctor about what options he would suggest in case MVAC poops out. There are some things covered in our "metastatic' page:

Wishing you the best with everything,

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12 years 6 months ago #10091 by aimeth
Hi and thank you all for the wonderful response. My husband is feeling better now. Needles to say it has been a ride. Mouth sores are not fun. We have been doing a lot of things suggested. Eating soft foods. Using baby toothbrush. I also got him biotene mouth wash and it all seems to be helping.

This week we just started our 2nd cycle of MVAC. My husband still experiences some pain, inspite of the oxycodone he is on and some bleeding. I am getting anxious because we are getting close to that line where we find out whether the chemo is working or not. Our oncologist had told us that after 2 cycles of MVAC they would do a cat scan to see whether or not was working. Now, how would they determine that? I am a bit confuse because when we were doing cisplatin/gem we thought it was working only to later find out that it was not. We saw some response but they didn't think it worked. Should the tumor be totally reduced by the chemo? Maybe someone can enlighten me or maybe I am just in denial that is very hard to understand their common sense. Anyways, thank you all again!!!! Aimeth

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12 years 6 months ago #10044 by momof4
We received a brochure from the cancer center when my husband signed all of his consent forms. Check through your paperwork as I am sure they provided you with one too. I know that you receive a lot of information and it surely overwhelming, maybe keep a folder of bag with all of the literature in it? Anyway, if you didn't receive it this is what it say in the book we have if you already have mouth sores:

Use a very soft tooth brush
don't brush too hard
soak the brush in hot water before brushing and rinse with hot water during brushing
Rinse the toothbrush well after each use
If the toothbrush hurts use gauze on the end of a Popsicle stick or tongue depressor
Gently rinse mouth before and after meals and at bedtime with the following solutions (swish solution around in mouth and gently gargle and then spit out)
1.Baking soda one teaspoon to 2 cups of water
2. 2 teaspoons salt, one teaspoon baking soda and one quart of water
Try to drink 8 glasses of water

If mouth sores are present try soft foods that are easy to chew and swallow like:
Bananas, applesauce, and other soft fruits
Peach and Pear Nectar
Cottage Cheese
Mashed Potatoes, macaroni & cheese
Custards, puddings, and gelatin
Scrambled or soft boiled eggs
oatmeal or other cooked cereals
pureed or mashed veggies

AVOID foods that can irritate your mouth such as:
Citrus Fruits and juices
Acidic foods like tomatoes
Salty foods
Hot, spicy foods-pepper, curry, horseradish
Carbonated beverages (soda)
Rough, coarse or dry foods-raw veggies, granola, toast, and crackers

Cook foods until they are soft
Cut into small pieces
Mix food with butter, thin gravy and sauces to make them easier to swallow.
Use a blender or food processor
use a straw to drink liquids
Try foods cold or at room temperature. Hot and warm foods can irritate a tender mouth.

If your husband takes a multi vitamin, then his is getting all of the folic acid that he needs. Make sure to check with your doctor before added anything even vitamins/supplements, because in the wrong dosages they can be harmful. They should keep a chart of everything that he is taking even vitamins. I always ask my pharmacist about interactions too just in case the Dr. missed something.

I hope this helps a little

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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12 years 6 months ago #10021 by Rosemary

My Mother has occasional bouts with mouth sores because of certain meds that she is taking. I have supplied her with bottles of folic acid, which she takes during outbreaks, and I haven't heard any complaints about mouth sores in a long time.

You didn't mention which chemo that your husband is taking, so I just picked up on Joe's Methotrexate and googled "methotrexate/folic acid/mouth sores" and got some interesting results.

Here is a link that may or may not help concerning the use of folic acid for mouth sores. As always, I would urge you to give your doctor the heads up before adding any supplements as a remedy for the adverse side effects of chemo.

Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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12 years 6 months ago #10019 by wendy
Hi Aimeth,

Sorry your husband has mouth sores...hasnt' he had any guidance about this? I have also heard that sucking ice chips and eating popsicles during the infusions help prevent them. I have also heard that Biotien mouth wash and toothpaste help, too.

Take care,

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