Mouth and throat sores. Pleas help!

[Lacey]

My mother was recently diagnosed with myelodysplasia. She is on transfusions only so far. I know she has low platelets right now and they have given her an injection of Aranesp. I’m sorry I don’t know more than this, but getting information that is medical out of her is hard. The biggest problem she has right now, and the way she eventually became diagnosed, are mouth sores. Lots of them and they come and go.
She has one in her throat right now that just won’t go away, along with several on the sides of her mouth. She’s been to several drs. who say they are unrelated to the myelodysplasia, but I find that hard to believe. She has tried antibiotics (which give her thrush usually), all rinses and washes and even cauterization. She is very depressed and her quality of life because of them is poor right now. I am afraid she will just give up. Any help or suggestions you can offer would be greatly appreciated. I have been lurking and reading for a few weeks. I know there is a wealth of informations here. One more thing, she has had no chemo so the sores are not from that. Just one transfusion and the shot for her platelets. She is also on Nexium (for years now) for GERD, but is thinking of discontinuing that to see if it could be related. They have also given her morphine for the pain and to sleep. She tries not to take it unless she needs it, but is desperate at this point.

[Terri]

My Husband uses Rinconol its an over the counter mouth rinse and it seems to help he swishes it around for a few minutes. Seems to heal those sores pretty quickly.
We found it in CVS and then now my local mom and pop drugstore that we use orders it for us.

[Suzanne]

The products that people on the forum have recommended over the past couple of years are “ulcer Ease”, “Swish and Swallow”, and “Magic Mouthwash”

[Lacey]

She has tried all of the above or something containing those ingredients. Is this a common thing? Getting the mouth sores with the myelodysplasia? She has an appointment with a dr. at the Mayo clinic in FL. Perhaps they can figure out the cause and maybe how to control them better.

[Suzanne]

Yes it is common. Hopefully she is seeing specislists in MDS at a center of excellence. I believer Dr List is in Florida but have forgotten where-Someone will know and post his info.

[SandyB]

That would be: Dr. Alan List, Professor of Oncology and Medicine, and Chief Division of Hematologic Malignancies Hematologic Malignancies at H. Lee Moffitt Cancer Center, Tampa, Florida,

[patti]

Lacey,

My MIL gets mouth sores all of the time. They are usually not large but they are very annoying. They are platelet related in my MIL’s case. Normally she functions quite well at 6K platelets however last week she developed major blood blisters in her mouth. One on her tongue the size of a nickel and one on her cheek the same size. They were very black and she was unable to eat. A platelet check showed she was at 3000 platelets and her gut was leaking blood also causing her to feel very fatigued. She ended up getting a platelet transfusion. We can tell where mom’s platelets are at by the size and degree of the sores in her mouth. No blood test required! So my first thought would be to have her blood tested and see if she needs platelets. Everybody has a different threshhold for where low platelets cause problems. When mom’s platelets are her “normal” she has mouth sores about the size of a pencil eraser that come and go constantly. The best remedy that I know of for them is to mix 1 tbls. cherry maalox with 1 tsp. benedryl. Then swish and swallow. The maalox coats the sores and the benadryl helps the pain. If she does this before she eats then it should help her eat better also. Other than that, I’m afraid it comes with the territory and if someone is telling you it’s unrelated to her MDS – their nuts. IMHO. As a side note – while my MIL was getting her platelets we were literally able to see her mouth sores shrinking before our eyes. Very weird.

Take care.

patti

[lynette]

Lacey,
Patti’s remedy is a good one. It is the formula that we use in the hospital to help patients w/ mouth sores as a result of Chemo. Any flavor of Maalox or Mylanta will do. the mixture may be used as a “swish and spit” as well–since some may be very sensitive to even a small dose of Benadryl.
Good luck
Lynette

[Neil]

Hi Lacy,
Did the sores appear after the transfusion?
Did they transfuse her with irradiated/filtered blood.
There can be a reaction to blood that is not I/F much like GVHD.

[Lacey]

No the sores appeared about a year ago and have gotten progressively worse. That’s how they discovered the MDS. They set her from dr to dr and all including the oncologist said they are not related, but I knew they had to be. Her platelets are low and I will have her talk to the dr. I’m not sure the count, I know she will have it written down. The 2 drs that were mentioned in the center of excellence section were the one in Tampa that someone mentioned above and the one she has an appointment with at Mayo in Jacksonville. Thank you all so much for your help. Just knowing she isn’t crazy will make a difference. You are all too kind. She has tried the Maalox and Benadryl swish and no help she says or very little. I will also mention AGAIN the irradiated blood to her although she said the transfusion didn’t seem to make a difference as far as the sores.

[Author]

Posts