Information and Support for MPD's

Our Personal Journey With a Myeloproliferative Disease

Itching and MPD's

 A lot of people with an MPD have terrible itching, especially with Polycythemia Vera.  This is due to an over abundance of red blood cells.  Some years ago John's doctor at the *University of Michigan told us about a Narrow Band UVB Light Therapy Machine.  He gave John a prescription to use the light to take to a dermatologist.  They have a Narrow Band UVB machine they use for Psoriasis.  This particular dermatologist had heard of using this machine for itching in an MPD, and had one other patient using it for that.  Well, John began his sessions which started out at about a minute and a half, then increased.  He went 2 - 3 days a week at first, and eventually went to 2 days.  It literally changed his life as far as the itching.  He could cut back on the Hydroxyurea which, in turn, made him feel better.   Here is a link to where we purchased ours, but I'm only enclosing this link because I don't  know any other place.  Remember, use your Insurance FIRST.

 Eventually, we purchased a home unit, which worked the same way, but took longer because it was a six-foot stand up unit with six bulbs, whereas at the doctor's it was a walk-in unit, kind of like a stand-up tanner at a tanning salon.  With our unit, he just turned around half way through to expose the other side of his body.  At the doctor's office he didn't have to turn around because the bulbs went all the way around. 

 The way I found a unit was just to do a google search, and we settled on one in particular.  You can contact me for information on where we purchased.   I always recommend that you go through your insurance company before purchasing this Narrow Band UVB Light Therapy Unit for yourself.  We didn't go through our insurance company, and ended up paying full price.  Our insurance company told us we should have gone through them, therefore, they wouldn't reinburse us.  So, please, check with your insurance company.  This light machine is considered Durable Medical Equipment.  Once again, please contact me for more information.

One other thing we learned while researching was to use a sun block on any radiated skin.  You wouldn't want to use a sun block on your whole body, because it would block the UVB rays.  Yes, your skin will tan with this machine so everyone will always be asking you if you just came back from Florida, unless you live in Florida, of course! 


glitter-graphics.com

 Definition of Narrow Band UVB--

In phototherapy, skin is exposed to an ultraviolet (UV) light source for a set amount of time to treat certain skin conditions. Ultraviolet lights are rays of light from the sun that are not visible. Phototherapy uses a man-made source of ultraviolet light for your treatment.

 Narrow band UVB (nbUVB)—emits a narrower range of UVB wavelengths that can reach more specific areas, even skin folds. https://healthlibrary.epnet.com/GetContent.aspx?token=af362d97-4f80-4453-a175-02cc6220a387&chunkiid=102866

Please keep in mind that most articles found on the web about the Narrow Band UVB Light therapy is directed toward using it for psoriasis and other skin conditions.  I've yet to find an article talking abut using this treatment for an MPD.  My quest now is to find articles about this, and I am going to contact the Academy of Dermatology.

 

 

 

The U of M doctor is no longer there in the Hem/Onc department, or at U of M.  He went on to another university hospital to head the hema/onc department.

 

Mouth Sores

Click HERE for Complete Article from Mayo Clinic

How do you treat mouth sores?

What happens if mouth sores become severe?

Despite efforts to prevent mouth sores, you may still develop them. Treating mouth sores primarily involves minimizing your pain until the cells of your mouth heal and begin regenerating after your cancer treatment ends.

Tell your doctor if you develop any sensitivity in your mouth or notice any sores forming. Your doctor may recommend treatments, such as:

  • Coating agents. These medications coat the entire lining of your mouth, forming a film to protect the sores and minimize the pain you might feel while eating or drinking.
  • Topical painkillers. These medications can be applied directly to your mouth sores. Your mouth may feel numb when using painkillers, so be careful when eating or brushing your teeth because you won't be able to feel if you're causing more injury to your mouth.

In addition to medications, you can take simple steps to reduce the pain you feel from mouth sores. You might:

  • Avoid painful foods. Stay away from acidic foods and spicy foods that could further irritate your mouth. Avoid sharp and crunchy foods, such as chips, crackers and pretzels, and instead opt for softer foods cut in small pieces. Caffeine and alcohol also can irritate an already sore mouth. Eat foods at room temperature or slightly warm, since hot or cold foods might be painful to eat.
  • Eat small meals more frequently. Cut your food into small pieces and eat slowly.
  • Use a straw. A straw for drinking keeps liquids away from sore areas in your mouth.
  • Continue cleaning your mouth. If it's too painful to use a toothbrush, ask your health care team or your dentist about special foam swabs, which are easier on your gums. Rinse out your mouth several times a day. Avoid mouthwashes that contain alcohol. Mix a weak saltwater solution to swish around in your mouth or try a combination of baking soda and warm water.

If your mouth sores progress, they can become severe and cause other complications. Sometimes these complications become so severe that you have to stop your cancer treatment temporarily. Complications can include:

  • Infection. Mouth sores offer a convenient way for germs and viruses to get into your body. Since cancer treatment can weaken your immune system, serious infection can result. Continue cleaning your teeth and mouth during and after treatment to reduce your risk of infection.
  • Bleeding. Chemotherapy reduces your blood's ability to clot. Bleeding from your mouth can range from mild, with some spotting when you brush your teeth, to severe, with bleeding that's difficult to stop. Your doctor can monitor your blood counts and give you medications to help your blood clot. When your mouth sores bleed, it's important to continue cleaning your mouth as best you can — even if that means just rinsing with water.
  • Difficulty eating and swallowing. Painful mouth sores can make eating and drinking difficult. If eating small meals of soft foods isn't helping and you're quickly losing weight, your doctor may recommend a feeding tube to get you the nutrients you need to fuel your body.

Researchers are working to develop new ways to prevent mouth sores, to relieve pain and to prevent further complications. Until then, work with your health care team and your dentist to make sure your mouth is in good shape as you prepare for treatment. Though mouth sores can be distressing, they are temporary and the pain can be minimized.

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