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!
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.
Click HERE for Complete Article from Mayo Clinic
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:
In addition to medications, you can take simple steps to reduce the pain you feel from mouth sores. You might:
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:
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.