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Mycosis Fungoides 06 Radiation Dance Moves

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  Radiation Dance Moves July 2019 ~ September 2019 The first radiation appointment was on July 24, 2019. We assumed that the first appointment was just a consult with the radiation team. HA! This was the start of full-body radiation treatments. When you first walk in, you grab a key so that you can store your clothes in a locker in the dressing room. The keys reminded me of the keys that you used to get at gas stations (when gas stations were outside and icky). The key was attached to a large board - making it harder to lose or forget about. So, Tim went in and changed to the lovely hospital gown and began his radiation dance moves. He had radiation 4 days a week (Monday/Tuesday, Thursday/Friday). They had him do several different poses and alternated them each day so that they could get full coverage.  Here's what some of them looked like:                 There were 4 other poses but you get the picture.  Once he got back to the radiation area, it only took a few minutes and we we
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Mycosis Fungoides 04 Many Opinions

Many Opinions With Humira having been huge failure, then next try was Tremfya. We're now up to March 2019. Tim has been dealing with this since mid-2017 ~ itching, scratching, flaking. I truly don't know how he manages. I would be going crazy. It is a constant thing now to be scratching or applying creams and ointments. I think it has become an unconscious reaction at this point. But, they tried Tremfya on 03/19/2019. So Tim has had to endure a ton more biopsies and they just can't seem to figure it out. The doc had Tim come up to a different office where a ton of doctors and medical students from Wright State came in to take a look and offer opinions. Hmmm, in hindsight, we should have charged admission. We could be rich! Keep in mind that while all of this happening, Tim is still working. He works nights ~ a 10 hour shift, 4 days a week. But when you factor in drive time and late planes, 10 hours is more like 12 or more. He leaves at 6:00 p.m. and gets home around 9:00 a.
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Mycosis Fungoides 03 Danger Danger Danger

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Danger Danger Danger It's now late 2018 and Tim is getting ready to try the 3rd biologic injection to help clear up this "rash" and flaking skin.  After the dermatologist determined that Siliq was not working, he decided to move to a different drug. This time Humira would be the drug de jour. First dose on 10/05/2018. Humira is a TNF (Tumor Necrosis Factor) blocker. It works by blocking a protein (TNF-alpha) found in the body's immune system that causes joint swelling and inflammation. It seems like every other commercial on TV is about Humira and how wonderful it is in 'curing' psoriasis. So it must be good, right? WRONG! WRONG! WRONG! DANGER! DANGER! DANGER! Humira may work for many but for Tim, it caused everything to just explode. The 'rash' exploded into these horrible-looking welt-like lesions all over his body. It moved to his face and head. It was like his body was a war zone and the good cells were losing. Here's a quick picture: Yep - thi
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Mycosis Fungoides 05 New Doctors New Diagnosis

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  New Doctors ~ New Diagnosis After 1.5 years, 4 biologics, countless biopsies, and gallons of creams and ointments, Tim's dermatologist referred him to a dermatologist/pathologist in Cincinnati at UC Health. It took forever and many, many calls but in early July 2019, we finally got an appointment. YEA! Getting to UC Health Medical Center from our home is not a fun venture. It takes about an hour with ridiculous traffic and construction (endless construction) through questionable parts of town. It makes for a really fun trip! (NOT) As we waited in the exam room, we were cautious but hopeful. The nurse had us sit in certain chairs - we weren't sure why - but sure, why not. The automatic door to the room opened and in wheeled (yes, wheeled) the doctor. He had a motorized wheelchair that had all kinds of bells and whistles. As impressive as that was, however, it was the words that came from his mouth that impressed us. He took one look at Tim and said "you do not have psoria
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Mycosis Fungoides 02 Let the Drugs Begin

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Let the Drugs Begin The dermatologists diagnosed Tim's lovely rash as psoriasis. Can't blame him - if it walks like a duck, talks like a duck, treat it like a duck. Unfortunately, it was the wrong duck. By now, Tim's skin was really starting to look crazy. He was flaking skin everywhere. We have wood floors in the kitchen and I had to sweep them every day. I told him that he was like Charlie Brown's Pigpen with all the flaking. Here is a picture... If you zoom in, you can see his arms. His legs, chest, and back are the same. After trying all the topical treatments, the Doc decided to bring out the big guns in the world of psoriasis...and his first choice was Cosyntex. Once we got insurance approval, because we all know that one cannot make a move without insurance giving their two cents, Tim was sent the drug and got the thrill of injecting it. First dose 02/08/2018. The doc did warn us that it takes about 3 - 4 months for the drug to take effect. So while the drug was
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Mycosis Fungoides 01 In the Beginning

  My husband has Mycosis Fungoides.  When were first told of the diagnosis, our first thoughts were "huh"? What the hell is Mycosis Fungoides? Well, in a nutshell, it's cancer...a type of T-Cell Lymphoma. But more about that later. This blog will bring you up to speed on the last three years of our lives and then continue with the ongoing journey. Although this is a serious disease, here's some humor along the way ~ because that's just the way we are.  So, let's go back in time...to a time before rashes, tumors, doctors, and medicines. This all started back in 2017-ish. Tim was starting to itch a lot. A WHOLE lot. At first we thought it was some kind of allergic reaction. We had recently changed the type of dryer sheets that we used so we spent the entire weekend rewashing all  of his clothes, the sheets, and the towels. Oh yeh, THAT was fun. Unfortunately, it did not help. I can't remember when he finally went to his doctor but the itching got bad enough
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