HELP ME GET TO THE ONLY US CLINICAL TRIAL

HEY THERE!

I'M SEAN.

I AM THIRTY AND TRYING TO BE THRIVING:)

I JUST RECENTLY WENT THROUGH TWO YEARS OF BEING WRONGFULLY DIAGNOSED WITH LYMPHOMA, COME TO FIND OUT IT IS ACTUALLY SOMETHING MUCH MORE RARE AND UNKNOWN THAT IS ATTACKING MY IMMUNE SYSTEM.

CASTLEMANS DISEASE, FOR THOSE OF YOU LIKE MOST WHO HAVE NEVER HEARD OF IT, HERE IS A RUN DOWN:

• Diagnosis

Castleman disease (CD) can be difficult to diagnose as it is both a rare disease and an imitator of many other diseases. Patients can have the same symptoms as some cancers and some autoimmune diseases. Due to the complexity of the disease, physicians often need to rule out many other diseases before CD is suspected.

• Treatment

The treatment options for Castleman disease are specific to the subtype diagnosed by a physician.

Unicentric Castleman disease (UCD): Surgery is considered by experts to be the first-line treatment for almost all cases of UCD. A patient is considered cured of UCD if their enlarged lymph node or nodes are removed completely and any previous clinical/laboratory abnormalities return to normal. Sometimes, removing the enlarged lymph node(s) is not possible. In these cases, medications or radiation may be administered to attempt to shrink the enlarged lymph node. Some UCD patients may experience inflammatory symptoms (fever, fatigue) and elevated inflammatory laboratory markers after lymph node excision. These patients are sometimes treated with treatments frequently used to treat MCD. There are no reported cases of UCD transforming into MCD. Your medical team will discuss the options and risk for surgery depending on the location of the enlarged lymphS.

• HHV-8 negative/idiopathic Multicentric Castleman disease (iMCD): A few specific therapies such as siltuximab and tocilizumab are considered first-line treatment. These drugs target a specific compound (interleukin-6) that is highly involved in inflammation. Unlike traditional chemotherapy, anti-IL6 therapy is more specific so the side effects are milder. The amount of immunosuppression will be dependent on whether other drugs are used simultaneously. For reasons still unknown, Rituximab tends to not work as successfully in iMCD patients compared to HHV-8 associated MCD patients.

OH, THERE ARE ONLY AROUND 20K CASES WORLDWIDE WITH 4-5K NEW CASES PER YEAR....

I AM IN THE MULTI CENTRIC AREA WHICH IS TERRIFYING.

I AM TRYING TO MAKE ENDS MEET TO COVER GETTING TO THE UNIVERSITY THAT IS DOING CLINICAL TRIALS(THE ONLY TRIALS IN THE WORLD BESIDES CHINA), COVER THE COST OF HOUSING DURING THE TRIAL, AND HOPEFULLY TO JUST BE SEMI COMFORTABLE UNTIL I CAN SAFELY AND SUCCESSFULLY RETURN TO OPENING MY RETAIL STORE BACK HOME. WITH THIS DISEASE I HAVE BEEN UNABLE TO RECEIVE THE VACCINE WHICH MAKES LIFE MUCH MUCH HARDER AND SEEMS IT WILL ONLY GET HARDER IF THIS HAS TO CONTINUE. ONCE I AM IN THE CLEAR FROM ANY OF THE ONGOING TREATMENTS, I WILL BE CLEARED TO START VACCINES AND JUST GET BACK TO A SEMI NORMAL LIFE I MISS SO MUCH.

IF YOU ARE IN A PLACE TO HELP IN ANYWAY, THIS IS SOMETHING THAT REALLY CAN SAVE MY LIFE AND WE MORE THAN LIKELY DON'T KNOW EACH OTHER BUT THE AMOUNT OF ENTERNAL GRATITUDE WOULD BE UNEXPLAINABLE.

THANKS FOR TAKING THE TIME TO HEAR THIS OUT+POSSIBLY HELPING ME SEE 35.

SEAN