Dex

My name is Susan and I am a caregiver, my sister Denys has MM.  She has been hallucinating like crazy.  I am a nervous wreck. She sees mice, people sitting in her bedroom talking to her. Really weird stuff.  Have any of you had a similar or same reaction to this Steriod?? She is just starting Velcade.  Revlimid and Stem Cell didn't work. This is just one big never ending nightmare.  Where is my sister's quatility of life? I have been her caregiver during the Stem Cell Transplant she was never acting like this.

My wife was diagnosed with MM 1-year ago. She was prescribed Thal/Dex, but after the initial round she has refused to take the Dex. So for nearly 1-year she has taken only Thalidomide. However, she has a very complex regimen of natural and homeopathic remedies that have kept her very stable, functional and healthy. The most important of these is curcumin which is now available in a very powerfully bio-available form (BCM-95) from Life Extensions. Another is Wobenzym-N which attacks the damaging proteins in the blood (AllStar Health as the lowest price). Fish or Flaxseed oil in very high doses (9 grams per day) is also essential. She also takes homeopathic carcinosinum (cancer) and heka lava (bones). Those are the main supplements. There are a number of secondary supplements, but these are the most important. Again ... they have allowed her remain on very low doses of Thalidomide only and remain relatively pain free and functional.

The very best to you and your family,

Craig 

My mom has a similar reaction to Thalidomide.  She was extremely paranoid, thought there was a conspiracy at the hospital of Christian zealots out to get her.  At the time she also had a blood clot in her neck.  ONce she was taken off the thalidomide, she went back to normal.

 Medications have different reactions with different people.  Velcade, for example, worked wonders for my mom and had her in remission for almost two years.  Then she tried it again, it didn't do anything but make her blind.

 You need to communicate with her doctor.  I have found that is the most important thing.  Too bad for me that my mom's doctor refuses to return my calls and everything goes through the port of admin to RN to hemotologist to RN to admin and things get lost in translation that way.  I make it a point to be at my mother's actual appointments.  That way her doctor has to answer my questions.

Yes, myeloma's reaction to medications is different for every person. That is what makes its treatment difficult to navigate. Also, myeloma can become resistant to specific medications over time which is why you have to shift to a different drug after a given period.

Unfortunately, medicine (or at least cancer treatment) has for the most part become an assembly line procedure. Having in-depth discussions with the treating physician seems to be non-existent in most situations. The institution has taken precedence over the patient. 

Best regards to you and your family.

Craig