Ever since becoming fairly myeloma obsessed after my biopsy results in July, there is one thing that has become very apparent to me: people with MGUS, smoldering myeloma, and multiple myeloma are extremely compassionate, kind, and most importantly, KNOWLEDGEABLE in regards to this disease.
Around August/September I started joining different myeloma groups - email lists, facebook support groups etc. I posted a few questions and always got a lot of answers and support. I have really learned so much by reading other patients' situations, questions, and the responses.
After starting this blog I also received several comments and suggestions that have been very helpful and informative. After writing the post MRI & Metal Removal I got a comment from an individual with MGUS warning me that the MRI contrast agent gadolinium can promote myeloma cell growth. He also left links to Margaret's blog regarding the topic:
Margaret's Blog - The gadolinium used in MRIs makes myeloma cells proliferate and Important update on the MRI contrast agent gadolinium
Like I wrote in my previous blog post, I was told during my pre-screening phone call that I would have the contrast injected part way through the MRI. Seriously, without this comment, I would have not been aware the contrast could possibly be dangerous to my health.
After reading the comment and links, mildly panicked, I call the MRI reception desk because I assume there must be some sort of mix-up. I ask, what is the name of the contrast agent you use during MRIs? Assuming, stupidly, that they MUST use something different than gadolinium.
Nope. Gadolinium is the contrast agent used at Dana-Farber. (Although, I have now heard that there are different types of gadolinium and I'm not sure which kind is used there.)
I call my mom and ask her to check with her very close friend who has full-blown multiple myeloma who is also a patient at DFCI. We find out he has had some MRIs with contrast and some entirely without.
I send an email to one of the email lists I am a member of. Several of the very kind, knowledgeable members respond and shared these links: Is the use of gadolinium in MRI a necessary part of the imaging test and is it safe? and GADOLINIUM CONTAINING CONTRAST AGENT PROMOTES MULTIPLE MYELOMA CELL GROWTH: IMPLICATION FOR CLINICAL USE OF MRI IN MYELOMA
So. Sounds like I really shouldn't have the MRI with contrast due to kidney damage risk - Nephrogenic Systemic Fibrosis (although, my kidneys are fine - knock on wood) and possibility of promotion of myeloma cell growth . So, why am I???
I call the MRI reception desk...again. The receptionist I speak with says that every patients' blood is tested one hour before the MRI to check kidney and liver function and after those results the radiologist decides whether or not to use the contrast. Kidney and liver function results for me have always been mostly normal. I voice my concerns re: gadolinium and myeloma cell growth and my diagnosis of MGUS/SMM. The receptionist puts me on hold to speak with the radiologist. Receptionist gets back on the phone and says, "Actually, you are checked off to have the MRI without contrast."
Okay. Seriously? All this angst and I'm not even having the contrast anyway?
I ask, "Well, then why was a told two days ago that I would have the test with contrast?" The receptionist says that after my responses to the pre-screening questionnaire were reviewed, in particular my diagnosis, the radiologist decided that the MRI would be without contrast.
Okay, I guess that makes sense. But, my question now is, did my actual doctor intend for me to have the MRI without contrast, or with and without contrast? Did the radiologist change the MRI to no contrast because I called and voiced my concerns? Who is making the decisions here?
So, I send an email to Dr. R. Which, honestly, is what I should have done from the beginning. I wasn't sure if I would hear from him though because this weekend is the 2012 ASH Meeting and Exposition and I figured he would be busy in Atlanta. However, he always responds very quickly to email and he actually wrote me back right away. He said that getting the MRI without contrast is fine and it shouldn't be needed as a first step.
So that's good, right? Of course now I'm over thinking things and am worried some data could possibly be missed if I don't have the contrast. Ugh.
Anyway. As far as I know, on Monday, my MRI will be without contrast. Phew. :)