[Beacon Staff]

Weekly Poll - Have You Participated In A Clinical Trial? - 2013

by Beacon Staff on Wed May 29, 2013 10:44 am

Welcome to another edition of The Myeloma Beacon’s “Weekly Poll.” This week’s question is about participation in clinical trials.

A few clarifications:

First, this question is intended for readers who have active multiple myeloma, smoldering multiple myeloma, or monoclonal gammopathy of undetermined significance (MGUS). If you are a caregiver or spouse of a myeloma or MGUS patient, you are welcome to answer on their behalf.

Second, when we say "multiple myeloma-related clinical trial," we mean a clinical trial that either tests a treatment for myeloma, smoldering myeloma, or MGUS; tests a treatment for symptoms or side effects commonly experienced by patients with any of these diseases; or tracks the progression of any of these diseases.

Once you have answered the question above, feel free to add whatever comments you feel might be relevant in the discussion below.

We ran this same poll about a year and a half ago, but we are running it again so that Beacon readers have access to the latest information and can compare it to the previous data. 2011 poll:
https://myelomabeacon.org/forum/weekly-poll-have-you-participated-in-a-clinical-trial-t642.html

[Jmoree]

Re: Weekly Poll - Have You Participated In A Clinical Trial?

by Jmoree on Thu May 30, 2013 11:47 pm

My husband is currently in a clinical trial. This is his second cycle. Blood work good & bone marrow count went down. He was diagnosed 3 years ago. Has tried thalidomide,2 auto transplants, Revlimid, Velcade,& kyprolis. Nothing has held him in remission for any length of time. We are hoping this trial will be the one that will do the trick.. He is amazing, keeps going with a great attitude. His back along with arm & collar bone have broken during the course of this disease.

[eazyd]

Re: Weekly Poll - Have You Participated In A Clinical Trial?

by eazyd on Mon Jun 03, 2013 12:05 pm

The trial my dad is in has to do with strengthening bone density. Double-blind study, so not sure if he was getting the new medication or the common medication for this. Sounds like the previous post's husband should try some of that stuff..

[Beverly]

Re: Weekly Poll - Have You Participated In A Clinical Trial?

by Beverly on Tue Jun 04, 2013 4:39 pm

Last July my oncologist diagnosed me with borderline Smoldering /MGUS Myeloma. After an online search I decided to explore the NIH for trial studies. I was directed to contact Yvonne Wall. After multiple emails to her she finally asked me to send my oncologist medical records. My oncologist send my records three times and Ms. Wall kept saying she hadn't received them. We had confirmation from NIH and even sent her a copy of the confirmation. In April 2013 I received a note from her saying she would contact me in October 2013 regarding participation. I'm a bit concerned because it seems that my communication with her has been so difficult. I've yet to speak to her - just can't seen to catch her in - always a voice message or email. I'm the first to admit that I'm really in the dark with all the details I read in the Myeloma Beacon and links. Of course, I'm anxious and want to get moving. Naturally I'm afraid what the future holds and I'm reaching for straws for any thing that will make all of this understandable to me. Like many others, every ache or different physical feeling makes me wonder if I've advanced. I see my oncologist every 3 to 6 months and so far my "numbers" are "advancing slowly". I've only had an initial bone marrow biopsy so really don't have follow-ups for comparison. My full body x-ray scans were fine and so far my 24 hour urines only show slight abnormalities. Does anyone have any suggestions of who I might contact to possibly speed my participation in a trial along? Any ideas where I might go rather that the NIH in Bethesda? I live in upstate New York in the beautiful wine country of the finger lakes. I believe Roswell Clinic in Buffalo New York also conducting trials as well. Buffalo is closer to where I live but, I'm willing to travel to where ever the "best" place to go is. Thanks for listening to my ramblings. Maybe I'm just being impatient and my experience is typical - so any words of advice or wisdom will be greatly appreciated. Take care and we safe - and thank you all for taking the time to read my note.
Beverly
PS - I'm willing to leave my contact information here but, I'm not sure if this is acceptable procedure on a forum. I'm rather new to this - I don't even have a twitter account. All my communication is thru email. Bless you all and thanks in advance for any help that may come my way.

[eazyd]

Re: Weekly Poll - Have You Participated In A Clinical Trial?

by eazyd on Sat Jun 08, 2013 1:38 am

^Yeah Beverly, don't leave your contact info in here for the entire internet. Father goes to Dana Farber in Boston, MA. They seem to be on the leading edge of new trials and treatments.. Good luck--