When you first are diagnosed it is a very scary time in your life. If you go to the Internet you can find an OVERWHELMING amount of information, much of which is outdated with quotes of 3 to 5 years for survival. However there are a few of the best sources that the people before you have found to be very helpful.
When newly diagnosed, one of the very best places to find out about Myeloma is the IMF(International Myeloma Foundation) web site www.myeloma.org. This site will provide you with the basic information of what is multiple myeloma, treatments, and a very helpful hot line where you can talk to a well informed myeloma consultant.
The American Cancer Society has a web link that you may also find very helpful at:
The web site MyelomaSurvival.com at the link www.myelomasurvival.com will help you to find a multiple myeloma specialist for your team and provides some great survival data and a listing of some the world’s best specialists.
Another great site is the MMRF(Multiple Myeloma Research Foundation) at the link: http://www.themmrf.org/
After the Initial Diagnosis
Once you have had some time to digest your initial diagnosis, you will want to expand your knowledge of not only what is multiple myeloma and their treatments but also to plug yourself into the “Multiple Myeloma Information Network”. This is an informal network of web sites, myeloma activists and advocates who help to provide an Information Network that helps to disseminate the most up to date myeloma information.
The IMF web site is again a major resource, and you will find a listing of support groups thoughout the country that I believe are essential to improve your myeloma education, as well as provide support, encouragement, and friendship. The link to the list of support groups can be found if you CLICK HERE!
The web site Living With Multiple Myeloma, put together by Pat Killingsworth, advocate and myeloma author, keeps up to date with all of the current myeloma news and is at the link: http://multiplemyelomablog.com/. In addition, Pat has an on line support group every month that he will announce on his site. If a support group is not available in your area you can participate on line. You can email Cure Talk at email@example.com to request to be included monthly on her member list.
The LLS or Leukemia, Lymphoma, and Myeloma Society has a myeloma support group meeting that is a messenger type of meeting that you can join if you call in for their Tuesday support group meeting. You can sign up if you CLICK HERE!
ACOR Myeloma Listserv is an on line patient to patient support program that you can sign up for if you CLICK HERE. Mike Katz, a 20 year survivor, coordinates this excellent patient centric program.
Cure Talk is a web site that has content from myeloma professionals, other bloggers, clinical trial information, and has a lot of great information for the multiple myeloma patient community. You can link to their site if you CLICK HERE or go to http://trialx.com/curetalk/
The Myeloma Beacon is a site similar to Living With Multiple Myeloma and has a forum that provides patient to patient contact with a chat room feel. The Home page offers myeloma news and articles from some very knowledgeable patients. Link: http://www.myelomabeacon.com/forum/
There are so many sites, however that provide you with so much information that your head may never stop spinning. Here we try to whittle it down to a high quality and manageable level. I am now pleased to hand this blog post over to the founder of the web site mPatient, Jenny Ahlstrom.
How to Connect with the world’s best Multiple Myeloma Specialists?
There are many ways that patients can connect directly with myeloma specialists. There are excellent patient seminars, webcast updates from ASH and ASCO and outstanding myeloma webcasts on particular topics. I’ve noticed that almost 90% of the time, whenever patients connect with myeloma doctors we have questions for the doctors that relate to our personal situation. Sometimes we want a second opinion, sometimes we are looking for clarification about our stage of myeloma, our symptoms, side effects or our disease stage. All of the time, we are looking for personally relevant information. More on this later, but first, here is a list of the great resources that are available today, directly from multiple myeloma specialists.
The International Myeloma Foundation web site (www.myeloma.org): The IMF has done an excellent job capturing information directly from myeloma specialists. On their web site under “webcasts” you can find several types of webcasts:There are patient questions answered by Dr. Durie, videos of past IMF patient seminars, videos from past medical meetings like ASH and ASCO as well as international conferences, videos from the International Myeloma Working Group (a group of over 180 myeloma specialists), videos from a nursing board (the Nurse Leadership Board) on myeloma topics, and videos of other myeloma-related topics.
The Cure Panel Talk Show (www.blogtalkradio.com/curepanel): These are monthly interviews hosted by myeloma patient Gary Petersen and others (Jack Aiello, Pat Killingsworth, Nick and Cynthia). The Cure Panel Talk Show interviews top myeloma specialists to find out what is happening in research, like understanding highlights from myeloma conferences or a new therapy. The show also covers related topics like legal or financial issues that patients might face. The Cure Panel Talk Show is hosted by Trialx (www.trialx.com)
The Myeloma Daily (http://paper.li/Myeloma_Doc/1310386431): This is a daily online newspaper with Dr. Robert A. Orlowski as editor. He pulls important study information and myeloma discovery information together and also covers relevant happenings in myeloma. You can subscribe at the above link.
Managing Myeloma (www.managingmyeloma.com): This is a web site that contains videos directly from experts. One of the most helpful links on this site for patients is the Expert Interviews link (http://www.managingmyeloma.com/knowledge-center/expert-interviews). Here you can watch videos directly from myeloma specialists on the latest topics in myeloma. This site is provided by MediCom Worldwide.
mPatient Myeloma Radio (www.mpatient.org): This is a new weekly internet radio show created by myeloma patient Jenny Ahlstrom who believes that we can drive discoveries faster if more of us participate in clinical trials. Because only 3-4% of myeloma patients join trials today, the pace of research is not where it could be if 10% or even 50% of us joined. In myeloma, today’s treatments are yesterday’s trials. In myeloma trials, patients are either getting the “standard of care” or something that is potentially better. She believes we can find a cure and that we are not helpless in our fight against myeloma. Doctors may be driving the direction of the research, but patients determine how fast they can run. You can subscribe to alerts about upcoming shows and posts from past shows by email at this link: http://feedburner.google.com/fb/a/mailverify?uri=Mpatient&loc=en_US“
The Leukemia and Lymphoma Society (www.lls.org): The LLS provides patient support and gathers information from the experts at this link: http://www.lls.org/#/resourcecenter/pastprograms/myeloma/. These are mostly written papers that come from myeloma specialists on a particular topic like a new treatment.
Where do we go from here?
Our future hurdle as a myeloma community is to take this amazing information and simplify it in a way that is personally relevant to each patient. The information can get overwhelming and we may not be at our mental best while on many of the common myeloma medications. When we can sort through this information to find the most relevant information for our kind of myeloma, we are ever closer to finding a cure.
We hope that you find this helpful in your quest to become myeloma literate, and to become your own best advocate. Good luck and may God Bless your myeloma journey/ coauthors Jenny Ahlstrom & Gary Petersen