We are international
Donate
publications TEXT SIZE   


June 2001 Volume 4, Issue 5:
A PATIENT'S PERSPECTIVE
By Cathy Lebkuecher
Chicago Patient and Family Seminar
06.01.01

Going to an IMF Patient & Family Seminar has become like going to a family reunion. My first seminar (Virginia 1994) was four months after diagnosis and I’ve been to six others since then, mostly accompanied by my husband, Andy. At each seminar, there is something new to be learned or a new slant on an old topic. There are always familiar faces, many new faces, and memories of the faces that are now missing.


Although Andy and I had planned on going to Chicago for several months, when he ended up having triple bypass surgery one week before, I was certain that this was one we would miss. Andy, however, had a different idea; he was discharged from the hospital on Tuesday and told me he was “perfectly OK to stay alone.” Knowing the male propensity for overstatement, I arranged for him to have weekend company while I was away and off I went to Chicago to meet my son, Drew, who was finally able to attend his first IMF seminar!


I had hoped to sit in on the Chicago support group session Friday afternoon, but by the time we arrived and registered at the hotel, the meeting was more than half over, so we spent some time shopping before returning to prepare for the evening’s festivities. 


The IMF staff are unequalled at making all participants feel at home and visiting the registration desk is like old-home week. During the reception, we spent time greeting old friends and as the dinner seating began, we sat at a table with new survivors, helping to make some first-time attendees feel welcome and answer some basic questions about MM. The treat came after dinner when Susie introduced Tom Bay and he enthusiastically shared with us his perspective about life as demonstrated by his ‘left wall/right wall’ paradigm. 


Saturday started with a full buffet breakfast. Afterwards, Susie Novis began the day by welcoming all attendees (a show of hands indicated that at least half of those present were first time attendees). Promptly at 8:45 (not!), Dr. Brian Durie presented ‘Myeloma 101.’ This turned out to be the talk that most impressed Drew. As he put it, “a seminal course in understanding the disease.” This was followed by ‘Bone Disease: Diagnosis & Management’ presented by Dr. William Dalton. After our mid-morning break, Dr. Durie spoke about ‘What Tests are Needed to Monitor the Disease.’ A new addition was an overview of different X-ray and scanning modalities. Dr. Durie impressed upon us the need for a strict protocol with skeletal bone surveys – a valid comparison could only be made if the same protocol was used each time a survey was done. He also spoke about spiral CT imaging, a fairly new technique that covers larger body areas.


Dr. Dalton’s next talk was about ‘New Therapies’ which included PS-341 (now LDP-341), ImiDs, 2ME2, Neovastat, R11 5777 (FTI), Genasense (Bcl-2), Trisenox (arsenic trioxide) and SU5416. Much in this talk was highly technical, but the message was clear: there are many new drugs being developed with many different mechanisms of action. For MM survivors, this may well translate into a way of controlling multiple myeloma, and perhaps pave the way for a cure. There is hope in the air!


It was a treat for me to listen to Dr. Jayesh Mehta speak about ‘The Role of High-dose Therapy in the Treatment of Myeloma’ since I have corresponded with him and followed his career on the Internet. In his breakout session, he also indicated the circumstances in which he feels PSCT or allograft would be the best option (i.e. high LDH). Dr. Seema Singhal spoke on ‘Treatment of Multiple Myeloma,’ including thalidomide. (4 weeks – minimum trial; 4 months – reasonable trial). 
Before lunch, the Patient Panel shared their experiences with MM. There was representation by a very long-term survivor Judy Goldman (over 10 years), a long-term survivor (me – almost 8 years diagnosed IIIA-lambda), and Tom Bay (about 14 months). This panel was followed by the presentation of the Outstanding Service Award. It was very fitting that the award was given to Judy Goldman, founder of the Midwest Action Committee, the Chicago area support group network. Judy received a standing ovation in acknowledgement of all that she has done for the myeloma community.


Dr. Paul Richardson spoke about ‘Novel Biologically-based Therapies for Myeloma.’ Much of this presentation dealt with target areas of current research, mainly altering the myeloma cell surface protein and decreasing myeloma cell binding to the bone marrow.


After the afternoon break, I visited the breakouts where Drs. Mehta and Singhal were answering questions (high-dose therapy and thalidomide, respectively). Drew spent the entire time in the Caregivers Need Care Too breakout moderated by Susie Novis. He was impressed by the environment created that allowed caregivers to express exactly what they were feeling. He felt that this was painful but cathartic – an invaluable time. 


What impressed Drew the most about the weekend was the way that the doctors were able to reduce the complex science of the disease to language simple enough for folks to understand.


The seminar was over all too quickly. There never seems to be enough time todigest all the information presented or talk with other attendees… perhaps that’s why we’ll be at the next one, also!


 related articles