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Report from the Rome 2008 Patient and Family Seminar
This seminar was the largest the IMF has held to date in Europe, with over 330 people in attendance.

The IMF in conjunction with the Italian association AIL held the 6th annual Patient & Family Seminar in Italy. It was held on Sept. 17th at the Palazzo Dell’Arte Antica, a very historic venue, built in the 1930’s by Il Duce Mussolini. The architectural design of the building was to symbolize the monumental strength of the new empire. Today it remains an imposing edifice and proved to be the perfect venue for the seminar, based on the determination and strong spirit of the attendees. This seminar was the largest the IMF has held to date in Europe, with over 330 people in attendance.

Rome Seminar 2008

The day opened with a warm welcome from Maria Luisa Rossi Viganò, vice-president of AIL, who gave an overview of their activities. The IMF was very honored when she acknowledged and stressed the importance of the collaboration that has been forged between our two organizations.

Maria Luisa Rossi Vigano
Maria Luisa Rossi Viganò, vice-president of AIL

Susie Novis gave a brief welcome and also noted how important it is for the IMF to continue to collaborate with AIL, and how strong relationships like these only help us to achieve our mutual missions to improve outcomes for patients.

Dr. Durie gave the first lecture entitled Myeloma 101, which stressed the importance of forming a relationship with your doctor, so patients can have open discussions about what treatment is right for them. He also noted that managing stress is critical, as is a good diet, exercise, getting plenty of rest, and how chocolate and red wine might be beneficial for patients. The attendees were particularly pleased to learn this point! He closed by noting that you should not be afraid to ask for what you want, and do things that make you happy.

Dr. Durie
Dr. Brian Durie with Dott. Mario Boccadoro

Prof. Avvisati was the next speaker. The IMF has a long history of working with Prof. Avvisati, as he was one of the first people to join the IMF’s Scientific Advisory Board back in 1990. So it was wonderful to see him again, and his lecture on Standard Therapy for patients over age 65 was very informative. He noted that in Italy 66% of patients are over age of 65, therefore his talk was very important for this large group of attendees.

Dott. Giuseppe Avvisati
Dott. Giuseppe Avvisati (left) with Dott. Boccadoro

There was a lot of discussion among the attendees on the alarming lack of knowledge their treating physicians have about myeloma, and the need to educate these doctors so the treatment they get can allow the patients to live well and longer.

Dott.ssa Maria Teresa Petrucci next spoke about the role of transplantation in the treatment for Myeloma. She discussed both the treatment strategies and procedures for both autologous and allo transplants.  She very nicely summarized the pros and cons for transplant which led to a very lively discussion.

Dott.ssa Maria Teresa Petrucci
Dott.ssa Maria Teresa Petrucci

After lunch the interactive questions were posed to the audience. This session always produces a lot of very interesting data on treatment trends as well as getting the patient’s perspective on current treatment.

Dott. Robin Foa
Dott. Robin Foà also addressed the seminar attendees.

Dott.ssa Patrizia Tosi next presented supportive therapies, including the role of bisphosphonates. During the interactive session 16% of the patients indicated that they have been diagnosed with osteronecrosis of the jaw. She also talked about the treatment for anemia and the beneficial role of eritropoieten – which is still fully available for use in Europe. Pain medication needs special caution so that the kidneys aren’t damaged with the use of non-steroidal medication, such as Motrin, Aleve, and Advil for example. She pointed out that skin patches and oral pain medication delivered on a stick that patients can suck on have shown to be very beneficial. In closing she noted that taking acyclovir as prophlytic treatment along with VELCADE can be helpful.

The session on Novel Terapies was presented by Dott. Tommaso Caravita. He began by discussing the mechanism of action of the various new agents, and then showed the advantage of using them. He showed the three new agents - thalidomide, Revlimid and Velcade as being the “Three Musketeers,” hoping that the three together would prove better than each alone. A particularly telling image was a split screen with a photo on one side of the atomic bomb and on the other a plane dropping a targeted bomb. And the final image he used to make his point about how far we’ve come with novel agents was one side of the screen showing a cartoon of a patient in a hospital bed with an i.v. in their arm, and on the other a patient holding two pills in the palm of their hand and a glass of water in the other. It was a very telling image of what once was and what is now.

The final presentation of the day was a session on quality of life given by Dott. Fabio Efficace. He stressed the importance of understanding the patient’s perspective. Patients are surviving longer but what are they doing with the extended survival time? Are they going fishing or spending it in the hospital? There has been much more interest in quality of life and since 1990 there has been a huge rise in the number of published papers on this topic. But what does this mean in regards to patient’s quality of life? Does it mean they have more time with the family? Or are they relaxing on a vacation? Or are they undergoing treatment? Are they better physically? Are they able to be active socially and what about their mental health? There are ways in which doctors can measure these factors but the big question remains how to balance the side effects from treatment with the ability to lead the most normal life possible and remain positive about the future.

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