The Myeloma Alphabet Soup Handbook
Dr. Berenson's Talk

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June 23, 1998

Dr. James Berenson gave a myeloma talk at UCLA yesterday and I can't give you a verbatim report since I don't take shorthand and I don't have courtreporting skills but I thought it might be useful to recount the more salient points of his speech.

He began with the pathology of MM which I think most of us are fairly familiar with and then he continued with some interesting information on suspected causes of the disease. He does not think there is an hereditary factor but he does feel that environmental exposures could be a culprit. eg.benzene,solvents ,radiation etc. He pointed out that in Calif., people who were employed in aero-space are over represented in the myeloma population. In fact, three out of the twenty engineers who worked on the Galileo project have developed MM. He does not rule out the role of electro-magnetic fields here, and in fact he remarked that he does get a little anxious sometimes about the hours he spends in front of a computer. Also, to whom this might concern---several women with silicone implants have presented with MM. Mice which are injected with silicone get MM.

He then addressed the signifacance of KSHV. It has been found to be present in 70% of MM patients, although it differs genetically from the virus found in AIDS. It has not been found in spouses and family members of MM patients. An interesting statistic is that in MGUS roughly 25% harbor the virus and usually roughly 25% of MGUS patients go on to develop MM. What if it turned out that the 25% who had the virus were the 25% who developed MM. EBV is also suspect and has been found in the dendritic cells of some MM pts.

He declared that he does not use melphalan on any of his pts any more, considering it to be too myelo-suppressive and instead uses high dose steroids along with aredia of course. He feels that once tx has begun all pts. should be on steroids for life at a lower dose. He has found that long term steroid use weakens the bones of "normal" people but does not have this effect in MM. Cataracts are a side effect and in a small number of people diabetes is a result. He feels though that Melphalan is responsible for secondary leukaemia in myeloma.

He does not feel that double transplants are any improvement on one alone. If tandem transplants are done he feels that the longer the period of time between the two, the better the prognosis for longer survival.

He endorses the "Go slow, Go easy rule" for smoldering and indolent MM and basically said that in the absence of symptoms he would not treat, in most cases, but certainly would monitor.

There are more kidney problems found in lambda light chain and Dr. Solomon in Tennessee is working on this in the hopes of forestalling damage.

He holds out great hopes for the success of immunotherapy being the big break in this disease. His identical twin is working on this in Chicago. In lay man's terms this involves taking the patients white cells, stimulating and boosting them with some "beads" and returning them to the patient to fortify the immune system and enable it to kill the MM cells. He ended by exhorting us all to take the least toxic route possible and hang in there for the cure which he is confident is coming. Immunotheray has shown measurable success in lymphoma.

Finally and anecdotally, the woman in the chair next to me was in Dr Berenson's zoledronate trial. No data out yet of course, but her only side effects have been mild muscle cramps and mild headaches for a couple of days after it was administered.

An afterthought on aredia. Dr.Berenson said that although not certainly proved at this point when pts take aredia for several months and then stop, things stay stable with the bones for a few months but eventually the bone resorption resumes at a faster and more furious pace than pre-aredia. Hence another reason to keep up aredia.

I promise this definitely my last performance today, but I was most surprised to learn that in the UK they do not use any steroids at all, when giving chemo. Can this be true?

Love to all,
Celia --

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