Dr. Durie

Last week I had a phone consult with Dr. Durie. For those of you who haven’t heard of him, he is a world-class MM doctor. In fact, he developed the first staging system for MM, called The Durie-Salmon Staging System.

Dr. Durie said that my MM appears to be low grade, or slow moving. This made me feel better. It means I could have many years. :) He also believes that MM treatment shouldn’t be worse than the disease. For example. when someone has a low grade MM — one that doesn’t produce symptoms — harsh chemo may not be the ticket. For me, this is the case. I seem to be very sensitive to drugs, therefore my doctor has concerns about high dose chemo. There’s often talk about high dose chemo and stem cell transplant (autograft) on the mailing lists. For me, this isn’t the answer just yet. I told Dr. D. I feel a lot of pressure from my peers concerning SCT and even tandem SCT. He made me feel better about the choice I’ve made, which is not to have SCT at this time or in the foreseeable future. Wow. That word looks like it has too many Es. I have to mention that Dr. O. has never pushed me towards SCT either. He is respectful of my wishes.

We also talked about Zometa. He suggested that I switch to Aredia. Zometa has had some adverse publicity concerning osteonecrosis of the jaw. If you haven’t heard of this before, and you receive Zometa, please read this.

Dental Health and Osteonecrosis of the Jaw, by Novartis, the manufacturer of Zometa.

You may have seen an article in the news touting the benefits of tandem SCT. Well, the title says that, but it’s misleading. The title says, “Study Confirms Effectiveness of Double Autografts in Multiple Myeloma.” The article says, “There is evidence that this prolongs the time to disease recurrence, but there is little evidence that it improves survival, especially if a second transplant is carried out at the time of disease progression.” And, “the primary beneficiaries of a second transplant were those with less than a very good partial response to the first transplant. Patients who had a CR after the first transplant did not have an improved outcome.” Also, “This study confirms the results of the French trials showing that a second transplant benefits primarily those who are not in CR after the first transplant. This indicates that patients who achieve a CR with the first transplant can delay the second transplant. However, it may not be a good idea to delay the second transplant for poor responders, as both the French and Italian study suggest a compromise in overall survival.” Some people (including doctors) will not read these comments in the abstract, and they’ll push patients into tandem SCT, whether they’d benefit or not. Please do your own research and decide for yourself.

I’m only trying to say that SCT is not right for me at this time. If that’s your chosen path, and you’re committed to it, then it is right for you, and that’s what’s important to you!

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