How Can AML Patients Benefit From Support Groups? | Transcript | Acute Myeloid Leukemia (AML) | Patient Power


How Can AML Patients Benefit From Support Groups?

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Beth Probert:              

Jim, I'd like to ask you to stay on this topic for a minute. Could you give any advice about support groups?

Jim Bond:               

Yes.

Beth Probert:              

Is that something that you found to be a great resource in dealing with this kind of anxiety and depression?

Jim Bond:              

Yes, I think support groups are for people who want to go to a support group. Put yourself back 27 years ago when we first we introduced to blood cancer. There were not a lot of support groups available. And we started out with keeping it more to ourselves and our family, and then as we grew comfortable with living an managing the fear, the risk, the anxiety, our circle spread out. But it really was not until we got invited to share our story that our eyes were opened of the power of support groups. And we could see it happening.

One other thing that, Tom, I'd like to mention to you, one of the most effective way to manage fear for my wife and I was late one Sunday night lying in week number six, or something, in the last transplant for AML, and I'm on the ropes, I'm in tough shape. And the phone rings, and it was my myeloma doctor from Boston where we go twice a year, his name's Paul Richardson, he's an outstanding, compassionate doctor.

It was Paul, and Paul said, "Jim, I've just talked to your wife Kathleen at her home," she had just left for the night. And he said, he said to her what he then said to me. He said, "Jim, I know you're in a tough spot, but I want you to know, that we've got other patients here at Dana Farber, who have been through exactly what you're going through, myeloma followed by AML, bad, bad prognosis."

And he assured me that I could do it. And, Tom, what that doctor's phone call meant to my wife and I could have been the difference between getting through this thing, and not getting through it. Giving up, and not giving up.

 And we really believe it's because our doctors have taken the time to help us build a relationship with them. Knowing how busy they are, and how many patients they have, we found the world of oncologists and the nurses and the others, very compassionate people. And it's worth that time to build that relationship whether it's your ongoing doctor, or one that you go out of town for a second opinion with, those relationships mean everything. And the doctors who are willing to take their time, when it's not really on the clock and help their patients, they are doing tons and tons of good for the world that we live in.

So, we've got some other techniques, but those are the things that really stand out to me in terms of managing in this area.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on September 4, 2019