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Becoming a Proactive Patient

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Published on July 24, 2015

Transcript | Becoming a Proactive Patient

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. 

Andrew Schorr:

Dr. La Verne, so let’s talk to you for a minute. You, too, have had a wild ride. So how do you view the future? 

Dr. Harris:            

I view the future that there are now options and possibilities that were not there when I was initially diagnosed. 

I view the future as do now what brings you the most joy, and your future will come as it comes.  So I have a very optimistic view of the future because of the fact that, if you are newly diagnosed, you have so many options.  There are so many new drugs and so many new clinical trials coming out that this is not the same world it was in 2012 when I was diagnosed.  And I was basically told you can’t qualify for a bone marrow transplant because you’re bi-racial, half-Japanese and half-German. You have less than a 1 percent chance.  You are chemo resistant. And the only option you have is a clinical trial. But I’m really sorry. 

There aren’t any for 17p-deleted folks. And so that was my pat on the back that I got. And I just remember saying I’m going to try to accept something that is really unacceptable in my mind.

And I’m going to be a proactive patient. And I’m going to do everything I possibly can do to find out what I need to do to help myself.  And I could not have done it without having a family, my husband and my children, and my grandchildren, and all of my good friends. I belong to cancer support groups, plural, both online and face to face. And we exchange information. And please don’t be an ostrich and stick your head under the sand. Find out everything you can about yourself. And then your future is going to be very bright, because you’re going to be looking at possibilities.

Andrew Schorr:                  

Okay. Good points.  So I want to talk to Shailja.  So let’s talk about communication on clinical things as well. So you want to hear from people related to how they’re doing.

For instance, you worry about infection sometimes for somebody with CLL. You want to know if they have a fever, if they’re having pain or certain discomfort. So let’s talk about communication with you and Dr. Munoz and the team so that people feel in partnership and not isolated. What do you tell them?

Shailja Amin:      

So I tell patients let me know. We want to know what’s going on, if there are any drastic changes in your health from the patient or the caregiver, if you have a fever of above 100.4. We want to know about it, so we can guide you in which direction if this needs to be taken care of at the Emergency Room or whatnot.  If you’ve got uncontrolled nausea, uncontrolled vomiting, that’s where the medications we’ve given are not working.  Constipation, diarrhea, anything, we want to know about it.  And if there is something drastic that requires hospitalization, I definitely communicate with the physician just to keep the physician aware that this is the plan, and this is what we’ve done.

If there’s something that we can handle in the clinic, I immediately bring the patient in for an appointment and communicate with the physician what the issues are at hand and what the plan is going forward.

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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