Health Topics

Clinical Trials and the Evolution of Transplant

Dr. O'Donnell:

Now you're getting into questions involving current?day research.  So, you know, the transplant field is continually evolving.  Ronni got a haploidentical transplant, Jessie got double?cord transplant.  We have ventured into those areas because we wanted to provide the option to people who didn't have a match.  The expectation is that maybe the outcomes wouldn't be as good, but I think both in terms of survival and graft?versus?host disease it may turn out that they are just as good.

Andrew Schorr:

Wow.  Wow.  This is a field that continues to evolve.  So what would you say to someone as far as seeking an opinion of someone like yourselves?  People come from all over the world, and so it sounds like you have a lot to discuss with them, evaluating their situation and trying to see maybe, sure, is there a perfect match or if not what are these other options, and it may be there's a clinical trial they can participate in that may be good for them hopefully as it has been for our ladies here, but also help answer these questions. 

Dr. O'Donnell:

That's correct.  At this center of course we're always trying to improve on what we do, so we're always trying to ask patients to enroll in clinical trials.  And I have to say how grateful we are at a research center that's continually trying to improve on our transplant methods that patients like Ronni and Jessie are really willing to be the pioneers, very courageously be pioneers to help us develop these new methods that, when they're successful, we can then bring to larger numbers of patients.

Andrew Schorr:

Let's talk to the ladies about that for a second.  Ronni, people may be listening, and they hear the word clinical trial and they just, you know, they're overwrought about the seriousness of their illness, maybe going to a city far away and they hear about these approaches of the clinical trials.  You were in one and then you were in another.  What would you say to people about participating in a clinical trial?  For you, it's turned out to be lifesaving. 

Ronni:

Well, you know, I actually was one of those people who was deathly afraid of clinical trials because the first thing you think of is I don't want to be a guinea pig.  But once I looked into it a little further and understood what was going on then I wanted to be part of the??part of a clinical trial because it really is the most up?to?date??I mean, this is what??this is what can help me today, not things that were developed years ago which for many, many people are perfectly curative for them, but in my case it just wasn't working out.  So I say absolutely consider clinical trials, absolutely consider traveling away from home. 

It's scary.  It's overwhelming, but don't just stay, you know, in your neighborhood and think that there's nothing else available to you.  There are things out there.  You just have to be willing to look, and quite frankly you have to take control of your own health.  I found the trials at Fred Hutch and brought them back to my doctor.  My doctor didn't give me the options.  I found them and brought them to him.  So nobody cares as much about you getting better as you do, so you have to be proactive and be perfectly willing to consider clinical trials. 

Andrew Schorr:

Well, we call this program Patient Power.  That's what it's all about.  Jessie, how about you?  You're a scientist yourself, so??and you were very sick, and so it was a big deal to, you know, with a young, young child to make this move and also be patient number one.  Did you go into that with some confidence that in thinking about the science behind it just seemed like it could be exactly what you needed? 

Jessie:

Yes, I did actually.  I read a lot of the journal articles, the journal literature before I went to transplant and before I even made the decision to go to Seattle, and that really helped my confidence in the methods.  Another part of me just as a scientist could look at the science and say, wow, this is a really interesting idea, not even thinking of myself in the mix.  But thinking from a more personal standpoint I also realized that we had gotten where we are in cancer therapy through clinical trials and it was more of an opportunity to have something available to you that wasn't available to anybody else yet. 

So I was??I was pretty excited actually to be??to be part of a trial, and it was a big part of the reason that I ended up going to Seattle.  Not to say that there wasn't some element of fear involved, but I think that would be happened even if I would have stayed at home and had a conventional transplant, so, yes, I would just have to echo what Ronni said and just, you know, to really do your own research and take control of your own treatment.

Andrew Schorr:

Well, I know, you count your blessings every day and to be there with Luna, and you're still certainly very much in the recovery mode, so, you know, hopefully things will continue to go well.  And I know how scary it must have been to go to the emergency room for one thing and then out of the blue be told it's an acute leukemia.  So hopefully the storm clouds are all behind you now, and we wish you all the best, Jessie.  Anything you want to say to Dr. O'Donnell publicly here? 

Jessie:

I just want to express my gratitude, and thank you so much for the treatment in the hospital.  And I don't feel as though I was always the easiest patient, so I wasn't a patient patient, so I just really appreciate his help and he had a very calming presence, and it really is very helpful for me.  And the work he's doing is just??it's fantastic, so thank you.

Andrew Schorr:

Well, I'm glad we got you all together.  Ronni, I want to wish you all the best and your dedication as being a patient advocate.  You, and your sister does it with you, right? 

Ronni:

Yes, she does. 

Andrew Schorr:

What a team.  She donates to you, and you two work together to help others.  That's really a cool story. 

Ronni:

Actually I'm a very fortunate girl, and I know that.

Andrew Schorr:

Okay.  Well, all the best.  I want to give the last word to Dr. O'Donnell.  So, Dr. O'Donnell, you talked about this being an evolving field, and you talked about certainly the partnership between people like Ronni and Jessie as they work with you and other scientists.  You mentioned Dr. Delaney.  But it sounds like where we are now is a good place as far as transplant goes.  Not that we can't do better, not that we can't limit side effects and lower all the concerns that can go with it, but it sound like it's accelerating. 

Dr. O'Donnell:

Yes, I think that, you know, now that we're at a point where we can literally offer a transplant to any patient, now the issues are how can we make them safer, more effective, so that we don't even have the problems with chronic??or acute or chronic graft?versus?host disease, infections.  So there's a lot to be done, but I think we're making a lot of strides.  I think that this is really a time in stem cell transplantation that it's a pretty mature field, and a lot of progress is still to be made but a lot of progress, incredible progress has been made, and it's all??it's really by virtue of wonderful patients like Ronni and Jessie, and we're??just to know that they're doing well is all the??we're very grateful for that.

Andrew Schorr:

Well, I know that I speak for many, many people locally, around the country and around the world who thank you and your colleagues at Fred Hutchinson and the Seattle Cancer Care Alliance for the work you do and the work you will do to make

this even better.  Dr. Paul O'Donnell, medical director for the adult transplant service at Fred Hutchinson Cancer Research Center and Seattle Cancer Care Alliance thank you, very much, for being with us today. 

Dr. O'Donnell:

Thank you all.

Andrew Schorr:

All right.  Well, this is what we do on Patient Power is connect you with leading experts like Dr. Paul O'Donnell and also leading?edge science as we've talked about transplant and where we are now and the people it benefits like Ronni and Jessie.  Thanks again for being with us.  I'm Andrew Schorr.  Remember, knowledge can be the best medicine of all.   

Please remember the opinions expressed on Patient Power are not necessarily the views of Seattle Cancer Care Alliance, its medical staff 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.