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How to Cope Emotionally with Relapsed Refractory Hodgkin Lymphoma

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Published on June 11, 2013

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Transcript | How to Cope Emotionally with Relapsed Refractory Hodgkin Lymphoma

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.

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:

So, you as practitioners, and these ladies as patients, are now on a journey together, a relationship to beat the disease.  Meredith, you're someone who found out that the cancer was coming back.  Tell us that story.  What did you feel?  When was this after finishing your initial treatment? 

Meredith Wooten:

It started just three months after the end of my treatments, and I felt a lump right up above my collar bone.  And I thought, what is this?  No way.  And I went to my oncologist and I had asked him, I said, is it back?  And he's like, it's so small, we can't tell unless we go get a scan, but my husband had just switched jobs so our new insurance hadn't picked up, and I had to wait a few more months for it to kick in. 

And finally we went in there, and I had my PET scan and he said, oh, it's back.  There are two by my collar bone, and it had spread to my spleen.  And he said, our next step is a little more aggressive treatment than the ABVD I was on the prior year.  He said, well, we're going to do ICE (Ifosfamide, Carboplatin, Etoposide), and then you will go down for a transplant.  And the state of Nevada doesn't do transplants, so my choices were Utah or California, as the closest ones.  I mean, I could have gone anywhere, but those were the closest to me.  So I chose UCSD. 

Andrew Schorr:

You had relatives and friends there. 

Meredith Wooten:

I grew up in San Diego, it was nice to have the support system down there. 

Andrew Schorr:

Now, being told that you have a "good" kind of cancer, and maybe 90 percent, or more of the time, the treatment that you initially had can beat it, and you were so positive, did you just feel cheated, angry, violated? 

Meredith Wooten:

I was really angry.  I know I had told everyone the first time around that they had 24 hours to cry.  I think I cried for 24 hours.  I was so mad.  And it wasn't a sad cry.  It was an angry cry.  I beat it.  I went against all the odds to even get this disease, and I'm going against all the odds to have it come back, and I was just so mad that it would happen to me, again. 

And as I was dealing with that, and all the emotions of having to tell people again, because I had calmed their nerves by saying, this is a curable cancer, don't worry, I got this, to having to say, just joking.  I have to go through it again.  And then I wanted to keep everyone at bay and not have to worry about it, and not have to worry about me, because that's my job as a mom, to keep everyone calm. 

Andrew Schorr:

Right.  But let's be realistic, a mom, a wife, relatives and friends, and having them be positive, trying to be positive for yourself and then—but did, quite frankly, fear of death creep in, then? 

Meredith Wooten:

Never.  Not once was I scared that this was it.  I held onto the fact that this is a curable cancer, and if I have to take little more aggressive steps to get there, I'm going to beat it.  And that has always been my motto from the get-go. 

Andrew Schorr:

You still had faith in medicine, that even if you had round two, if you will, that it could work. 

Meredith Wooten:

Yes, always.  Oh, the glass is always half full.  You have to be that way.  Otherwise, it gets to you. 

Andrew Schorr:

Suzanne, you went through this too.  When did this happen to you, cancer rearing its head again, and how did it show up?

Suzanne Hyte:

Yeah, about six months after my last treatment, I also found a little lump above my collar bone, and I also remember thinking uh-oh, because as a cancer survivor you always have to be very vigilant about things like lumps, in this area.  I went and talked to the oncologist about it, ended up having some biopsies done.  Ultimately it was the general biopsy, so it was eight months after I was told that I was in remission that it was confirmed that it had, in fact, returned. 

The first time I got the diagnosis, I had just started law school.  I had made the decision, at that point, to defer law school while I went through that first round of chemotherapy.  This time I had just completed my first semester, full-time of law school so when it returned I was like, well, do I put it on hold again, do I go part-time?  What should I do?  I did, ultimately, make the decision to stay in law school.  I went part-time, but I was told I would get the ICE (Ifosfamide, Carboplatin, Etoposide) treatment, and then I would need a stem cell transplant, and I ended up going to Utah for that transplant. 

Andrew Schorr:

Where Dr. Sweetenham is. 

Suzanne Hyte:

Exactly. 

Andrew Schorr:

Dr. Sweetenham, so both these ladies felt a lump.  Is that typically, what's noted by the patient, sometime after treatment, if in fact the Hodgkin is coming back? 

Dr. Sweetenham:

Yeah, that's pretty typical.  Usually, when the lymphoma comes back, it comes back with the same kind of symptoms that it had right up front.  If you're one of that group of people who get, what are so-called B symptoms, night sweats, fevers, chills, the kind of thing that you're often asked about by your oncologist.  If the disease started with those, if you had those symptoms at presentation, then often the return of those stems is the first sign that maybe the disease is coming back. 

But if you didn't have those and started out with lumps in the neck or in the groin, that's most commonly the way that the disease comes back, with the same kind of symptoms. 

Andrew Schorr:

Meredith, someone might feel that they failed, if the first treatment didn't work.  That they failed.  Did you ever feel that way, that you did something wrong, that you let people down? 

Meredith Wooten:

You always have that thought in the back of your mind, knowing that it's totally ridiculous.  You're like the carrier of this thing.  You're transporting it, type of thing.  You can have the best mindset, everything, but sometimes the medicine just isn't going to get it.  As long as you can stay positive, and keep going, and let the doctors fix you, it's going to get better.  It has to get better. 

Andrew Schorr:

John Sayler, so you have patients like these ladies who come, and you told them initially, we're going to work with you to beat this cancer, and often, most often, the treatment you start with, does it. 

But then they come to someone, like you, and there are indications it hasn't.  How do you get them through that and prepare for, what's yet, more aggressive treatment?

Dr. Sayler:

I don't see it as a pessimistic diagnosis.  Sure, the wind is out of your sails, the air is out of the balloon, and like you mentioned, it's, how this can happen again.  It's a process of communicating to the patient, all right, we had our shot at 90 percent.  You're just being a little tough now, and you're in that 10 percent category that we need to treat a little bit differently, a little bit more aggressively, to get your disease under control, to get you to that point of cure.  You're young, you're vibrant, and you’re active.  This is something that we need to act aggressively with.  This is something that we need to get ahold of quickly, and allow you to move on.

Andrew Schorr:

Suzanne, Meredith said she didn't feel that she'd been failed by the medical system.  She felt, still, it was going to work and she didn't think about death.  What about you? 

Suzanne Hyte:

I was the same way.  I remember my dad mentioned the possibility of death, but even then I still felt like that wasn't going to be my path with this disease.  I felt like I had received very good care from the doctors and others, and I tried to remain very hopeful. 

Andrew Schorr:

Now, in both your cases, transplant comes up where you live in Las Vegas, you need to go somewhere else for that.  You were going to Utah, you were going to San Diego, because of family connections there.  It's a disruption in your life, for sure.  Okay.  How did you get through that?  You had family and friends in San Diego, that was part of your choice of going there, and get your head around this, yet, more aggressive treatment? 

Meredith Wooten:

Wow.  Well, going to San Diego I prepared.  I kept telling my kids I had to go down for a collection first, where they put an apheresis line in me, and they collected my stem cells.  I was gone for two weeks for that.  And I said, okay, I'm going to be gone for two weeks.  We'll talk on the phone every night.  Say good night, say good morning. 

And then I came home and I said, okay, the next time is the big one.  I'm going down for six weeks.  And we kept talking about how long six weeks was, and trying, and trying, and trying, and I'm trying to prepare them, and I didn't prepare myself.  I was preparing for the side effects of the transplant, from the high doses of chemo, from being neutropenic.  When your levels drop really low and your system is kind of wiped out, you're really weak and tired.  And I was preparing myself for that.

I did not prepare myself for the time away from my children and how hard it was on me.  And I couldn't Skype with them, because I didn't want them to see me on video crying, because every time I talked to them I was full of tears, and that was the hardest part of the last two years, just without a doubt, was being away from my kids and my family and friends up here. 

Andrew Schorr:

How low was low? 

Meredith Wooten:

Lots of tears.  Lots and lots of tears, but not fear, just sadness of being away from them.  I prepared myself for everything except for that.  I didn't realize how long six weeks would be.  But I was in the hospital for just under three weeks.  I got out and that first weekend my husband brought them down to see me, and I actually got to keep the twins, the ones that are younger, that aren't in school, they got to stay with me while I was recuperating down in San Diego, so that was really nice.  But those, about, two and a half weeks, three weeks, were the hardest, lowest part of everything. 

Andrew Schorr:

How about for you, Suzanne?  Again, more aggressive treatment, away from home? 

Suzanne Hyte:

Yeah, for me, Salt Lake City, which is where the Huntsman Center is located, was a good location for me, because I also have a lot of family up there, and that definitely made a difference for me.  When I was in the hospital, my mom was able to stay with her sister, within 15 minutes of the hospital, and then, when I was done, I was able to go—I still needed to stay by the hospital, but I didn't need to be in the hospital, inpatient—I was also able to stay with my aunt.  And it was just wonderful to be able to have family close by for that support and visitors and that type of thing.  That definitely made a big difference for me. 

I was, also, in the hospital for a little under three weeks.  It was 19 days total, and then a couple weeks later I began radiation therapy, and had that for a month, I was up in Utah for quite some time.  But I feel blessed.  I was actually able to complete my law school finals, and then one week later, go up and begin all the high-dose chemo and stem cell process, things ended up working out that way. 

You really can't plan for those things.  I remember when I was initially talking to the doctors at the Huntsman Center, I was in school, so I was, okay, so if my chemo is at this point then I can do this?  And they were like, well, it all depends, because if your white blood cell count is too low, then you can't get the next round, so they're, it's really hard to plan very specifically with this, which is something that I learned, that things did work in my favor for that, basically I spent most of the summer in Utah, but then I was back full-time in school by that fall. 

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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