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Managing Remission After Treatment for AML

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Published on May 20, 2020

Key Takeaways

  • The rule of thumb for AML is that each year a patient remains in remission, there is a reduced risk of relapse. 
  • "Remission" is variable and dependent on how it is defined and measured. Ask your doctor to explain what "being in remission" means in your case. 
  • Each patient's journey is unique and even after achieving the goal of remission, anxiety or sadness is normal. Speaking with your doctor or a therapist about your emotions can be very helpful.

You're in remission! Now what? Join AML patient and Patient Power host Steve Buechler, AML patient Ilana Massi and AML expert Dr. Uma Borate, as they discuss the treatments that helped them achieve remission and the very different stories that followed. 
 
Steve and Ilana share how gratitude and volunteer work with the AML community has played an important role in each of their lives and offer powerful advice on dealing with anxiety, managing expectations, and finding passion and purpose in the "new normal."  Dr. Borate explains what it means to be in remission and how each AML patient's remission  journey can vary.  Watch to hear their perspectives.

This is a Patient Power program. We thank AbbVie Inc. and Genentech, Inc. for their support. These organizations have no editorial control, and Patient Power is solely responsible for program content.

[Due to extreme load on our website and Zoom platform, viewers may experience a time delay between the audio and video of the interview - please note the transcript can be read below.]

Featuring

Transcript | Managing Remission After Treatment for AML

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.

Steve Buechler:
Hello, and welcome to Patient Power and today's program on managing remission after treatment for AML. I'm Steve Buechler, and I'm coming to you today from Eden Prairie, Minnesota where we have a nice sunny day, and our temperatures are struggling to get into the low 50s. I don't think we're going to quite make it, but in Minnesota, if we get a sunny day, we're happy. I'm an AML survivor. I received a double cord blood transplant in 2016, and I'll be sharing some details of my story later.  

But I've already been a guest on previous Patient Power webcasts, so I want to feature our guests front and center. Today we are joined by Dr. Uma Borate, who is an assistant professor of medicine at Oregon Health & Science University. She's also, as I understand, a veteran of these webcast webcasts, so it's good to have you back. You're joining us I believe from Portland, Oregon. Welcome, Dr. Borate, and how are you doing today?

Dr. Borate:
I am doing great. Thank you. Similar to your story, we have a nice sunny day. We've made it into the 60s, 70s, and even the 80s by now, so this is a really good day for us here in the Pacific Northwest.

Steve Buechler:
Very nice. All right. Now a very special invitation to Ilana Massi. She is an AML survivor who had a stem cell transplant in 2015, and she is coming to us from Southern California. Welcome, Ilana, and how are you doing today?

Ilana Massi:
I'm doing well, Steve. Thank you. I live in Thousand Oaks, California which is about 50 miles north of downtown LA. We've got sunny weather, but it is very hot here. We're having unseasonably warm weather. It's going to be about 87 today.

Steve Buechler:
Wow.

Ilana Massi:
It's hot, and my grandkids are coming over to swim, so I hope that you don't hear any background noise during this project.

Steve Buechler:
Okay. Well, that concludes today's weather report. We got that done. Ilana, I'm wondering, can you start us off with giving us just kind of a quick overview of how you got into remission after your transplant occurred?

Ilana Massi:
Okay. I'll just give you the story of how I got into remission before, and then I was able to receive a transplant. I was diagnosed in October of 2014. I'm a nurse by background, so, of course, was a voracious devourer of information unlike some patients. Unfortunately, I had a lot of poor prognostic signs when I was diagnosed. I was almost 60. I was FLT3-positive. I had a very high white count 107,000 at diagnosis, and I really didn't have any specific symptoms.        

About a week before, I developed a dry cough that wouldn't go away. Then a fever is what prompted me to go to the ER. I really thought I had pneumonia. When they discovered my high white count, I looked at my husband and said, "I have leukemia." They had a very difficult time getting me into remission. It took actually five different courses of chemotherapy. Finally I got into remission and had my transplant in February of 2015.          

My donor was unrelated mismatched, so really the transplant immediately took. I had a very easy time with the transplant and actually did quite well. I've been in strong remission ever since. Last February, I've passed my official fifth anniversary, which is a big milestone for AML patients. That's my story very briefly.

Steve Buechler:
Wow. Okay. My story was mostly different from that in that I was also very asymptomatic when I was diagnosed. I just went in for a routine physical, and my doctor said, "Your white blood cell count is abnormally low. I'm going to send you to a hematologist." Well, one thing led to another, including a bone marrow biopsy. And they said, "Yep, you have AML. We're going to start you off on the standard 7+3 treatment." I did get into remission on the very first attempt, which bought me some time, and I was able to look at my options and opted eventually for a double cord blood transplant.

They didn't give me really precise numbers. They just said, "We have some good matches for you." I didn't know whether to ask any further questions, so I said, "Okay." One of the donors engrafted within about three weeks, and the luckiest part of my story is that I never had any GVHD issues after that. I know Ilana's story is a little different, and we'll certainly get back to that. There were a couple of variations on the common theme of what is it like to have AML and to try and get into remission? Let me bring Dr. Borate into the conversation and just ask from a clinical standpoint, what does it really mean to be in remission? How do you measure it? How do you document it? How do you know it when you've got it?

Dr. Borate:
Thank you. And again, really glad to be part of this conversation, which is with patients like you guys that have made it through and are on the other side, enjoying the five years that you're about to celebrate and grandkids and all. It just is very satisfying to just see that. That's a great question, because remission can mean so many different things. When you look at the way we define remission, you have the so-called what we call morphological remission.   

Meaning when you get the dreaded bone marrow biopsy after whatever chemotherapy you've had, whether it be the 7+3 you got, or the second or third regimen that you got Ilana, and you look under the microscope, you see no sign of the leukemia. There are none of those dreaded, ugly-looking leukemic blasts there. There's healthy, what we call hematopoiesis. It's going really nicely. All your what we call three cell lines, meaning white blood cells, red blood cells, platelets, are just happily growing in your bone marrow.  

We're all happy. But the thing that is now I think becoming a much more recognized type of remission is what's happening at the individual cellular level? Are the cytogenetics, which is all of you have mentioned and talked about that could be so-called poor prognostic signs if you have some certain chromosomal changes, have those all gone away? When we look for those in about 2,000, 3,000 or 10,000 or 20,000 cells, have they all really normalized? Which means, again, is the leukemia gone at a much more deep or cellular level?       

Then the third remission definition that we look at is what we call molecular remission, meaning for Ilana, with the FLT3 mutation, are there any signs of that FLT3 mutation floating around anywhere in her bone marrow? And we're looking at a much higher number of cells to measure that than when you just look under the microscope at certain different parts of the bone marrow. I think remission is variable depending on how you define it and how you measure it.

I think that's an important thing for patients to ask their doctor, "Well, what do you mean? What do you mean when you say I'm in remission? Is it just you don't see the leukemia cells on a larger scale, or are all of my mutations that you were telling me about, are they all gone?"

Steve Buechler:
Are there different time periods involved before you can assess the different types of remission? Does it take longer to get that last category?

Dr. Borate:
I think it's a learning process. We're still learning. Depending on the type of AML treatment you got, when these different levels of remission are reached. Ideally you should reach all of them with your first treatment, like your 7+3, that would be sort of the best indicator. Some patients get to the more deeper remissions after what is called consolidation. You do a 7+3, your induction, then you do a couple more rounds of chemo. That's the consolidation.         

Then when you do your bone marrow biopsy, after that, the more deeper remissions are reached. As we may talk about later, some patients don't get these intensive therapies both of you got. They may get the newer therapies where there's lesser intensity chemo called hypomethylating agents in combination with this new pill called venetoclax (Venclexta). That's a whole different way that the bone marrow and the disease reacts. When the patients get into remission with that treatment is very different than with induction therapy.

Steve Buechler:
It's not a simple yes, you're in remission or no, you're not. There are degrees. There are levels.

Dr. Borate:
Right. Exactly.

Steve Buechler:
They're still learning maybe how to measure it in different kinds of ways. Very interesting. Ilana, what did your doctors tell you about your remission steps? Did they go into these kinds of different levels and different types of remission? How did they characterize it to you after your transplant?

Ilana Massi:
Well, like you, my transplant had grafted very quickly. My cell came back, all of my counts, came back very quickly. I was only in the hospital for three weeks after my transplant and went home with a reasonable white count/red count, although I continued to need transfusions for a little while. But knowing that my donor was unrelated and mismatched had them, I think on a little bit higher surveillance for a relapse. Ultimately I had zero blasts. Of course, that's the easy one to look at, but the others were that ultimately I had a bone marrow biopsy every month for the first six months.       

Then after at about nine months, they sent a bone marrow biopsy to another center to look for minimal residual disease, which was negative, thank goodness. I haven't had another bone marrow biopsy since then. My physicians felt very comfortable. Then, of course, once I developed GVHD, the only good thing about GVHD is that it's also graft-versus-leukemia, so they were much more confident that I would stay in remission because of the background GVHD. Really that's the kind of surveillance that they did. A lot of biopsies at the beginning, then once I had been clear for nine months, I haven't had another biopsy. Although, of course, they're always watching my blood count.

Steve Buechler:
Have you been advised to do anything in particular to stay in remission? Are you taking any medications or treatments just to maintain remission?

Ilana Massi:
Not really. All of the medications I'm on, which unfortunately, five years out, I'm still on 20 medications. But that's all really related to my graft-versus-host, because I'm on a lot of immunosuppressants. Then, of course, that makes you very susceptible to infection so I'm on bacterial, viral and fungal prophylaxis to try to avoid me getting infected. But yeah. I never had any specific advice or anything about how to "stay in remission." It was just go live your life and enjoy it.

Steve Buechler:
Sure. Back to, Dr. Borate, how typical is Ilana's experience or mine? We've got some similarities, some differences. Is there a typical remission scenario, or is it too much variation, and every case is different?

Dr. Borate:
Yeah. I think the remission scenario really depends on what your leukemia started off with. I think Ilana really elegantly described some of her prognostic information. She mentioned her age, she mentioned her FLT3 mutation. I think those are the type of things that make us determine whether your chances of going into remission, number one, and then staying in remission. Are they good? Are they intermediate? Or are they poor? Based on that information, we employ different strategies to keep patients in remission.             

The fourth strategy is what both of you went through, is the bone marrow transplant, or rather stem cell transplants since you had cord blood. The second strategy, which now we're employing more and more in patients like Ilana, is continuing therapy after the transplant is done directed towards the leukemia. In her example, a lot of patients that have FLT3-positive AML will continue to get FLT3 inhibitors, which are pills that they will take as post-transplant maintenance for a year, for two years, to try to avoid even that tiny, minimal residual disease or molecular remission or loss of molecular remission.            

Whatever we can do to keep that very, very depth of remission going is what we're trying to give patients even post-transplant. In general, the rule of the thumb for AML, and Ilana you mentioned the five years, is most patients that lose their remission or relapse do so in the first couple of years after all their treatment is done. Those are sort of the time that we all are doing a lot of biopsies and checking your blood work. Both the team and the patients are understandably concerned—not out of the woods yet.      

As that two-year mark ends, and you go to your three and your four and your five, your risk of relapse goes down significantly, and your chances of staying in remission go up significantly. At five years, we hope to use the C word, and in this case, a secure word.

Ilana Massi:
I have to say, excuse me, I forgot to mention I was on a FLT3 inhibitor. As you asked the question, Steve, I thought, ooh, that's something I forgot. I was on a FLT3 inhibitor that my physician actually wanted me to go on before the transplant. But it took so long to get insurance approval. It's a very expensive drug. By the time you got approval, it was too close to the transplant. But he started it actually in the first week after, and I was on it for three years. Then it was discontinued and without any issues. Sorry about that omission.

Steve Buechler:
Yeah. Well, we've scratched the surface here. Let's go a little bit deeper, because for a lot of patients, I'm sure that it's a very scary time, especially those first couple of years, as you mentioned, managing expectations and trying to monitor their status. That's probably the time when people are most likely to get anxious and concerning.             

Again, back to Ilana with your experience, were there any symptoms, any conditions, any events that led you to think, “Maybe I'm no longer in remission and maybe I'm falling back into the disease,” how worrisome were those events? What did you do about them, and how did you handle the stress of what they call scanxiety? “I'm going to go back for another scan. How nervous should I be? How early should I start getting nervous?” All that kind of stuff. How did you weather those kinds of challenges?

Ilana Massi:
I had told my physicians very early on that I needed a lot of information. That to me was empowering. They were very straight with me. I think that was helpful, because my family and I were not surprised by the very poor prognosis that they gave me initially. I never really felt anything physically, but certainly there was a huge amount. I mean, the week before I'd go in for my biopsy, it was a lot of sleepless nights and pacing back and forth, and really difficult to handle that every time.

You never get used to that no matter how many of them you have. In my case, thank goodness, it was always good news. I think a lot of my recovery though—a lot of those feelings have been overshadowed by the fact that I've produced severe graft-versus-host disease. I have a lot of fatigue and I'm on a lot of immunosuppressant drugs, so that's led to multiple infections. I think that it's weird to say that the leukemia almost took a back seat, because I was dealing with so many of these serious side effects from the graft-versus-host disease. I mean, other than the normal anxiety, since then it's just a matter of ticking off okay, here's another month in remission. Here's another month in remission. That's been a happy story. On the day of my fifth anniversary, my husband always said, "Somebody's got to be that 20 percent," and here I am.

Steve Buechler:
Yeah. I was pretty good at managing the anxiety. But I do remember one year after transplant, that's a big date. That's when you get your first round of childhood vaccinations. They were also going to report on my bone marrow biopsy. I went in for that appointment. That morning I was getting pretty concerned. They put me in a room, and the first thing that happened is someone came in with some forms for me to fill out. Then someone came in, and they started putting things on the table about the vaccinations.     

But no one would actually tell me whether I passed the biopsy. My thought, if they're preparing to vaccinate me, they're probably not going to vaccinate someone who's relapsed into AML. Even when the doctor came in, she threw some stuff on the table and started chatting. I said, "Hey. What's in those papers? How am I doing?" She said, "Oh. You're fine." It was a matter of fact, for her. But until the patient hears that, there's a lot of reassurance to be had. I thought it was interesting how they handled that.             

I know, Dr. Borate, you've talked a bit about this, but for clinicians, remission must be a matter of both listening to patients but also doing testing and interpreting test results. You've talked a bit about that. Maybe you can expand, and maybe from the standpoint of what kind of testing would cause you to worry? What would bring up concerns? What would lead you to think, “Uh-oh, we may be facing a relapse here.”

Dr. Borate:
Yep. As some of you know, both your trajectory, was a little different because after you have a stem cell transplant, the patient as you both are describing, initially is being watched very carefully with multiple blood tests and signs of graft-versus-host and multiple medication changes. But we have a population of patients who get chemotherapy and because their leukemia is considered "favorable risk," they are not scheduled to undergo a stem cell transplant.        

When they're done with their chemotherapy, they're done. Then they go into what we call observation, where we are looking at their blood work, but we're not looking necessarily at anything different than a regular CBC, which is your blood counts. We're trying to do them every month. We try to see those patients every three months. You're right, we really try to focus on, “How are you feeling? Are you feeling any differently?” Most patients have some fatigue, as I'm sure both of you experienced just with the chemo itself, forget the stem cell transplant. How do you distinguish your normal fatigue from something that's clearly way more than what you anticipate every day?             

Let's say, you get up in the morning, you take a shower, you do some chores, and then you feel like you need a nap as opposed to, "Wow. I can't really get out of bed today. I can't even go to the restroom without feeling short of breath." That's different. We have a lot of conversations around those types of symptoms, what to look for. We rely heavily on the monthly blood work that we recommend patients get. When I don't see that every month, I always worry a little as to what's going on. I have my nurse call my patients and say, "Please do get this."    

I mean, there's a little bit of the test anxiety, as you said. Some patients are like, "Do I really want to go in and get that test? I don't know what I'm going to find." Sometimes you're not always on that monthly schedule. You might get caught up in life. Trying to make sure we have that, because that is really the first sign: if your numbers are off, if they're dropping or in some cases going up like Ilana, your white count was high when you came in, those are signs that something may not be right and that we may have to do another bone marrow biopsy to see what's going on.

Steve Buechler:
It sounds like patients may get anxious at the prospect of going in for a test, and you get a bit anxious if they don't come in for a test, because you need to have that data to track and monitor.

Dr. Borate:
Right exactly. Yeah. I mean, but the COVID pandemic, I think that's one of the big concerns a lot of us physicians have is patients are rightfully saying, "Is it worth the risk to go into a healthcare facility to get my blood checked? Am I more susceptible to getting the infection?" or "Am I more at risk of my leukemia relapsing?" If we haven't seen blood work for two months, I mean, many of our states have been under lockdown for six to eight weeks now, that makes us nervous.            

Is somebody staying at home thinking that this is normal, or maybe they are sick with other—something else, and is something else going on? I think that's the type of scenario where we all get a little nervous. We like seeing our nice normal blood counts.

Steve Buechler:
Yeah. I never wanted to be normal. I wanted to be special, but now I want to be normal when these counts come in. I want to be average. Right in the middle is the best place to be.

Dr. Borate:
That's right.

Steve Buechler:
In the worst case scenario, do you have a number? What percentage of patients who achieve remission subsequently experienced a relapse either back to AML or even maybe a secondary cancer arising from their prior treatment?

Dr. Borate:
The worst case scenario, and I think Ilana mentioned the 20 percent. The 20 percent are the patients that make it for those entire five years without a relapse, without graft-versus-host disease that's so bad that it actually ends up taking their life. Or some other thing happening as a consequence of the disease or the side effects of the treatment. Worst case scenario is a little like what Ilana was talking about herself, 70 percent to 80 percent of patients will not survive beyond five years because of relapse and because the disease ended up taking their lives. That's worst case scenario.           

Best case scenario is the other extreme where chemotherapy just by itself, without following it up with a stem cell transplant, can be curative. In which case your chances of remission/cure at that five-year mark are 70 percent, 75 percent in those cases.

Steve Buechler:
Okay. You've mentioned a couple of times if a relapse is to occur, it's most likely within the first year. Then the second year and with every succeeding year, the probability of that goes down.

Dr. Borate:
Right.

Steve Buechler:
In fact, at some point I think I was told there's a point where I'm at greater risk for some kind of heart disease because of prior chemotherapy than a leukemia relapse.

Dr. Borate:
Right.

Steve Buechler:
But that's eight, 10 years out or something like that?

Dr. Borate:
Exactly. I think the other thing you mentioned is the second cancers, which I can't even imagine. You've already dealt with one, but you're right. The chemotherapy you got for the leukemia, and the radiation that some patients get for their transplant, the immunosuppression that we put people on for graft-versus-host, that can alter the cellular mechanism of the body to make you more susceptible to other cancers. Some of them are not as life-threatening, like skin cancers.           

Patients with graft-versus-host that are immunosuppressed can get a high incidence of skin cancers, which you have to be vigilant. You can freeze them off and cut them off. But sometimes it can be other things that you have to really watch out for.

Steve Buechler:
Given most of the standard treatments for AML, are there some secondary cancers that are more likely than others?

Dr. Borate:
Usually it's some other secondary blood cancer that usually happened. It can be AML or MDS, but it's a different kind. It's not the leukemia you had at diagnosis. Some other things have changed in the DNA that make you more susceptible to another kind. I think when patients live long enough, which is our goal, then they are susceptible to the same cancers that patients in their age group have, whether it be breast or colon or prostate.

Steve Buechler:
Yeah. Okay. What about life after remission? It seems like we've both done reasonably well in the remission part, but I know Ilana you've been battling with a lot. Before we talked, my question to you is how has your life returned to normal since remission? Well, I have good reason to think it hasn't returned to normal. What's the new normal? What's new about it? Are there activities you can't do now that you used to be able to do? How does that whole reality play itself out for you?

Ilana Massi:
Well, it's definitely a new normal. Candidly, I'm not fond of the new normal. But you don't have a choice. You just accept what this disease hands you and try to work through it. For me, the most disabling thing that I experience is fatigue, just extreme fatigue. I'm anemic most of the time, which contributes to it, and now they can't give transfusions as frequently because of the blood shortage, so you have to actually get very anemic before you can have a transfusion.       

But there's also just the element of fatigue, which is a predominant symptom of graft-versus-host disease. Talking about for me, emptying the dishwasher, and washing the dishes is exhausting. I don't really feel like sleeping. I just need to sit down and put my feet up and rest. I used to be a runner. I ran eight miles every weekend, and those days are long gone. I'm lucky if I can walk for two miles. Those are some losses that obviously I'm working through.          

I had to retire, which I was not ready to do, from a job that I really loved. Those are sort of the losses. I guess the way I would think of it is that this remission with graft-versus-host makes your life smaller because slowly it boxes you into the things that—some of the things I can't do at all. Some of the things I can only do on a good day, because it depends on my balance and my level of fatigue and all of that. You get used to it reluctantly because, candidly, what choice do you have?   

You try to cope as best you can. One thing that I say is, "Boy, I learned to ask for help," because I always was the one who did everything. In our family and at work, I was the one who was in charge and figuring things out. That really is a dramatic change. It really sort of affects the type of person you are, too, if you're used to being sort of a take charge person. Everybody always came to me with the questions and the problems, and now I have, with difficulty, learned to ask for help and understand what my limitations are. Hey, I'm alive. I got to see the birth of three grandchildren, so I'm very grateful.

Steve Buechler:
Yeah. Your description of fatigue really resonated with me. I have the good fortune that it didn't come from graft-versus-host disease. But I do remember my first month or six weeks after coming home from the hospital, a level of fatigue I couldn't even imagine. I used to tell people I would take a nap, but it's more that my body just started napping. It wasn't even a volitional thing on my part. It just happened. It happened in the mid-morning after a good night's sleep, in the early afternoon after lunch. Eventually, fortunately for me, that got better, because it wasn't graft-versus-host disease.

             

But it was just astounding how exhausted you could be after a good night's sleep. I just tried to tell myself, that's those stem cells and grafting going about their business and constructing a new immune system. But yeah, if people haven't experienced it, it's really kind of hard to imagine. Our discussion is gravitating more from remission issues to GVHD issues, and you've kind of addressed this, but what advice would you give to someone who's struggling either with staying in remission or graft-versus-host? You've kind of hinted at some of the lessons you've learned. If you're going to convey those to someone about to embark on this journey, what's your best couple of pieces of advice?

Ilana Massi:
Yeah. Just to add onto the fatigue, for the last 20 years of my nursing career, I worked exclusively with multiple sclerosis patients, and they would tell me endless stories about fatigue. Of course, I empathized with them, but now I really understand what they were talking about. I think one of the hints that I would give would be to recognize what your limitations are and restructure your life, to try to keep doing as many things as you can.            

I tell everybody if it doesn't happen by 3:00 PM, ain't going to happen today, because I'm just too tired. I think the other thing is the fatigue also includes a little bit of fogginess. I find that I'm now making lists. I was someone who remembered everything. My kids used to call me Google. Now I make lists for everything and put it in my calendar. If I have to make an important phone call, I put it in the calendar on my phone so that it immediately pops up. Of course, those are some of the same hints that I was giving to MS patients, but now that's come home to roost.             

The other thing is I think it's important to find a new passion if you can't do your old passion, because that really gives you—family is part of it. But I've really become very involved in volunteerism, and in this case for The Leukemia & Lymphoma Society. My friends would call it Team Ilana, and we do a lot of volunteer activities for them. Of course, walking every year, but beyond that stuffing envelopes and that sort of thing. That's an area where I think if you find that there are a lot of things that you can't do anymore is find a new passion. Find something that really gets you up in the morning and that will help you adjust. Instead of dwelling on the things you've lost, find something new that you can do.

Steve Buechler:
Yeah. The notion of volunteering strikes a chord with me as well. I found myself with just more gratitude than I knew what to do with. I couldn't sufficiently thank the people who saved my life, because it would just take all my time to express how great I felt about that. But I can pay it forward. I'm involved in peer counseling and just a variety of activities, including promoting writing, therapeutic writing for patients.             

That's what helped me get through, and there are a number of ventures I'm participating in to try and encourage that process for patients, because it was very helpful for me. I think a lot of other people find it helpful as well. Dr. Borate, same question. Any general advice for people who are seeking to maintain remission and may be struggling with the graft-versus-host issues? What's your best general advice for people trying to weather the storms that come after transplant down the road?

Dr. Borate:
I think the advice that you and Ilana gave is actually way more valuable than anything I would give, because you guys, you're living it, you've experienced it, you've coped with it. I think from a physician perspective, I always tell patients to own and not dismiss their concerns in their own minds and heads, because what I've seen once patients have gotten through these milestones, there's a feeling at least from caregivers and family, that they need to move on.

That, "You survived this. You fought this. You're in remission. You survived the transplant. Yes, you should be grateful." While all of those things are true and you guys have expressed them, there is a part of you that will never be the same. You fought cancer, you've survived cancer. There's always this thing in the back of your mind, what if it comes back? What if all this was for nothing. I always want to tell patients that there's a safe space with me to express those fears and these anxieties.           

Obviously, you don't want them to consume your life. You want to move forward. You want to cope with strategies that both of you have mentioned. But at the same time, if there are days where you do feel anxious or sad or stressed or all of the above, that that's normal and that's okay. As much as your spouse or your kids may want not to see that, that you deserve those feelings and you deserve the space to be able to feel those. I am happy to order an extra CBC if that will help allay some of that anxiety when it's not your time.          

I think that's the best that I can do from my side to say, "This is a new normal, and you will adjust to it. But if there are times that you just need a little bit of that TLC, then just ask for it, take it, take it. Take that time, and next day will be better."

Ilana Massi:
Steve, another thing that I would very much encourage people to do is find somebody to talk to.

Dr. Borate:
Yeah.

Ilana Massi:
I did, at the strong urging of my family, get a therapist. Some of it is a safe space that you can say things that, as Dr. Borate said, your family doesn't even want to talk about; your fears and anxieties, and they would rather just put it on the back seat. I understand that. I found that tremendously effective, and the therapist was a grief counselor actually.

She taught me some very useful things like guided imagery that helped me get through bouts of feeling sad or anxious, et cetera. I wasn't necessarily opposed to it. I just never thought about it, but I was really, really happy. We had weekly sessions for about four months, and that was very, very helpful. I was just sorry, I had waited that long. I just did it last year, but I would really encourage people. I've found it very helpful. For the main thing, it allows you to be a little more independent knowing what to do when you're feeling overwhelmed. A therapist can help you with ways to deal with that.

Steve Buechler:
I think that notion of even your best friends and your strongest supporters almost inevitably want to bring a certain timeframe to it, like "Okay. We stuck with you, you went through it, you did it, now let's go do all the things we used to do, and I want you to be the person you used to be." I think that's a hard thing for caregivers and loved ones to grasp and to realize this is an open-ended thing and maybe never goes back to normal. It just doesn't play out in that kind of neat timeframe.

As we wrap up, I want to really thank Ilana for your story, your courage, the many insights you've shared with us today and extend my very best wishes for maintaining remission and smoothing out those lingering issues and side effects. You've put up with a lot, and I can tell you're a pretty tough resilient lady, so I'm sure that's going to carry you through this.             
Also I want to thank Dr. Borate for helping us see our individual experiences in the much broader context of your clinical expertise. And thank you for the encouragement and insight that you bring into this very challenging condition. This is Steve Buechler signing off. I'm honored to have been able to participate in today's program, but it's one of very many fine programs you can find here at Patient Power. Remember, as Andrew likes to say, "Knowledge can be the best medicine of all."     

Thank you for joining us.

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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