Webinar: Women and Hairy Cell Leukemia
May 21, 2020
Hosted by the Hairy Cell Leukemia Foundation
We held our inaugural webinar for women with hairy cell leukemia on May 21st. Women from several different countries and numerous U.S. states joined in to listen, share their stories, and offer feedback on how the Hairy Cell Leukemia Foundation can further support them and strengthen connections among women.
Transcript
(We shared the names of Adi, Leshia and Sarah with permission. Other participants’ names were omitted.)
Adi
Hi everyone, my name is Adi. I'm on the board of the Hairy Cell Leukemia Foundation and I'm excited and honored to be on this call today. When I was first diagnosed with hairy cell leukemia about seven years ago, my doctor sat me down and said the scary word "leukemia." I couldn't process anything that he was saying to me; I was so lightheaded and disoriented. They had to give me ice chips and orange juice just to revive me. Then my doctor said to me, "but the good news is you won the lottery. I know how to treat this.” I didn't understand what he meant by the lottery; I would prefer to win a different type of lottery. But now, seven years and two treatments later, I understand a little bit more about the disease and how we can live with it.
Hairy cell leukemia is a very rare disease. We all know that. But it is extremely rare for women to have hairy cell leukemia. I never thought that I would meet another woman with hairy cell leukemia. After my second treatment two and a half or three years ago, I went to my first Hairy Cell Leukemia Foundation conference in Ohio. As I was leaving the conference, I met Sarah who is on the call today. I was like, “Wow there is another woman with hairy cell leukemia.” We've kept in touch and it's just been such a wonderful outlet for me to speak with Sarah, to speak with Anna, meet with the folks over at the Hairy Cell Leukemia Foundation. So, I really hope that we take this next hour to celebrate us, to celebrate how strong we are. Please note that you do have a voice within the Hairy Cell Leukemia Foundation. I am on the board, I scream and shout, and I'll always, always make sure that we will be heard and that more research will be done about women living with hairy cell leukemia.
Adi
Can you tell us a little bit about how you've built your support system after being diagnosed with hairy cell leukemia and undergoing treatment?
Sarah
You did a great job describing that feeling of hearing the word “leukemia” and then also learning the type of leukemia. I think it was described to me as if you're going to get one, it's this one. I'm not sure how I felt about that.
I read literature, especially the literature from the Hairy Cell Leukemia Foundation. I'm not on the board, but I appreciated the content, the rich content that was available to me in the moment. I initially built my support by reading the journal articles and the patient stories.
I'm kind of a private person when it comes to my personal health. I don't want to feel like I burden people when I share what's happening to me because everybody has stuff going on in their lives. I don't want people to think that my stuff is more important that your stuff. But I live in a small town and things circled back. I learned through that experience of what sharing can bring. I ended up meeting the father of a friend. He was an oncologist at a hospital, and I ended up being able to connect and talk with him. He had hairy cell leukemia.
What I learned from that experience is sharing and opening up was an opportunity to connect with people and not feel so alone. It’s okay to tell people and talk about it and that brought people to me. But all the other patients were older men. So, I decided to attend a Hairy Cell Leukemia Foundation patient seminar and that’s where I met Adi. I was so happy to meet her and have someone to connect with because I wanted to find somebody like me. That's really that next level of support that I wanted; someone I could talk to.
I appreciated that opportunity and have stayed in touch with the Hairy Cell Leukemia Foundation. That's what's hopefully bringing folks to the table here is being able to find somebody that they can talk to and connect with in the future. I'd love to talk with anybody who is looking for somebody else just to connect with around this experience, this journey.
Participant
When I was diagnosed, my first response was number one, denial and number two, let me help somebody else. The Leukemia & Lymphoma Society have the Patti Kaufman First Connection program and I started volunteering there. Somebody there said, "let me sign you up for a first connection." They do it by age and gender. And so I talked to a woman who was just my age who had gone through it just before me so. That was very helpful.
I had served as a First Connection volunteer for them and probably talked to 10 women. I was diagnosed in 2011 and treated in 2012. I've gotten a lot of information from the Hairy Cell Leukemia Foundation so maybe they could do a similar sort of thing.
Participant
I went to a regular cancer support group and I found that it wasn't a real good fit because many of those women were having mastectomies and were much more ill than I was. I did not feel comfortable sitting there being in remission when they were very, very ill. So, I was having difficulty finding a support system.
Leshia
I had a friend who was going through breast cancer at the exact same time that I had hairy cell leukemia. We graduated high school together and we both had young children. I felt guilty because she was going through the surgery and all of the chemo. There were so many things going on with her, so I felt like she was sicker than me. However, after talking to her she said, "you know what, I have breast cancer. They can remove that and I can get chemo and I'll be okay. You, you have blood cancer. That is all over your body," and she's like, "that to me is scarier than what I have." So, I never thought about it like that.
Everybody has their own story and their own way of looking at things. So, it’s just kind of coming from where you're at and your perspective.
Participant
When I was first diagnosed, which was in 2016 after 12 years of low white blood cells counts, I joined something called Network 54 which was an online chatroom and there was a ton of discussion from people with HCL - men and women, young and old. So, I got a lot of good information from them as far as what to expect, how to decipher the blood work reports, who they went to, who they saw, who they recommended and that was really helpful.
They have since transferred to something called Tapatalk.com because Network 54 was going away. I don't think there's as many people on there. There are some really good people to help you that have gone through a lot worse than what many of us have and it really helped me as far as a support group. I told very close friends and family but, a lot of people still don't know and I prefer to keep it private.
Participant
I was diagnosed in 2001 and I didn't want to tell people at work. My support group was my husband and my family. My sister is a nurse and she's very supportive. I wanted to apply for a promotion at work and I knew if I didn't apply then, it would never come again. I applied and did get promoted. I was diagnosed in 2001 and not treated until the end of 2004. So, I kind of slogged through, but I made it.
The annoying thing was when I was complaining, “I'm tired, I catch colds all the time, I just don't have the energy I used to have”, people would say to me, "Oh there, there dear, it's just menopause." So, when I was finally diagnosed with hairy cell leukemia, I felt so vindicated. One of my best friends was crying when I told her and I said, "No, no it's not that way. I feel I'm vindicated. I was right and the doctors were wrong and now I've got the right diagnosis and I'm going to get better." I just knew I was going to get through.
Participant
I was diagnosed in 2012, but not treated until a year later, roughly. My support came from my team at Ohio State University. In terms of support, I had complete confidence in them.
I also had taught for 35 years, 20 of them at this one particular school. We had a good network and tight community. So, I think the hardest thing is not knowing when you’re going to need treatment. The woman who said she was diagnosed in 2001 but wasn't treated until 2004; living with that uncertainty is really hard, especially when you are feeling tired. For the longest time before I was diagnosed, I thought, “Oh you're just getting old.” Then to realize okay there's something behind how particularly tired I am.
I did share my diagnosis privately with my colleagues when I was going to have to leave in the middle of the school year, which was extremely difficult. I taught 3rd grade at that point so, you're just getting your rhythm going and that relationship with your students. One of my colleagues said, "well don't let it define you." That's hard to do when you're going through the treatment and when you're living with uncertainty, but I have to admit I've held on to that and its now been seven years since treatment. I think we all realized how much we appreciate things differently when we've been through something like this but also had that little cloud over our heads. But it is important to try to not have it define you.
My group was my husband but also my friends who were always there to give me ideas on what I could do when I was having treatment and needed to alone.
Adi
Thank you for sharing. As I mentioned in the beginning of our call, I've had two treatments. I did relapse once and I remember when I was relapsing or my numbers were going down, my doctor would have me come every month and then every three weeks and then every two weeks and then every week to check my blood. And he wasn't treating me just yet, he was waiting for it to get to a certain level. It’s scary and just as many of you have mentioned, I was also very private. I didn't want to share this information with many people. So, in some respects, I felt very alone and that's one of the reasons why I love everyone at the Hairy Cell Leukemia Foundation. It’s just such a wonderful support.
I met Leshia about a year and a half ago at the HCLF conference in New York City. Leshia spoke about her experience with hairy cell leukemia, she'll obviously do a much better job than I'm going to, but I think she’s been in remission for 20 years and was diagnosed when she was pregnant. Very, very, very scary. So I'd love for Leshia to share her story and also if you could let us know at the time of diagnosis or during treatment, what do you wish you had known that would have helped you navigate the process a little bit better?
Leshia
I was 34-years-old, I had two toddlers and I was pregnant. This is when I found out I had hairy cell leukemia. So, of course, my biggest concern was, is my baby going to be okay? That's where I put a lot of my thoughts and prayers. I'm also a registered nurse and at the time I was doing infusion nursing in the home. I'd go to different homes and do all kinds of IV infusions. So I did talk my oncologist into letting me have my chemo at home. So, it was really nice to have that, and I felt that that right there helped to speed up my recovery.
That was 21 years ago so, I've aged, I've become a little wiser and to be able to look back in hindsight is definitely something that is valuable.
I think for those of you who are listening or are caring for someone with this or you're going through this yourself, please, please, please, put yourself first. Now I know that women, we give, and we give, and we give. You're a mom, you're a spouse, you work; we give so much and what do we do for ourselves? And I know every single one of you knows exactly what I'm talking about. We are low on that totem pole.
Now, when you're going through something like this, any type of chronic illness, putting yourself first is so important and it's not being selfish. Don't ever think of yourself as being selfish for putting yourself first. Because we all know you cannot pour from an empty cup. So, first and foremost, please think of that. It’s not taking away from anybody else.
Another thing is I did do some journaling during this process and I wished I would have done it a little bit more. We're going through chemo; we're going through treatment. We are in the process of that waiting game, like someone had mentioned a little bit ago. We’re waiting for those labs to drop enough to start treatment. You feel like there's that dark cloud over you or am I going to relapse again? It's always with us.
Don't forget to start planning your life after cancer. Your life after chemo. Again, this is not going to define who you are, but it sure can help shape the type of person that you are. You see things a little bit different. You feel things a little bit different. You learn so much about yourself. So, start setting goals. Find things to look forward to. “When I'm done with this chemo, when my labs are stabilized, I'm going to do this and this and this.” Start setting some goals for yourself because we are so much more than just that diagnosis. That's just a smidgen of our lives. Start planning. I wish I would have done that a little bit more instead of just focusing on, "oh my gosh, oh my gosh, this is happening" because it sure can consume you and you start to worry. Sometimes we're our worst enemy. So really start thinking about some of those positive things after the fact.
We women like to say, "we're fine, we're fine". But you know what? It's okay to be human, it's okay to have what I call a "pity party" once in a while. Give yourself some grace. I don't think I gave myself enough grace, to be honest. Cry if you need to, vent if you need to. Get it out and then move forward. Can't stay at that pity party for long, but you have a right to be there every so often. Like I said, it can be overwhelming. Not everybody's experience is the same and as we give support in groups like this, know that we all have different stories. Everybody's stories are different, everybody's diagnosis is different Everybody, the way we all recover is different. So, try not to get wrapped up in that. Try to focus more on those positive stories because I'll tell you what, there are more of us survivors out now than those who have succumbed to this disease.
Have your reliable support systems available and don't be afraid to accept offers because you know that people are going to say, "What can I do for you? Let me know if you need me." Okay that's pretty vague. You should say, "you know what? I think something that you can do for me, can you run to the store and get this? Would you mind going to the doctors with me? Would you pick up something?” We don't have to do everything ourselves. We don't have to do this battle alone. So, when people say, "what can I do for you?", give them a task and watch them go.
Participant
First thing I wanted to say is, I appreciate tremendously having this webinar. I was diagnosed a little over a year ago and I haven't had any treatments yet. My doctor's doing the watch and wait. Which in itself causes a tremendous amount of anxiety as other women here have said. I'm dealing with it fine. I go about my life; I haven't put anything on hold. I have grandchildren, love visiting them and I'm doing everything I could possibly do. I'm living alone which makes it a little bit more difficult at times to talk about this with anyone. There are no local support groups. So, having found support through this organization has been a tremendous help for me. I would be more than willing to work with someone to organize local support groups.
I'm also having an issue with my hip and it looks like I'm going to need a hip replacement, and I've asked my doctor about it. So, my question to the group is if anyone has had any kind of operations while they are going through HCL. So, I'm just a little bit nervous about it.
Participant
I had knee surgery last summer. I wasn't going through treatment, but my blood counts were vacillating. Other than trying to work out pain medication issues, the surgery itself went well and my recovery has been really strong. I wish you well and hope it's a good experience.
Adi
One thing I do want to bring up is when I did meet Leshia about a year and a half ago at the conference, she was just so dynamic. And I said to Leshia, "What's you're secret, how are you making this work?" And when I was speaking with Leshia, Leshia just said, "I try to have a good perspective in life, I try to smile, I try to laugh, and I try to keep things light-hearted." I know there have been no clinical trials on that, obviously, and everyone is very different.
What coping methods have you found most helpful? Is it exercise, cooking, meditation, vitamins, laughing? What do you do that makes things more helpful?
Participant
I recently had my treatment. I was diagnosed with some sort of lymphoma back in 2000, towards the end of 2016 and I went to so many different doctors and they couldn't figure out what I had. So finally, I was recommended to one of the head hematologists back where I used to live. I went to see him, and he just started pulling out blood, like 21 tubes of blood and he said, "I'm going to send this to the main pathologist in Tallahassee" and sure enough he says, "I think it’s hairy cell leukemia". I said, "what if you're wrong?" He goes, "I think it’s hairy cell. But we will get it confirmed."
Sure enough, two weeks later, we get the results and he says, “I'm ready to start treatment next week.” At that point, because I had been almost three years of not knowing and not knowing when, if I was going to need treatment I said, “Let’s go, I'm ready.” I went through treatment and then maybe two weeks later, I was hospitalized. My whole body went into a rash. So, at that point I was getting scared. But after that, I got better and had my support system, family, friends. I met (name of another webinar participant), I think she's in here with our group. But I met her through another friend who also had another type of leukemia, she recommended I speak with her. Amazing, her support, constantly checking and telling me step by step how I would feel, what I could do, what the results may be based off what she was experiencing, etc. And of course, everyone's different. But it helped me out a lot to have her support, I'm grateful for that.
What helps me now after my treatment – At times, I do feel tired, but being around people that I love, especially family, throughout my downtime at work and throughout the holidays. I love to cook. So, I would cook just to have them come over and entertain and play games and just laugh; just laughing a lot.
Other than that, just try to get as much exercise. I don't do as much as I would like to, but exercise, rest, and eating healthy. That's what I focus on. A lot of the times, I don't even think that I'm sick, that I have this illness because I don't really feel it. But then all of a sudden, I'm like, “Oh okay well, I have to eat healthy, have to stay away from this, stay away from that.” But for the most part, that's what helps me. Just being around happy people and laughing hard.
Adi
Thank you for sharing. Would anyone else like to share some of their coping mechanisms?
Participant
Hi, everyone. I was diagnosed at the end of 2017. I had been unwell for a number of months. I live in the UK and I went to my general practitioner two or three times. The first time, he said, "I think you're too stressed, we need to find some coping mechanisms. I'll get some blood work done but I think it's stress." The blood work came back more or less okay. It wasn't perfect. Then I went back again and I insisted that I was still unwell, it was about six months later. I was stressed, I was very tired, I couldn't sleep at night and this time it was a lady doctor and she said, "Well it's probably menopause then."
I said, “Okay, stress, menopause fine, but can I be tested because I have a feeling that I'm missing out on some vitamins, some minerals. I feel I have this sort of deficiency.” She, very reluctantly, because obviously these are costly for the NHS, but she tested me for five or six things. And those 5, 6 things that she tested me for, which was zinc, magnesium, iron, and I can't remember something else. I came as severely deficient, severely deficient. So I said, "Right, what can we do?" And so she said, "Well go to the pharmacy, get some multivitamins and that will tide you over." But it didn't and in the end, I insisted, and I insisted and finally I was referred to a very good hematologist at the hospital and she said straight away that I needed a bone marrow, which is not very nice. And that confirmed the hairy cell leukemia. So, I was so unwell because obviously it had been going on for quite a while, I would say a year and a half maybe two years or so. So, when I got a second opinion, I got a third opinion from another hematologist-oncologist and they all said the same thing, “The treatment is this, you're lucky that it’s this type of leukemia and not another type of acute leukemia.” So, I had treatment, had a terrible rash, and was very unwell for a few months in terms of fatigue, in terms of lack of appetite.
When I started feeling better, and my quarantine ended because my counts had come up again, the first thing I did was I went to a nutritionist. I went to her and I said, “This is the situation. Can we look into it?”
Well first of all, she had me do all the tests possible, hair test, blood test and everything. And apart from finding that I had several other deficiencies, and they were all severe deficiencies, so I don't know, we did presume that I am very intolerant to gluten and my digestion was probably altered by that. She had me do a hair test as well, so we discovered that I had a very high level of lead. So, I discovered that I had lead in my pipes in the house, and I had to have the work done of course. So, I got the plumber in and we replaced all the pipes.
So now what I've done, I don't dye my hair anymore, which I used to do that all the time. My hair used to need to be perfect; I wouldn't go out without being nicely done. It’s organic meals as far as I can manage. Obviously, I exercise. I have ditched a little bit of makeup; I only buy a few things that are sort of cleaner, and tried to sort of clean up my life. Internally, cleaning it up and also in terms of exercise and getting rid of the anger maybe that we carry sometimes with us for things in the past that we are not able to set aside. So, I think it is important that we look at all these aspects. What we eat, there are so many things and it becomes complicated, sometimes I feel that it’s homework every day. I juice, I do rebounding, I try to do exercise. But looking at the literature and reading a bit around, which I have done quite a bit actually, all these things seem to help to keep ourselves in remission. Because there are people out there like other lady who just spoke earlier, there are people out there with more than 20 years in remission.
So, I think that is important. I don't know what else everybody else has found if you have found that you actually were deficient. Vitamin D, for example, seems to be so important for use. My oncologist, she's a lady, she's very good, up with the integrity part of managing a cancer patient. Every time I go, she tests me for my iodine, my iron, my vitamin D as well. So, she's sort of very much into it. So I'm wonder, sorry for being so long, and I'm wondering if everybody else has a similar situation or having sort of gone to a nutritionist or another path to find out a little bit more of the cause of this.
Adi
Thank you for that and as you were speaking, I was reading through the chat and someone had asked, “How did I get hairy cell leukemia?” I don't know, I think that's what everyone's trying to figure out - how we got hairy cell leukemia but also the question is, “How do we treat hairy cell leukemia and how do we try and stay in remission for as long as we can?” Because as I understand it, it is definitely treatable, there is no cure, but there is a way that we can be in remission for a very long time and be old ladies.
So, I definitely don't have an answer to that, but I think that coping mechanisms, whether it’s exercise or nutrition, it’s so important. I know for myself when I went to the doctor, I asked my doctor even after treatment, “I'm feeling a little fuzzy, something's not right with me. Can you check my B12?” So, he did some blood work and as it turned out, I was very low in iron and so right now, today, I take vitamin C and I take iron and that's all good.
But yeah, it's a question that nobody really knows how to answer, but what my hope is that we all keep in touch.
The good news is that we do have information, we have a lot of information on the Hairy Cell Leukemia Foundation site. So do your research, reach out to Anna (at HCLF), she will always put you in touch with the right people and with the centers of excellence. So even though it is a rare disease and it's so rare for women to have this, we do have a great support.
Transcript has been edited for clarity.