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Mesothelioma Help – Live Q&A 2015

Mesothelioma is an aggressive asbestos-caused cancer that strikes over 3,000 Americans each year.

Asbestos is a known human carcinogen with no safe level of exposure.

The time between exposure to asbestos and the onset of disease is from 15 to 60 years.

The expected survival of people diagnosed with mesothelioma varies from six to 24 months.

There is no cure for mesothelioma.


Welcome to the third annual Q and A Mesothelioma Aspener Series with nurses Ellie Ericson and Lisa Hibarrett. Lisa has been a thoracic surgery nurse for nearly 25 years and has the skill and knowledge to care for and support mesothelioma patients. She is currently at a major teaching hospital and mesothelioma center. Through her work, she has helped ease the stress of patients and their families by offering a comforting hand. She is passionate about helping the mesothelioma community.

Ellie is a graduate of the Mount Auburn Hospital School of Nursing and Worcester State College and has worked in the surgical intensive care unit at a major teaching hospital and mesothelioma center for more than 30 years.

We welcome both experienced nurses and thank you for your time. We also have Sharlene H on the call and she is an experienced mesothelioma social worker. She has worked with mesothelioma patients and families for over ten years.

Sharlene we're gonna direct the first question to you.


What does a social worker do for a family going through mesothelioma?

Okay so social workers do lots of stuff, lots of different stuff for patients and families dealing with the diagnosis of mesothelioma. The first and I think the most important piece that social workers can offer is to take care of the emotional side of a diagnosis like that. It's one of those diagnosis that people get all of the sudden, so it can be very scary and we need to really pay attention to what's happening emotionally so that we can take care of that piece and people can then get through their treatment. So that's a major piece that we do.

Is there more you'd like me to say about that or specific questions?

Sharlene tell us a little bit about, you formed such specialty [inaudible 00:02:10] Lisa and I have seen over all these years and how do you think you're able to do that, where a lot of other people aren't able to do it?

Well, yeah I think that is really really important. You know, it's a long process and so when I work with folks in a hospital setting, I really try to connect with them on a daily basis to check in, to see how things are going. We not only pay attention to the patients because they, clearly, are very important but the family members are also very important. Caretakers can really be under a tremendous amount of stress because life doesn't stop for a caretaker just because their loved one has a diagnosis. They still have to continue to run their family and work and whatever they might do, or have to do. So, we really want to pay attention to the caretakers and address the stress levels.

I do that by meeting with them on a daily basis, both the patients and the family members, checking in emotionally, kinda taking their temperature, if you will, in terms of where they are, and providing emotional support all the way through. We do this by, I run support groups for them which is really important, I run a support group for just caretakers, because their issues are different than the patients'. So those are some of the ways in which we do that.

We also do pay attention to some of the concrete needs that people need 'cause that's important, too. Some people have to travel a great distance to get treatment, so that can be taxing. Not only on the emotionally but also financially, so we address some of those issues and try to lessen that burden by helping them find housing or flight information, anything that will help reduce their stress so that they can pay attention to what is most important.

And it is very stressful, right?

Yes, extremely so, yes.

Sharlene, would you say one of the biggest stresses is traveling, like if you have to come stay?

Yes, I think that's huge. Yup. It's expensive but it's also sort of the whole uprooting piece and when you do come for treatment, you do have to come for a length of time. You're told that upfront, but no one can give you sort of an end date of when the treatment is over and that could be extremely stressful. You know, it's not a time limited stress, it's sort of a chronic stress and you have to sort of figure out how to deal with that chronic stress and how to take care of yourself. Being far from home, you don't have your natural support, you don't have your own family next to you. The social worker becomes one of the support people.

Mm-hmm (affirmative).

Not that we take the place of family but we are there by your side, in those times that can be trying and difficult.


Yeah and you see every patient, right? 'Cause I think that-

Yeah. Every patient, just about every day.

Okay. Is it common to treatment centers and hospitals to have a social worker? Or it depends?

I think most major teaching hospitals have social workers employed there because it is such an emotional, there is an aspect of emotionality that is so important. I would say most likely yes, I don't know for sure, but I would say probably yes.


Yeah and like you said, it's really kind of a journey. They start, patients start with a strange diagnosis and then there's so many ups and downs and you know. What we've seen too is that a lot of the patients get very close to each other and they [inaudible 00:05:51] Then, their half may say, you know, one may do very well and one may not. Can you talk a little bit about that-

Yeah. I think that's a really important point. Patients come out here and they do form bonds with each other, very close. The family members especially. To put it bluntly, some of the patients don't make it and it's really difficult for the bonds that they have made and those folks that are here with them because they do become like family. All of them are kind of away from home, wherever they are, whatever center they are, they form bonds and become really close to each other, support each other through all the tough times. So, it can be hard when they lose a loved one, but also a friend that they've made. That can be really tough.

Then it's the guilt that goes along with that. You know, "My loved one made it but your loved one didn't, and how do I cope with that?" It can be really tough.

Yeah, I think we see that more and more about when patients do die and how you have this tight emotional bond with this group of people that you probably didn't know six months or a year before. Then, all of a sudden your loved one has died, we kind of leave the caregivers out there, you know? Nobody else knows what they've been through, their family members, except for that support group that they had.

Right and I think that holds true for, sort of, extended family members. If a wife comes out here with her spouse and they have children and the children aren't able to come out because financially it's not feasible, we see that a lot, that the children might come out at the very end and the wife has gone through this entire journey and the children are sort of coming in at the end piece and haven't processed this whole thing through. Really, the spouse ends up becoming more bonded with the other spouses that have been here with her throughout the journey. That can be a very difficult piece to deal with.


I bet, yeah.

Sharlene can you talk a little bit, too about complicated grief? As far as mesothelioma goes.

Yeah, I think a huge piece of it is around guilt. Where some people get it and some people don't and why didn't you get it and why didn't I. And how come, you know, if it's a husband and a wife, or whatever, and it was exposed, we see that a lot. Then, the grief is not just about grieving about the loved one dying, it becomes complicated by this whole guilty factor. That can be really really difficult. It's hard to, that's why we run support groups that are separate where patients might have their turn to talk and spouses have sort of their own group because their issues are different.

They have to be able to say that, "I feel guilty", "I feel bad". I can't tell you how many spouses I've heard say, "I wish it was me, I wish it was me. We were both exposed but I wish it was me and I wish it wasn't him and I feel so guilty and I feel so badly." So it's really hard to grieve the death when you are also trying to grapple with your own guilt around that.

Mm-hmm (affirmative).

So what do you do, Sharlene, if you're a widow of somebody who passes away and, you know, is it-

Right. I think you have to really pay attention to what's happening. You know, we talk with spouses all the time, oops sorry. Kind of once you're done with me, or whatever, whomever the social worker is in the center and you go back home, really really encourage people to either get their own counselor or therapist, try to join a group. Some people are really great joining groups, they feel comfortable. Others just don't feel like they can share their grief with others and are just not ready to do that and that's okay. But, I think they really need to get a professional person to talk with because everybody experiences this in their own way. Some cope really well, some do not. Then, they also have, aside from all that piece, they then have the concrete needs that they need to go home to.

Now, if their spouse died, maybe they can't afford to stay in their home and need to sell their home, they need to figure out what to do. There's just so, the levels of stress are, it's multi-layered. So, they really need the support of a professional to sort of help them figure out how to navigate that and "Where do I start?"

And on top of all that you still have all these medical decisions that people, you know, have to decide. Where to go, if they should go anywhere, or if they should get involved in the clinical trial or if they shouldn't.


You also have that and also, I think a lot of people kinda go over and over that in their head when things don't go well. They second guess everything that they've decided, you know?

Right. Right and you know, we try to talk with people, "You've made the decision to be here, so we just gotta go forward and try not to revisit those decisions." You know? We tell people, "You've made that decision so let's go forward and put our best foot forward and try to keep looking to the future to see where we go." But people do second guess themselves a lot, especially when it doesn't go well and that's another piece that comes into guilt. You know, "My husband did this for me and now he didn't do well. I wish I had never talked him into doing this, I wish I had never done this."

If social workers can get to folks even before they decide what they're going to do around the process, those are some of the issues that I would bring forward. You know, how did you make this decision together, how did you come to it as a couple? Because if you can do some of that piece, you don't get some of those complications at the end.

Mm-hmm (affirmative), yeah.

Now, we've seen Sharlene in action and you just have no idea how many people depend on her and you know, all the support groups. They really enjoy those support groups because it gives them all time to talk and to, you know, let out their issues.

[inaudible 00:12:14]

Yeah, it's amazing.

I think the other piece that becomes difficult to is when there are young children involved and we've had, you know, many cases where there's been younger kids involved. I think family really grapples with how do we help the kids get through this as well. So you have the spouses trying to get through this and navigate this, and then you have some young kids and they have to either, "Do we bring them out with us or do we leave them home and continue with school and the normal routine? How do we work with them?" You know, that can be very very difficult and if there are young children involved, there are special and different ways to talk with kids, depending on the developmental age and what is appropriate to say and what isn't appropriate to say and when do you bring them out to see whomever it is and when don't you, or grandchildren? Whatever it may be. So that can be another piece that the spouse or the caregiver, whomever it may be, again, more decisions that have to be made for the caregiver. It's just a tremendous amount that they have to do.

Yeah. Lisa and I were talking today and we were thinking, you know, it really is all different ages from the youngest that we can remember was what? Eighteen?


So it's just not [inaudible 00:13:37] middle aged couples that are going through it. It's families, it's amazing.

Yup and you know, Justine, as you guys know, we're seeing more women diagnosed with it as well and that changes the whole dynamic for the husband. Where now, normally the wife is usually the caretaker in the family and now those roles come reversed. It's very difficult. You know, I've seen a lot of men really struggle with either that caretaker role or figuring out what to do, how do I help my wife? She was always the nurturer, how do I get through this and how do I support her? They're kinda lost in that process. That's another piece that I would kinda sit with them and help them think about that and "How do we do this?" Acknowledging, yes, it's a role that maybe you've never played before, it's probably really tough but we can get you through it.


Staying on the topic of age, I had a question. How long can people develop mesothelioma?

The youngest we've seen is 18, right?


Yeah. Did you seem to understand him?

Yeah the youngest I think I ever saw I think was 18.

Yeah. I think I heard of at least peritoneal meso a little younger but I never saw it. 18 was the youngest that I think we've seen.


You know, that's very young to try to figure out.

It's a terrible disease.

Yeah and you know, the usual incubation period for meso is what? 20 to 50 years? You know, it kind of slides in the face of all that [inaudible 00:15:33] own thing. I think Sharlene and, you know, a social worker's just a vital part of the whole team. I think that's what people need to hear, that they have to be comfortable with their team, you know? They have to want, they have to really be comfortable that they are being well taken care of-

And I think people should seek out the social worker, whatever team they go to. I mean we are most places, so I think it's really important that if someone doesn't seek you out, that you seek them out because if you don't pay attention to the emotional piece, it's really hard to heal. It really goes hand in hand with the physical healing and the emotional healing.


Sharlene, just a quick question. So Ellie and I, obviously see patients after they leave the hospital and often times they might be at a hospitality home or wherever and it seems like there should be a social worker involved at that point. You know, they're kind of moving forward to getting home.


Is there a bridge, you know, from hospital to home? Will some help?

Yeah, that's always a tough piece. One of the things I usually tell people, is to when they do get home, because we take quite good care of them when they are with us, wherever they may be. If there's a social worker they're going to be taken good care of and people feel very held and taken care of. Then when they go home I've heard people say, "Oh we feel abandoned because we had all this support and we go home, we don't have much."

So I really encourage people to connect with their local cancer centers, wherever they may live, and connect with the folks there. Nine times out of ten there's a social worker, there's some kind of a group. It might not be specifically for mesothelioma, but it could be for something else that might be appropriate for them. I really try to tell people to reach out and do that and not be so isolated with this. Because as you know it's a really rare disease and sometimes they can't find anybody else diagnosed with it.

When they come to a center it doesn't feel so rare, but when they go home it does feel like that again. So it's trying to help them not feel isolated and to reconnect with a cancer center in their local community.

And there are resources out there, like Selling, but you know, from a social worker point of view for the whole [inaudible 00:18:12] and you know, different types all across the country.


These centers.

Yeah, yeah.

I know you do a lot of that, too. Helping connect families with different resources.

Yup, yup, because it's so isolating and, you know, when they get home and desperately need to pick up their life as best they can. It's not always the same, it might be different and what is called "the new normal". Not exactly what it was like before but that's okay and there's a whole adjustment period, and within that adjustment period they need support around that. So they really do need to connect with their local cancer centers, or whomever, to get that support. Oftentimes they sort of tapped out their family and so I always tell them to really try to turn to a professional, because that's, you know, that's where it'll be helpful for them to go.


Sharlene you-

And do you find that-

Oh, sorry.

I'm sorry.

Go ahead, go ahead.

Do you find the meso patients, just because of the rarity of it, do you find a huge difference between their experience and someone who, say, might have lung cancer?

Oh, yeah. Very much so. I think because it's so rare, oftentimes the patients that are diagnosed with it, have never heard it before until they've had a diagnosis. It's so frightening, they have no idea what it's about, and they don't know other people who have gone through it. Where other maybe lung cancer survivors may know someone else who's gone through it, and they've gotten through it and they've been okay and they've gone on to live a decent life with mesothelioma. You know if you don't know anything about it, you don't know anyone who's had it, it's really hard to sort of be hopeful and think of what the future might hold. So, it's really scary.


Then, I think when they do find out, when they start to do research, then it becomes in oftentimes even more scary because, you know, they read these dire statistics. We always tell people, try not to do that, for when you go to the center, wherever it is you may go and you talk with the doctors and you find that it's more hopeful to try to stay focused on what your team is saying versus, maybe, what the internet is saying because it gets very very confusing for people.



I guess and showing how important your relationships are with these people.

Pardon me?

Kind of shows how important the social worker's relationship is with the patients, you know?

Yeah. I think it is. We really try to guide them through the whole process and sort of help them interpret a lot of what the doctor's saying because that sometimes can be overwhelming. Trying to fit in on meetings with doctors and patients and families that sort of help interpret that so when the doc leaves the room, you can sort of say, "Did you get that? Did you understand that? What other questions can we help you with?"

When things aren't going well, trying to help them be more assertive and aggressive in addressing the team and really trying to get their questions answered and just kind of being parallel with them in that process and trying to help them navigate that whole piece.

I did have one other question, when we were talking about the guilt that the surviving spouse has from someone who has passed from mesothelioma or has been diagnosed. It's the spouse that survives, is that spouse still at risk and does he or she need to be tested regularly for mesothelioma?

Oh, that's a great question. I don't know. That's a Lisa or Ellie question.

I think if they were exposed to asbestos it could, you know, if they're developing symptoms but you can't just catch it because you were with somebody who has mesothelioma. You have to be exposed to it, you have to have almost, like, predisposed. Some people who are exposed to asbestos, don't get mesothelioma. Most people that are exposed to asbestos don't get meso. So it's [crosstalk 00:22:44] Right, Ellie?

There really isn't a screening test. People are always asking that. [inaudible 00:22:54] because it's so complicated, all the different [inaudible 00:23:04] You know, it's a complicated disease, it's a complicated diagnosis, and a complicated treatment. Progress is being made on all of those fronts but it's still complicated. There's really no screening tool. I mean they have been working on different things but, you know, nothing.

I guess one of the big things, I heard one of the mesothelioma physicians say about ten years ago and I always remember this. He was talking about progress that was being made. He said, "You have to remember, within the last sixteen years it's just getting to the point, it's like, probably sixteen years ago, if you had mesothelioma that was the only criteria to enter into most of these clinical trials. Now you have to have a certain, a lot of them are much much more specific. You have to have a certain subtype of mesothelioma, you have to have gone through treatment or not gone through treatment. Whatever the clinical trial is for.

It's kind of evolving but it's really, you're not at the point where you could, there's a simple screening check for it. You know.

My next question is, does asbestos travel on clothing and is there a possibility of secondhand exposure?

Yes it does travel on clothing and that's how a lot of people, or younger people, get asbestos is that maybe their parents brought it home on their work clothes and maybe the child, you know, hugged the father and he had on [inaudible 00:24:59] clothes and he repetitively did this. So, yes, it does travel and there is secondary exposure.

Yeah, we've had quite a few patients that have been exposed by doing, the wife might have been exposed by doing the husband's laundry, or different things like that. You know, we're also looking at developing a little bit further because there are some, you know, most people can be exposed and not develop mesothelioma. So what makes the subset of patients that do develop mesothelioma, what makes them susceptible to meso if they have the same exposure as other people? That's why they're looking at the different genes and different variables to see what is the commonality of it all.

You know, the asbestos is still in the United, it's still in, it's all over the place, it's still in the United States. We still use it for different things, break lighting, and things like that. It's not illegal in the United States.

Mobile homes.

Yeah, a lot of homes. Especially up there in the, you know, where the [inaudible 00:26:19] a lot of it is used for insulation in older homes. They're also seeing a big, you know, England and Australia have a lot of mesothelioma as does South Africa. A lot of places that, you know, developing third worlds company countries because they're still using it. They're still being exposed.

Right, it's inexpensive to use.

Yeah, yeah. Inexpensive and you know, it was only last year that Canada opened their mine again and then I think they did close it but they had it open again and they were exporting asbestos to China and to South Africa.

The good news is there's a lot of work being done.

Yeah. Mm-hmm (affirmative).

What constitutes exposure to asbestos? Is it inhaling or ingesting?

Could be both, right? You know, there's some theories that if you inhale it and then it's dormant then something makes it, triggers it, to develop into meso, into the beginning things of mesothelioma. If you talk to a lot of patients, a lot of times, you know, they're fine and then all of a sudden maybe they had an accident or they fell or you know, something, they don't know just what in the body seems to trigger it.

[inaudible 00:28:08] shortness of breath.

Mm-hmm (affirmative). A lot of them, too, are diagnosed by people thinking they had pneumonia. You know, they think they have pneumonia. That would be the common, it's not that that would be the most common thing to have. Obvious systems. It's reasonable to say that it was pneumonia, right?

Yes, absolutely. Everyone starts out with a pneumonia diagnosis and then when it doesn't go away. An evaluation reveals meso.

And it takes a while, it's getting quicker but a lot of times the initial biopsy might be negative and then they keep at it and, you know, maybe it takes six months to get the diagnosis of mesothelioma.

And also, the physician that they might be dealing with has never seen mesothelioma so he might not be aware of the characteristics of what the disease might pose. It's really far removed from a diagnosis.

Okay, so you would recommend finding different opinions, or getting different opinions when you have those types of symptoms?

Well, not everybody who has pneumonia is going to have meso.

Yeah, mm-hmm (affirmative).

You go to the doctors with shortness of breath, it's probably one of the, they say, "Oh we can [inaudible 00:29:43] pneumonia" when they do a chest x-ray, and they send you some antibiotics. I think it's a pretty routine thing. I don't think someone's, you know, I think it's the obvious that you would treat. Wouldn't you agree Ellie?

Yes, yeah. Yeah I think, you know, like Sharlene said, we see so many patients with mesothelioma, you start thinking that it's very common and it's less than one percent of all the cancer diagnosis in the United States. Less than one percent. There's a hundred more patients that have lung cancer and so it would be, their differential diagnosis probably would start with pneumonia and then you'd go from there.

I think the most important thing is that you have to, wherever you get treatment, you have to be comfortable with your team. You have to be comfortable with, you know, because all of the centers in United States, you need a thoracic surgeon, who's an expert on it. You need a medical oncologist that sees mesothelioma regularly. You need a radiation oncologist. All these people all come together. You need specialized nurses, you need social worker that knows what the journey is going to be like.

Most, I would say most of all the centers in the United States have those things. But if you're not, you have to just feel comfortable with your decision and you have to feel comfortable with the people that you're dealing with, you're at peace with.

I think it's really important. If you feel like you need to get a second opinion, then go for it because again, I think it's just vital that you're comfortable with your team. [crosstalk 00:31:41]

People sometimes are like, kind of skittish about getting a second opinion or they don't want to hurt anybody's feelings. You know, "Everybody was so nice" and all that. It really doesn't hurt anybody's feelings. It's really what is going to benefit you, that's what everybody wants. That's the most important thing.

I'm going to sign off if that's okay?

Yes. [crosstalk 00:32:15] Thanks for joining.

Okay, thank you.

My next question is, what is the next difference between pleural and peritoneal mesothelioma and are those the most common types of mesothelioma?

The difference is the location. Pleural mesothelioma is the lining of your lungs and mesothelium is one of your linings, it also lines your abdomen. Peritoneal mesothelioma is in the abdomen.

The treatments are different and I would say the success rates are a little different. I think peritoneal meso, it has better survival. Wouldn't you say Lisa?

I would agree, yes.

Yeah, yeah. Peritoneal meso is in your abdomen and that seems to affect, I would say, more women than-

I would agree with that as well.

And pleural meso is more of, definitely women, but it's two to one I think. Men are more affected by pleural meso. I guess there's four different places that you can have meso, mesothelioma. The most common one is pleural, the lining of your lungs. The second on is peritoneal, the lining of your abdomen. The third one is testicular, a very small percentage. There's probably one or two cases a year out of 3000, maybe four or five. But not many more than that. Cardiac mesothelioma. That [inaudible 00:34:27] goes is very difficult to treat.

They both have some major ones, peritoneal and pleural. They have different, there's different treatments for them and there's experts in just peritoneal and in just pleural.

Mm-hmm (affirmative).

You know, sometimes, too it seems like the hyperthermic chemo kind of started with peritoneal and then they've been trying it in pleural. They do, some of the treatments might look the same, but it's just different energies.

Do you know any specific drugs that are being used to treat, that are immunotherapy being used to treat mesothelioma?

So, as of right now there's clinical trials and if you go on clinicaltrials.gov, I actually found three trials that were posted, that were still actively recruiting which means they're accepting patients. One of the trials was age 18 to 70 and each trial has it's own specific criteria to be able to enter into that program.

There's no immunotherapy drug that the FDA's approved. It's all clinical trials. So there's one at the NCI in Washington. Is it Washington NCI? There's one in the Netherlands, which is ever so convenient. Then the Fred Hutchinson Cancer Research which [inaudible 00:36:30] Those were the three that were actively recruiting people who wanted to roam immunotherapy. But, nothing's been approved by the FDA as of yet.

Immunotherapy itself is a type of cancer treatment that the people are trying to develop that uses the body's natural defenses to target the cancer. They're trying to boost the immune system, either by doing something [inaudible 00:37:10] by taking the pill or doing something to improve your immune system so that will in turn fight the cancer cells.

Right, so the body will attack any visual cancer cells.

A little bit like a natural defense for cancer. That's the whole idea behind it. Which, like Lisa was saying about the clinical trials, that's where progress is going to be made. And that's where progress has been made with meso, you know, is these clinical trials. Luckily, there are quite a few of them now as opposed to a few years ago when there weren't so many of them. That's one of them.

There are quite a few clinical trials, if anyone's interested in clinicaltrials.gov and it gives you a box where you can pop in mesothelioma and they list all of them. You know what, there's a lot and I think you could probably arrange something if you want to get involved in those clinical trials. You know, truth be told, it helps everybody.

Yeah. Yup. And it's the only, it's the way it is, everything's going to progress is if people get involved in clinical trials. For the [inaudible 00:38:31] across the country, there's only less than five percent of all cancer patients are involved in clinical trials.

Yeah, it's really minimal.

It's very.

And that's where they get [inaudible 00:38:42] from.

Yeah, that's where progress is gonna be made. I think some of the reasons that people don't enroll in them is because a lot of times, I think they get afraid. You hear something on the news, or I was at a conference a couple weeks ago and there were patients there and they said, "Well, you know, why would I enroll in a clinical trial and end up being guinea pig?" And it's like, well no, that's not how it works. But that's not uncommon for someone to think like that.

In the clinical trials, you have to, everything is informed consent. You have to understand, you know exactly what you're signing up for and what you're not signing up for.


So, for instance, this command trial that they just stopped? That was a trial. All the patients knew exactly what they were signing up for. It was a trial that was, you had to meet the requirements. It wasn't like you were going to be quote unquote a guinea pig because in order to do it, you have to have already had the conventional therapy. And then they are doing this in addition to see if it could hold off reoccurence. It's just so many different [inaudible 00:40:01] you just can't say, "I don't want to be in a clinical trial because I don't want to, I won't get the best treatment." It's just not the facts.

So, again, it comes back to that whole team. You go talk to your oncologist, you talk to your surgeon and see what's available and what they would recommend. Because they all, you know, do work together and it's all such a small population that they might know of a clinical trial or they might know of someone that's going to be starting a clinical trial. Then, you'll be able to get involved in that.

My next question is, what is the best comparative cancer treatment to look at that might help guide me and my family? What is the relationship to melanoma?

So, the relationship between mesothelioma and melanoma. I think they started working on this back in 2011 and it's the B-Pap 1 gene, so it's B P A P one. And they noticed that some characteristics were the same, that if you were exposed to asbestos, and you had this gene, you were more apt to get mesothelioma. If you have this gene you were more apt to get melanoma of the eye as well.

They're still continuing to do research. I really don't know if there are any other characteristics besides that major one. Ellie, do you want to say anything about that?

Yeah, isn't it like a gene, they're looking at it like, you said, the same kind of mutation that's in one, that's in the other. Again, it's something that research has kind of just brought up recently but it's, I'm trying to think of a, as far as another, I mean there are some other aggressive cancers. I mean, mesothelioma is an aggressive cancer. There are some other aggressive cancers, but nothing I can think of that kind of mimics those?

I guess the other point, too, that we haven't made is that some people seem to do better than others and they're not sure why that is. Some people with the same type of mesothelioma, there's three different types, and some people seem, live longer time, five, seven, ten years. And others with the same type might not and that's, again, that's what they're trying, that's what they're working on.

Okay, I think Lisa went offline. Maybe she's having problems. We only have one question, left. I don't know if we want to touch on this. Why do Navy Veterans make up a large portion of the cases? And Veterans, what options do they have? Do they have to go to specific VA centers for treatment or...?

Okay, so Veterans make up one third of all mesothelioma patients in the United States. There's 3000 so that's about 1000 a year. The reason is probably, the shipyards. Navy people are, the asbestos in the boiler room and in different cargo carriers, different areas. But mostly the shipyards and things like that. There's a third of all of them, all the Veterans, a third of all the mesothelioma patients will be Veterans.

The VA has done a lot in the last two years to acknowledge the veterans and they've actually fast tracked it. If you can prove your exposure, which they have made easier to do, then it's easier to get some help, compensation, from the government. There are, in Boston I know there's Dr. Levenball. He works with the VA in West Roxbury and he has mesothelioma Veterans coming to see him from around the country.

I think there's another one on the west coast but, you know, you have to, with the VA, you have to just kind of push a little bit. But it's been much more responsive in the last few years because of the, and like I said, it has been fast tracked for Veteran's benefits.

That's good.

But, yeah, it's been one third for, pretty much, many years they're Veterans. Unfortunately, I don't know if a lot of people connect that. They explained it to them, but it's kinda hard to believe that 20 to 50 years later, your service that you gave to your country is now coming back to kill you.


I think it's about time to close out this year's Q and A session. I want to thank you Ellie, Lisa and Sharlene for taking the time out of their evenings to provide us with more information about mesothelioma. If you would like more information about the disease, please visit mesotheliomahealth.org and I hope everyone has a great evening.

And Lisa and Ellie have a website, the mesonurse.com. Is that correct?

Yes, yeah.

Okay so you can find more information there, too.


Thank you very much.

Thank you very much.

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