Pre-diagnosis

Tell us about yourself

I live in the United States, in Pittsburgh, but I was born in Italy, came over when I was six months old, and got my citizenship when I was six years old. I had your basic American upbringing [and] had a little bit of Italian spoken in the household. I was bilingual initially and still retain some of that.

I’ve been working as an accountant for a long time. I gravitated towards working in financial systems because I also like playing with computers so I’m sort of a financial systems analyst, a hybrid of sorts.

I have a family and three kids. Two of them are married and two grandchildren came in the past year and a half.

It was so bad that I would end up with blood going down my shirt from the nosebleed. I would wipe it up or try to hide it at least and then get the heck out of there. But it happened fairly frequently so then I thought, something’s going on, but I’m too busy. Every once in a while, it would stop so I didn’t think anything of it. It’s a pretty good flow coming out of your nose, which is not normal even for someone who normally gets nosebleeds.

I also had a colonoscopy because I have Crohn’s disease so I do that every couple of years. Part of that is the blood test workup. At around the same time, my gastroenterologist called and said, ‘I saw some funny numbers.’ He might have said elevated protein, but it didn’t mean anything to me at the time because I didn’t pay attention to that stuff and I ignored it.

Three months later, he called and said, “Did you ever call that number that I gave you?” I said, “No, I got busy, I forgot.” But he said, “It’s really important that you call that number right away.” He didn’t say anything else.

Diagnosis

It takes a couple of weeks to get the results. We went back to see him and he basically said, “I’m not certain, but it appears to be a rare form of cancer that’s not curable. You should really think about getting your affairs in order.”

Getting a second opinion

We were in shock, but we sat back and said, “Okay, I’ve already had one chronic illness. Let’s add another one to it. Let’s move on. There’s got to be something we can do.” We said, “Okay, I appreciate your opinion, but can I get a second opinion? Because I can’t believe that I can’t do anything about it and I’m going to die in six years.” He did say, “Well, that’s your prerogative and that’s your opinion. I’ll be glad to give you the name of someone else who’ll probably be more than willing to treat you right away.”

I thought, well, that’s an odd attitude to take, so I’m glad that I’m getting [a] second opinion. The doctor that he sent me to was actually a pretty good doctor. Right away, I had a good relationship with him and that’s when I started treatment, right away at that point.

It’s important, especially when you have a rare form of cancer, to seek out those centers of excellence.

That first doctor had that attitude and maybe he was right, but that attitude of I know what I’m talking about so don’t question me. Even his staff, when I would call and say, “Hey, why is he requiring this test?” Or “Why does he want me to do this?” They would say, “Well, why would you question that?’ And wouldn’t even answer the question. I knew right then that definitely I’m not going to this place again.

The second doctor was much more open. He sat down with you. He drew charts. He explained. He said, “Okay, you have Waldenström macroglobulinemia and we’re going to treat it. This is how we’re going to treat it. This is standard treatment at this point in time and just because you see a lot of statistics out there, that’s an average. That’s just the median. Some people live shorter, some people live a lot longer. And given that you’re diagnosed at an earlier age, there’s a good chance you’re going to live for a lot longer than those six years that they’ve been quoting to you. Plus, I have the ability to consult with a lot of other researchers and hematologists in our practice and in our hospital system. We’ll discuss your case and we’ll treat you accordingly.”

We laid it out to them straight and said, ‘Look, dad has cancer,’ and try to tell them in as simple a way as possible.

Breaking the news to the children

Once we found out exactly what I had, did a little research on the disease, and then found that it wasn’t an immediate death sentence — because I was diagnosed at 43, which is unusually early for this disease — we decided that because I had to go into treatment right away and I could be pretty weak from the treatment — could have some odd side effects — we felt it was important to let the kids know if I’m not going to be around to take them to soccer practice or any of their school events, they should know why.

We laid it out to them straight and said, “Look, dad has cancer” and try to tell them in as simple a way as possible, that it’s serious but it’s treatable and we just have to go with the flow and I’ll be around for a long time. I’m not going anywhere.

I always told my wife that she can’t get rid of me that easily. We’re honest and upfront, but we’re willing to answer any questions they had. The older ones were fairly intelligent to figure out how to find information, but we did try to answer their questions and were upfront with them. That worked for us.

Initial treatment

I [started treatment] right off the bat in 2003 with Cladribine.

First relapse

Expectation setting

With Cladribine, the thinking was I should get two to five years of response. They don’t like to use the word remission if you’re in a recurring kind of cancer. That was the expectation and unfortunately, I didn’t even get that.

[I was getting] monthly blood tests at that time. We saw the numbers — their marker, which is immunoglobulin — the IgM marker dipped down a little bit but started rising right back up again. We knew it wasn’t working.

Getting information on new treatment

At that time, Rituxan was fairly new. I questioned the doctor and our patient community [about] what they knew about it, how well it worked, and whether it was dangerous long term. In hindsight, that was a dumb question to ask but who knew back then?

Always go through that process of looking at what’s out there. I’m able to access some medical journals because I work at a university so I follow what’s happening in my disease and related diseases. I’m always looking at the research results of newer novel agents in related diseases — like CLL, WM, multiple myeloma, or other diseases — just to keep track of what’s up and coming and see what are the side effects.

With any novel agent — like for Waldenstrom’s, the newer ones are the BTK inhibitors and so I read up on the side effects of BTK inhibitors. Now granted, when it first comes out, you don’t have a long period of time to figure out the long-term effect.

A couple of the noted experts would always tell me, at least right now, there is no safe treatment. They said, in fact, the best treatment is no treatment at all if you don’t need treatment. But every treatment has some side effects so it basically comes down to “pick your poison.” The idea is what gives me the best potential for a longer period of quietness and minimal side effects.

Second relapse

Symptoms

I did notice that I was starting to get a little bit more tired, a little bit more fatigued. I was watching the chart and would show it to the doctor. He would kind of smirk a little bit but then he would look at it. He would say, “Yeah, you’re right, it is going up but it’s not too bad yet and you don’t seem to have severe symptoms so go enjoy yourself. Have a good time.”

As much as I do, he knew the quality of life was important. He said, “Go, and then when you come back, we’ll talk about your options.” We did a month-long vacation to be with relatives and do all the tourist stuff in Italy and had a great time.

Towards the end, I was sleeping longer and started to get a cough that wouldn’t go away. I got some medicine there from a local doctor. It was some kind of injection of an antibiotic that they told me when I came back here was pretty strong stuff. I still was very tired and fatigued. I knew something was wrong. The trip back was not fun.