Gerald's Journey Through Follicular Lymphoma



Parameswaran Venugopal, M.D.: So today we are joined by Mr. Gerald Koch, who has a diagnosis of follicular lymphoma, and he has been kind enough to come and share with us some of the stories related to his diagnosis. Gerry, can you tell us something about how you were diagnosed? What were your symptoms that led you to the doctor, and what did the doctor talk to you about? And what are the tests that he recommended? Just take us through the story if you can.

Gerald Koch: It was back in 2011. I had some back issues over the years, and I went into a doctor’s office to see what I could possibly do about relieving some of my back symptoms. I had an MRI [magnetic resonance imaging] and was shocked beyond belief when I received a phone call—actually, my wife received a phone call—that said that I had cancer and I needed to contact my doctor and go further. I contacted a doctor at MacNeal Hospital, and I was diagnosed with follicular lymphoma. I started a six-month treatment with Treanda and Rituxan, once a month for six months and then many months of maintenance afterward. And after the six treatments my cancer was gone.

Parameswaran Venugopal, M.D.: So going back to the initial diagnosis. You started with backache; that’s what you said. So you went and had a scan. I’m assuming they did a biopsy of the tumor, correct?

Gerald Koch: Eventually they did, yes.

Parameswaran Venugopal, M.D.: I see. Did they tell you what the diagnosis was, what kind of lymphoma it was at that point?

Gerald Koch: They told me it was follicular lymphoma, stage 4. I really had never heard of follicular lymphoma, so there was a lot I didn’t understand at first. But gradually I came to learn exactly what it was I had and what we were going to do about treating it.

Parameswaran Venugopal, M.D.: Did they do any other tests as part of the staging, like a bone marrow biopsy?

Gerald Koch: Yes, I had a bone marrow biopsy. Very painful but necessary.

Parameswaran Venugopal, M.D.: Right. Yeah, so the bone marrow biopsy is usually part of the staging to find out, No. 1, what the stage is. And No. 2, we had to make sure that if the bone marrow has lymphoma, at the end of treatment we had to make sure that he was clean before we called him in complete remission. So that’s the purpose of doing the marrow.

Gerald Koch: OK.

Parameswaran Venugopal, M.D.: OK, so the doctor met with you and talked to you about the results of each of the tests, right?

Gerald Koch: Yes.

Parameswaran Venugopal, M.D.: And was it stage 4?

Gerald Koch: Yes, stage 4.

Parameswaran Venugopal, M.D.: Did they say that your bone marrow has lymphoma?

Gerald Koch: Yes.

Parameswaran Venugopal, M.D.: So that’s the reason why they mentioned stage 4. Once the follicular lymphoma involves bone marrow, it is stage 4. Obviously, it’s an advanced disease.

So you got started on treatment. How did you feel when you started treatment based on the information that you received from the doctor about the potential adverse effects? How did you feel?

Gerald Koch: Well, I was a little apprehensive at first. The adverse effects weren’t as serious because I guess some people have different reactions. My biggest adverse effect from the first treatment was a little fatigue, a little nausea after the first day. I would generally take an anti-nausea pill, for just one day, and that kind of went away. I felt pretty good for the rest of the month until it was time to go back the next month.

Parameswaran Venugopal, M.D.: Were you able to work through the treatment?

Gerald Koch: I took off work because of the risk factors from infection. I’m a police officer, so I’m around a lot of people who might carry disease. I’m around a lot of people who get sick a lot, and my doctor felt it best that I remove myself from that situation. So I was off for the eight months that I was being treated.

Parameswaran Venugopal, M.D.: And did you have to interrupt treatment for any reason?

Gerald Koch: No, I pretty much went to six months with no problems at all.

Parameswaran Venugopal, M.D.: OK. And so you went for six months of treatment, that is six cycles of treatment.

Gerald Koch: Yes.

Parameswaran Venugopal, M.D.: And at the end of that, the doctor probably did some tests to find out how your cancer is doing, right?

Gerald Koch: Yes.

Parameswaran Venugopal, M.D.: What did he tell you then?

Gerald Koch: He told me there was no evidence of cancer, I believe, after the third treatment. As I said though, for a year afterward, I did go in for maintenance treatment.

Parameswaran Venugopal, M.D.: So maintenance treatment means you were taking just rituximab every two months, right?

Gerald Koch: Yes.

Parameswaran Venugopal, M.D.: Not chemotherapy.

Gerald Koch: Yes, rituximab.

Parameswaran Venugopal, M.D.: And how long did you take the maintenance treatment?

Gerald Koch: I think it was about a year and a half.

Parameswaran Venugopal, M.D.: Two years is usually standard. And then what happened? After the maintenance, did you stop the treatment?

Gerald Koch: Stopped treatment, but I was still seeing my doctor. And it was after a scan, I believe, that the doctor said that the lymphoma was reappearing. And that’s when I was referred to you at Rush [University Medical Center], and that’s where I’ve been ever since.

Parameswaran Venugopal, M.D.: Right. At that time did you go through more tests?

Gerald Koch: I went through some more tests. Eventually I was put on a clinical trial treatment. I was on that for several months. That ended up not working out as planned. There was progression of the lymphoma. I was then put on another oral treatment that I was on for about a month, and I had a bad reaction with my liver, so they took me off that. And it was about 10 months later that I started my current treatment.

Parameswaran Venugopal, M.D.: So the treatment that Mr. Koch initially went through is a combination of bendamustine and rituximab, which is one of the commonly used first-line treatments for follicular lymphoma. It is very effective, and it also has much fewer adverse effects than the R-CHOP [rituximab plus cyclophosphamide, doxorubicin, vincristine, and prednisone] chemotherapy that we used to do in the past. But subsequently there was a trial comparing the two, which clearly showed that the benefits are the same with much less toxicity. That is why this combination, which Gerry got, has become standard first-line treatment outside a clinical trial.

And after the first six months of treatment it is appropriate to keep the patient on a maintenance with rituximab, and usually we give it for two years. And after that we watch the patient, as was done in Gerry’s case. Unfortunately, the disease came back, which, as you know, in follicular low-grade lymphoma the disease responds well to treatment but has a tendency to come back. But fortunately we have many good options now, so when they come back with the relapse, we are able to keep them back in the remission and keep the quality of life.

It’s also important to know that when there is suspicion of relapse, the disease coming back, it’s always a good idea to do a biopsy again. One, we want to make sure it is lymphoma; and two, we want to make sure that the lymphoma has not changed. Sometimes low-grade lymphoma can change and become aggressive lymphoma, for which the treatment is quite different. That’s why a biopsy is very important, and that was the appropriate thing to do.

So then you went through a clinical trial—and clinical trials, as you know, are always the best way to get new medications even before FDA approves them—and that is exactly the reason why the doctor offered this approach. Gerry and his wife went through the research and found out exactly what the drug means and what are the adverse effects, and you know it was an informed decision on their part to participate in that. And he started the pill. Unfortunately, it didn’t work very well. So then he stopped the research trial and they put him on a drug that was at that time FDA approved.

And as Gerry said, after taking that pill for some time, he had significant problems with his liver function, so the drug has to be stopped. And then, subsequently, we started him on another drug that is a PI3 [phosphatidylinositol 3] kinase inhibitor.

Transcript Edited for Clarity

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