August 2000 Updates
Bruce's Non-Hodgkin's Lymphoma Story

March - August 18, 2000
In March 2000, Bruce developed some rectal pain. I'll spare you all the details of the past few months but, you need to know that after going through a variety of tests, enduring pain for many months, and being misdiagnosed, Bruce's problem was finally found. He had a complex horseshoe fistula, with three abscesses. The core was up under his tail bone, and the resulting needed surgery was more complicated than the colorectal surgeon had expected it to be. Two separate biopsies revealed no signs of lymphoma (nor did they point to Crohn's Disease or Ulcerative Colitis), but this unrelated problem affects his ongoing story. As of August 18, 2000, almost a month after his surgery, Bruce's gaping wound was only about half way healed, and he still had a cutting Seton in place.

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Saturday, August 19, 2000
When Bruce was shaving, he was surprised to see a visible ball of enlarged lymph nodes on the right side of his neck. They hadn't been there on Friday! This is the way his Non-Hodgkin's Lymphoma (NHL) had presented itself before. Both when he was originally diagnosed, and when he relapsed the first time, enlarged lymph nodes appeared suddenly and unexpectedly.
Bruce called his primary care physician (PCP), with the hopes that the enlarged nodes were related to his surgery, and that he wasn't relapsing. Being Saturday, a physician's assistant (PA) was covering for Bruce's PCP. He said Bruce should come in right away.
As we were walking into the medical building, I noticed a smaller mass of enlarged nodes on the left side of Bruce's neck. Two hours earlier I had checked Bruce's neck to see if he had any other enlarged nodes. I hadn't been able to even feel any on the left side, let alone "see" any!
The PA confirmed that the "balls" were indeed enlarged lymph nodes. He made Bruce an appointment with his PCP for Monday, and he said Bruce should make an appointment to see his oncologist (onc) ASAP.

Sunday, August 20, 2000
Bruce's lymph nodes are slightly larger and he has some new ones in his throat area. He also feels a tightening in his chest.

Monday, August 21, 2000
Bruce's PCP believes Bruce has relapsed with non-hodgkin's lymphoma, and he said Bruce should see his oncologist ASAP. Bruce told him he had called to make an appointment with his onc that morning, and that he would be seeing him on Tuesday. His PCP responded, "If he tries to cancel for any reason, let me know and I'll do what I can to get you in tomorrow." He implied that it was URGENT that Bruce be seen right away!
I asked the PCP if something else couldn't be causing Bruce's enlarged lymph nodes. Perhaps they're related to his surgery? Or maybe it's the West Nile Virus? (The West Nile Virus is present in the county we live in, and Bruce has been bitten by mosquitoes.) His PCP shook his head and said, "I wish it was the West Nile Virus! He solemnly added, "I believe it's the lymphoma.".

Tuesday, August 22, 2000
Bruce saw his oncologist and he agrees with the PCP - Bruce has relapsed.
Bruce has lost 3 more pounds.

Wednesday, August 23, 2000
Bruce had a bone marrow biopsy done.

Friday, August 25, 2000
Bruce had a check-up with his colorectal surgeon. Thankfully, Bruce has been healing ahead of schedule. It's been a month since his surgery, and the surgeon thinks it'll only be another month until Bruce is completely healed (originally we were told that total healing would take 4-6 months). Although the Seton was supposed to remain in place until all healing was complete, and then be tightened twice under anesthesia before it was finally removed, the surgeon said he "might" be able to remove it in 2 weeks. He said treatment for the NHL had to take priority!

Monday, August 28, 2000
Bruce had CT scans of the chest, abdomen, and pelvis done.

Tuesday, August 29, 2000
Bruce saw his oncologist and got the results of his tests. In addition to the enlarged lymph nodes in his neck, Bruce also has enlarged lymph nodes in his chest. The good news though is, Bruce has NO bone marrow involvement! This was a pleasant shock, as historically Bruce has always had high bone marrow involvement.
Bruce's onc had been hoping to avoid doing a lymph node biopsy, since Bruce's immune system has been fighting infection since March, and it's been working hard for the past month to heal the wound from his surgery. The oncs plan had been to do a flow cytometry of the bone marrow, to learn what he needed to know. Since Bruce doesn't have any bone marrow involvement however, he'll need to have a lymph node biopsy done after all.
Bruce's onc said Bruce doesn't have many treatment options right now. He can't have standard chemotherapy, because of what it does to his blood counts. Additionally, because of the wound from Bruce's surgery, the risk of an infection killing him is too great. For this latter reason, Bruce's onc doesn't think the clinical trial drug, Bexxar, is an option right now either. He will however, look into it. The monoclonal antibody, Rituxan, could be tried but, it's unlikely to have any positive effect. Bruce has previously had an antibody that's very similar to Rituxan and his NHL progressed immediately after receiving it.
We know Bruce doesn't qualify for most of the vaccine trials that are currently going on however, we got a lead from an internet acquaintance (thanks Lurdes!) that he might qualify for one being done in California. After his appointment with the onc, Bruce called the contact person to inquire about the vaccine trial. He learned that he doesn't qualify for the trial that's currently going on but, he "might" qualify for it when it's expanded in about 6 weeks.

Wednesday, August 30, 2000
Bruce's onc called to tell Bruce that he hasn't been able to get in touch with the doctor at Stanford, CA, who treated Bruce when he participated in a randomized trial there (using Bexxar vs an unlabeled antibody) 3 1/2 years ago. His phone has been disconnected and they say he's no longer there!
Bruce's onc has placed a call to a different doctor at Stanford though - he's waiting to hear back from her. He's also going to call a friend of his in Boston. She's a specialist who is also involved in a clinical trial using Bexxar. "If" Bruce can get Bexxar, it would be nice to only have to travel to Boston, and not across the country to California! We're hoping and praying that the lymph nodes in his chest don't grow quickly, and that his wound does heal quickly. However, we think a part of his wound might now be infected.

Thursday, August 31, 2000
Bruce had an appointment with the surgeon who will be doing his lymph node biopsy. A few nodes will be removed from his neck on Tuesday.
While Bruce was there, he had the general surgeon look at his surgical wound. A part of it "is" infected! The surgeon created a hole about one and a half inches deep. If the redness and inflammation haven't improved by tomorrow, Bruce will call the colorectal surgeon.

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