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


Friday, October 06, 2000
Since I last wrote, the pressure and discomfort in Bruce's chest have continued to worsen. He had an appointment with his onc today, and his onc thinks it's because the tumors in Bruce's chest are getting larger, and they're squeezing his heart and lungs. His onc also thinks it's likely that there are lymphoma cells in the fluid around Bruce's heart, and he'd like Bruce to start treatment asap.
Bruce had blood drawn for the HAMA (human anti-mouse antibodies) test today. This test is necessary because Rituxan (hopefully, the first treatment he'll be receiving) is part mouse antibody. Bruce has had mouse antibodies in the past (Anti-B1) and one can become allergic to them, meaning they can't receive them again. If Bruce *hasn't* become allergic to mouse antibodies, it'll be OK for him to have the Rituxan. If he *has* become allergic to them, the tentative treatment plan will have to be thrown out the window, as Bruce won't be able to have the Rituxan (nor the Zevalin - nor Bexxar). It would also mean NO treatment, until his surgical wound has healed. Let's hope his body still likes mice!
Bruce's onc is going to call the specialist in Boston on Monday (she's currently out of town), and he's going to call Bruce on Monday, after he's spoken with her. Bruce will be having the injection for his Gallium Scan on Tuesday, and a week from Tuesday he'll have the actual scan done. Friday, he's having the pulmonary function test done.
We took some educational materials, from the Lymphoma Research Foundation of America, to the Cancer Center today. They'll be displayed during this coming week, which is National Lymphoma Awareness Week (Oct. 8-14). If you'd like to help raise Lymphoma Awareness, please visit the page Things you can do to help.


Sunday, October 08, 2000
The good news is, yesterday was the last day I had to pack Bruce's wound. It doesn't look red or infected today, and there's no pain, so now all we have to do is wait for the skin to grow over it.
The bad news is, the lymph nodes in Bruce's neck grew considerably over the week-end, and the discomfort in his chest has gotten worse. He's also having increased breathing difficulties. As a result, we don't feel we can risk waiting to get all the test results, so he can be included in the clinical trial. As soon as we get the HAMA test results (which will hopefully show that he *can* have Rituxan), he'll probably do as his onc suggested, and he'll start Rituxan ASAP.


Monday, October 09, 2000
Bruce's onc called this evening. He spoke to the Boston doctor and it sounds like Bruce will be able to do both - start treatment this week *and* still participate in the clinical trial! Bruce is going to have a bilateral bone marrow biopsy done on Wednesday and immediately afterwards, he'll start Rituxan. He'll have two treatments of Rituxan, a week apart, and then he'll start the combination chemo drugs. After Bruce has the combination chemo drugs, he'll have more Rituxan. He forgot to ask whether it'll be two or four treatments he'll have then - we'll ask his onc about it on Wednesday.
As for the HAMA test, the specialist said it shouldn't matter if we don't have the results yet, as Rituxan has only a small amount of mouse antibody (it's mainly human antibody).
If Bruce's surgical wound hasn't completely healed yet, when it's time to start the combination chemo drugs, the specialist said they can inject it with growth hormone factor and it'll heal up quickly - almost instantly. Amazing!


Wednesday, October 11, 2000
Bruce did NOT end up having treatment today! As I said earlier, he was supposed to have a bilateral bone marrow biopsy done first, and then receive the Rituxan. A special tube, that was needed for the bone marrow biopsy, was supposed to arrive by Fed Ex before 10 am (the time of Bruce's appointment). When it still hadn't arrived by almost noon, his onc said that since the bone marrow biopsy had to be done first, and the Rituxan could take 5 or more hours to receive, we may as well postpone treatment until tomorrow.
The reason the bone marrow biopsy needs to be done first, is because of Bruce's desire to be in the clinical trial (it's one of the requirements). The reason why a special tube is needed, is because Boston needs to check Bruce's PCR (polymerase chain reaction) status before he begins treatment, so they can compare it to his PCR status after he's finished the trial.
The good news is, just before we left the Cancer Center, they got a call that the tube was on it's way and should be there soon. So, everything should be a "go" for tomorrow!
Bruce's chest discomfort is continuing to get worse and last night he had trouble sleeping because of it. Please be saying prayers that the Rituxan will work, and that it'll work quickly!


Thursday, October 12, 2000
Yeah! The tube came in! Bruce had the bone marrow biopsy done today, and then he got the Rituxan. Bruce's onc said if Bruce has cancer cells in the fluid around his heart (which he thinks he does), there could be cardiac problems when the Rituxan hit them, so he wanted Bruce's heart to be monitored while he got the infusion - "just in case". Bruce started out in the Critical Care Unit, and then he was moved to the regular cardiac floor.
When Rituxan's given, they start out with a low dose for about 1/2 hour. If you tolerate that well, they turn up the amount a bit more, about every 15 minutes. If a person doesn't have trouble with it, they keep turning it up until they're giving 400 cc an hour.
We were told that if there are going to be side-effects when getting Rituxan, the worst problems are usually during the first hour of the infusion. Bruce likes to be different though! *grin* During the first hour, he felt great! BUT, as soon as the first hour was up, he started having problems. His blood pressure dropped, his pulse went up, he got a bad case of the rigors, his temperature spiked, and he vomited. The infusion had to be stopped for an hour.
We had been told that the average length of time it takes to get Rituxan is 4-5 hours. It took 7 hours for Bruce to get it. The highest he ever got up to, was 120 cc an hour.
The worst side-effects from Rituxan, are during the actual infusion. Tonight, the only side-effects Bruce has from the Rituxan so far, are achy joints...He still has the pressure in his chest from the enlarged lymph nodes, and he's a little sore from the bone marrow biopsy.
Bruce's next treatment with Rituxan will be next Friday, and that treatment's expected to go a lot easier & more quickly than today's treatment did. As long as his surgical wound's healed, he'll start the heavy duty stuff the following week...Tomorrow, Bruce will be having his pulmonary function test done.


Friday, October 13, 2000
Bruce thinks he did "OK" on the pulmonary function test, although he knows he didn't do as well as he would have a few weeks ago, before the pressure in his chest started affecting his breathing.
Last night, Bruce had drenching night sweats (although a symptom of lymphoma, they're also a side-effect of Rituxan). Today, he's been VERY achy, slightly nauseous, and he's had no appetite.
Although Bruce still has the discomfort in his chest, he thinks it's ever-so-slightly decreased, and he seems to be breathing a little bit easier. We're both feeling very optimistic - we believe the Rituxan's working!!


Tuesday, October 17, 2000
When I said the tentative treatment plan was subject to change on a moment's notice, I didn't think it would be changing this early in the game. However, there's a possibility that it might be! We're in communication with the Boston specialist about it - a few things have to be checked into, before we'll know for sure. If the treatment plan *does* change, we'll be spending a couple of weeks in Boston in the very near future. To our friends who live in that general area, we might need to beg room & board from you while we're there. To our friends who live in this area, we might need to beg assistance from you to take care of things on the homefront while we're gone.


Thursday, October 19, 2000
It still isn't definite, but so far it's looking likely that Bruce's treatment plan is going to change. However, he'll still be getting the treatment of Rituxan tomorrow. We have to be there early in the morning. They're allowing plenty of time for it this time! *grin* We'll also be getting the results of his bone marrow biopsy, gallium scan, and pulmonary function test, while we're there.


Friday, October 20, 2000
Bruce had no reaction at all to the Rituxan today. The infusion only took 4 hours!
Bruce's treatment plan has changed again, because of the fluid around his heart. We're back to the original treatment plan.


Wednesday, October 25, 2000
I've taken off the link to Bruce's treatment plan because, it might be about to change yet again! We're not sure what, where or when though.


Thursday, October 26, 2000
Bruce had an appointment with the colorectal surgeon today and his surgical wound has been declared, "Completely healed!". Yeah!!! One obstacle down, one to go!
Bruce will be having another echocardiogram done tomorrow. Please say prayers that this one shows there's no longer any fluid around his heart!


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