My lymphoma story has taken a circuitous route to finally find that I have had MALT lymphoma since at least 1992.
I had what my GP thought were lipomas on my buttock. My medical school son said "They shouldn't hurt and burn, Mom, get a biopsy." So I did. I was told I had a malignant lymphoma and "at the very least you'll need chemotherapy." A second, frozen biopsy was done and sent to Mayo at Rochester for a second opinion. Their opinion coincided with the first. By the way, I had NO symptoms, other than the uncomfortable bumps.
Living near Chicago, I went to a highly regarded doctor and medical facility there, and was thrilled to be told that I had a benign condition, lymphomatoid papulosis, and that they could recognize it better than even Mayo, "because we see more patients than anywhere else in the country." Well, that was good enough for me. Who would question such good news from such a source? I was told that the longer I went with 'just' the benign condition, the less likely it was that it would transform into a malignancy. I went in regularly for checkups and blood tests.
In 1995, I noticed a lesion at my waist which was larger, harder, and hurt more, but I didn't call my oncologist about. I waited several months for my next regular appointment. You see, he had treated any questions or fears I had voiced to him since the first diagnosis as though I were needlessly worrying when all I had was a benign disease.
The tumor was biopsied--against my oncologist's gut-reaction that it was 'just an induration.' It turned out to be a highly aggressive MALT, and in further tests and scans, three lesions were found in my lungs. I had a thoractomy and malignant cells of MALT origin were found, as well as some disturbing large cells. The oncologist said he had no idea if the two areas were related, but that I definitely must be treated.
I had 6 CHOP treatments, with severe reactions to vincristine and to compazine, meaning that my first 3 weeks couldn't have been worse. However, I obviously lived through it, and the lungs and waist, and even the buttock, lesions disappeared. Within 30 days, the 'benign' lesions returned, and when I expressed concern, he said, "Oh, we knew they would do that. Don't worry about it, they're just benign."
Boy, lucky me, I thought. Well, I continued returning for checkups, blood tests, etc. After a year the doc wanted to forget about regular CT scans. I asked for at least yearly scans, and he acquiesced.
In January of 1999, a mammogram, ultrasound, and biopsy revealed low-grade MALT in a tiny site in my left breast. I was very disappointed, because up until then I thought I had NEVER had low-grade b-cell lymphoma, and that I had been CURED of the aggressive lymphomas in 1995. I decided to begin researching on my own. In June of 1999, a surgical biopsy of a lump I had found in the other breast, and which the doctor said "we wouldn't do anything about that", revealed low-grade MALT. The oncologist explained 'Watch and Wait'.
After hours, days, and weeks, between that January and June, I had realized that my original diagnosis in 1992 had to have been wrong-I was certain that I had first presented with low-grade MALIGNANT lymphoma, and had lost the opportunity way back then to have it treated and CURED. In questioning my oncologist, he subtly let me know I was correct, and he was very indirect about it and made no apologies. In fact, he said, "Well, look at it this way. You have survived 6 ½ years of cancer, and you're still alive." He assured me that the prognosis for extranodal MALT was very good.
I also found out that the Hep C that I had contracted in 1964 through a blood transfusion can trigger lymphoma. My liver is still in good shape, so it was decided not to treat the Hep C. I guess I'm comfortable with that. I demanded treatment for Hep A and B, and H-pylori, which was the cause of the bleeding ulcer causing me to need the transfusions in the first place (I don't have gastric MALT-yet).
Last week, I found a small mass below my rib cage. He said, "We wouldn't do anything about that. No need for a biopsy." I accepted that. However, a few days ago, I noticed a large, different-feeling (different like the lump I'd had at my waist that was highly aggressive) area on, in, or under my shoulder muscle-it's hard to tell. I called the oncologist and described it to him, and he told me to "ignore anything under the skin. It's low-grade. We won't do anything about it anyway. You don't need a biopsy." I followed up with a consult with a surgeon, and the difficulty of getting a biopsy won out—I decided to keep watching and waiting.
I’ve accepted the fact that my case is turning out to be quite unique and unpredictable. I have had lymphoma at other sites, well--here’s a thumbnail update—
10/99--Malt surrounded one optic nerve and muscle of other eye, tx radiation
2/00--Dx now MALT which “looks Follicular, or small, well-differentiated, under the microscope”
2/00--Rituxan X4, responded well/6/00, CT scans clear
8/00—Rituxan X4, hoping to extend remission in the eyes, since ability to tolerate re-treatment to they eyes is very doubtful. Liver enzymes began to rise during this course, indicating potential for future liver problems when treatment of nhl again becomes necessary.
9/00—Began Rebetron HCV treatment (interferon alfa plus ribavirin).
12/01--HCVirus count NEGATIVE.
12-01—CT scans revealed enlarged mediastinal nodes.
7 & 8-01---I have been neutropenic and show other low blood counts since starting the Rebetron, so they have cut me to half doses of the interferon and 1000 mgs Ribavirin rather than 1200, yet I continue to have a ZERO virus count. Feeling lousy, of course, but if I end up free of HCV after my year’s treatment ends, it will have been worth it. That chances are 30% that I’ll have a lasting remission, but that’s better than nothing.
8-01—School starts soon, and I’m just about ready to go back. I continued teaching through all my treatments except for CHOP. I’m glad, because I love to teach, and this has been an experience in life and survival for my adolescent students.
11-01—Darn. Pet, CT show lesions in chest (mediastinal) and subcutaneous lesions in area of abdomen (I can feel those). However, W & W is fine.
02-02—CT scans of everything show little change.
03-02—On trip to Europe got ‘second’ opinions on my case. Result: agree with my docs on dx and tx.
06-02—Cataracts I gained during chemo had worsened with the radiation, so I had cataract surgery. Pretty easy. I had lenses which correct for close work—kind of nice.
07-02—Well…. I’ve developed scar tissue at site of cataract surgery (I do tend to ‘overgrow’ scar tissue). In 2 months I will have laser treatment to remove it. It affects my vision greatly.
09-02—Well…..again. I had the laser to my left eye first, and now they don’t want to laser the second—because I had a severe complication: HSV infection in that eye. Probably due to my compromised immune system, they think.
01-03—Still suffering poor vision in left eye. Got new eyeglass prescription. Absolutely can’t drive, read, etc, in low light. --MRI of skull, orbits, abdomen, pelvis, and xray of chest show no change: good news.
07-03—vision problems continue but eye doc says I’m fine.
12-03—MRIs, CT unremarkable. Blood tests fine, as usual. Eye dryness still frustrating. I’m using natural tears without preservatives (very important).
06-03—I am now retired from teaching but keeping very active. Next tests and doc visit coming up in December.
Wish me luck! I’m still around and kicking!
Written by Carol Lee © 1999-2003
Updated 10-28-2003
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