OldFart's Journey with Lymphoplasmacytic Lymphoma (Waldenstr...

Patient: Non-Hodgkin Lymphoma (NHL) > B-Cell Lymphoma > Lymphoplasmacytic Lymphoma (Waldenstrom Macroglobulinemia)

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 1 year ago, Male, Age: 71, Stage II

  1. 1
    • OldFart
    • Experience with Lymphoplasmacytic Lymp...
    10 months ago
    OldFart's Avatar

    Misdiagnosed

    Oh No

    After a year of local testing for medication side effects, diabetes, congestive heart failure, COPD, hypochondria, etc a local doctor told me after a chest CT that I had tumors in my right lung. For the next 7 weeks after additional tests including a bronchoscopy, all they talk about was "lung" and "cancer". I requested a referal to the NC Cancer Center at UNC for an expanded mediastinoscopy procedure. Within 24 hours of returning home the surgeon called me to tell me that I did not have lung cancer. So it was an "Oh No" followed sort of a "Celebration" point. She referred me over the NC Cancer Center's Division of Hematology/Oncology for further diagnosis. After another 6 weeks of tests and biopsy's, including sending tissues to Mayo for testing, they settled on the variety of Waldenstrom's they think I have, and how they would start to treat it.

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  2. 2
    • OldFart
    • Experience with Lymphoplasmacytic Lymp...
    10 months ago
    OldFart's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    24-Feb-2019: I started Rituximab-Bendamustin the 1st week of January 2019. 6 cycles every 4 weeks. At the strong recommendation of NC Cancer Hospital Hematology-Oncology dept, I am travelling to Chapel Hill for the treatments. As my wife is also in her 70's and it is a 4 to 5 hour drive, we drive up the afternoon before and spend 2 or 3 nights before returning home. I have finished 2 cycles as of this posting. The 2 testing and infusion days are just long days with lots of waiting. The drive home on day 3 is okay. Extreme fatigue begins early on day 4 and lasts thru day 9. Moderate nausea also began late in day 4 and continued thru day 8. I have yet to actually vomit. I did not take the Zofran for cycle 2. It made little difference. My appetite has be zero from day 2 to day 9. Constipation has been significant and uncomfortable from day 1 thru day 10. Coughing and coughing up a lot of junk was significant in cycle 1 for days 4 thru 7. I was also having frequent moderate nose bleeds. There was always blood when I blew my nose. The coughing and nasal bleeding decreased significantly in cycle 2. For both cycles everything significantly improved during day 10 and it was all over by the end of day 11. Back to eating normally and resuming normal activity for the next 17 days. I had been told to expect post cycle 1 to be pretty bad and cycle 2 to not be significantly better, possibly worse. I rate my experience in total thru cycle 2 to not be significantly worse or better than what I was expecting. The nausea somewhat was better than expected, the fatigue was worse than expected. I am hopeful that reports I hear/read that these side effect start to significantly moderate with cycle 3, or at least by cycle 4 will apply to me. Meanwhile I'll just try to enjoy the coming 8 days.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    • OldFart
    • Experience with Lymphoplasmacytic Lymp...
    8 months ago
    OldFart's Avatar

    Chemo brain

    Side Effects

    Beginning after cycle 3 and increasing thru 4, I am finding this becoming a problem. Not able to find words. Giving a really stupid answer to a question I know the answer to. Putting things in weird places. Not able to multitask. I must do one task to completion. If I pause to do something else, I think or assume the first task was completed. I am fully aware of my XXX ups, immediately or shortly after. I am told this might worsen thru cycles 5 and 6, but with my R-B chemo it should clear up after 3 to 6 months.

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