New to this group. introduction (and advice?)

going2survive
going2survive Member Posts: 4 Member
edited July 2022 in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hi Everyone,

I just joined this group today. I was researching my condition online and found this network.

I'll just give a brief introduction at this time.

I found out that I had NHL slow marginal zone b cell lymphoma. I was diagnosed by my cardiologist who was testing me for something else, saw this, and said I had some sort of cancer. I went the whole route with scans only to find out it was indeed lymphoma (at first I was told it was some other form of cancer until I got a biopsy). I was told that there was a mass on my lungs (one 5 centimeters on the right side of my lung) and one small one on my left lung (2 centimeters).

I didn't want to do the wait and see option. Instead, I decided instead to go for treatments. I went for infusions and was given rituximab. I did 4 treatments in a month (once a week).

Right now, I have to wait until the beginning of August. That is when I am scheduled for my next PET scan to see where things stand.

I am having extreme anxiety from all this (I only found out about this about 2 months ago). Now, I am having even worse anxiety waiting for the next PET Scan. I know this is probably a very normal way of feeling, but it's been difficult.

I wanted to know (if possible). Has anyone here had my type of lymphoma? Had my treatment? Also, what was the next step you took after you had the next PET scan after treatment (if the first round of treatment did not do anything?). FYI, I"ll be switching over to Sloan in August.

Any advice, detailed questions for me or anything you can come up with would be most appreciated. As I said, I just wanted to introduce myself and talk to people who are (or have been) in my situation. I know there are a lot of different lymphomas. I do know that it didn't spread and it is just in those two areas. I was also told that I don't have lung cancer.

Thanks in advance. I apologize if any of this was vague.

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #2

    g2s,

    Marginal Zone NHL is classed as nodal, extranodal (aka 'MALT'), and splenic. Did your oncologist specify which ? It sounds like nodal, but MALT is a possibility.

    It is correct that MZL is an indolent strain ('slow-moving'), and Rituxan is in many cases sufficient to control it. It is also pretty standard practice to administer a drug or set of drugs and then modify things if necessary. If the Rituxan is working well, the doc might continue with just Rituxan, or even simply monitor your situation without administering any drugs for a time (a practice known as 'active surveillance') . If the Rituxan has not accomplished much she might add additional drugs, change drugs, add radiation, or whatever she judges best.

    And, it is correct that lymphoma on or in a lung is not lung cancer -- a very good thing, since nearly all lymphomas tend to be much more manageable than most lung cancers.

  • going2survive
    going2survive Member Posts: 4 Member
    #3
    https://csn.cancer.org/discussion/comment/1698022#Comment_1698022

    Thank you SO much for your reply. Much appreciated. I have a lot of education to learn about my condition.

  • po18guy
    po18guy Member Posts: 1,505 Member
    #4

    Welcome! Knowledge is power. Study up on the sub-type that you are diagnosed with, so that you can make informed decisions when the time comes. "Indolent" is similar to some of the "chronic" lymphomas. The "chron" in chronic indicates time. Time to learn. Time to decide. Time for newer, more effective and less toxic treatments to come out of the pipeline. Advances in therapy are steady, and there is more hope now than ever. Here is a link to the information booklet provided by the Leukemia and Lymphoma Society. It is a very good start:

    https://www.lls.org/sites/default/files/2022-06/PS84_MZL_2022_FINAL.pdf

  • going2survive
    going2survive Member Posts: 4 Member
    #5
    https://csn.cancer.org/discussion/comment/1698027#Comment_1698027

    Thank you for replying. The booklet you recommended is very helpful. Much appreciated

  • po18guy
    po18guy Member Posts: 1,505 Member
    #6

    Secondly, never fear offending your doctor by seeking a second opinion. If possible, at a National Cancer Institute designated comprehensive cancer center. They perform research, employ the best and brightest, and have resources that local facilities often do not. In the US, you may find the nearest such center here: https://www.cancer.gov/research/infrastructure/cancer-centers/find

  • tgyphilly
    tgyphilly Member Posts: 49 Member
    #7

    Welcome to Lymphoma World, going2survive. Hopefully the Rituxan controls your marginal zone NHL adequately and you can learn to forget about it, or at least mostly forget about it, in between doctor visits.

    There is an art behind the psychology of waiting for the next PET/CT or CT scan, especially with these indolent lymphomas that can in effect be a chronic ailment. I'm not sure if I've mastered the art myself, other than I try as much as possible not to "borrow trouble" and get too far ahead of myself with worry and predictions. You know, cross the bridge only upon your arrival type stuff.

    I expect you'll be in good hands at MSK -- it is the best of the best. Good luck!!

  • going2survive
    going2survive Member Posts: 4 Member
    #8
    https://csn.cancer.org/discussion/comment/1698103#Comment_1698103

    Thank you for the encouraging words. It is good advice. I have been trying not to have this define me. I continue to educate myself and try to not overdo it. Keeping busy has helped a great deal. A work in progress.

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