Colon Malt Lymphoma

Mac2017
Mac2017 Member Posts: 4
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Has anyone had or have colon malt lymphoma?

I had diffuse large b-cell lymphoma in 2011.  8 RCHOP and was done.  2016 my oncologist requires me to go see a regular doctor to prepare me to leave the oncology team.

I see my new doctor and he says it is time for your first colonoscopy.

I get it done about three weeks ago and return to my oncologsit for my final visit 6 years after complete remission.

He agrees I am cured of NHL but they found MALT lymphoma on my polyps.

So I came in cured and went out with an incurable lymphoma.

I am getting CT scan and bone marrow work to stage.  He already told me I will be taking 4 rituxin treatments so he can see my response to the meds.

Anyone else have any histrory with this and what their doctors did?

Thanks to all for taking the time to answer.  By the way, I felt great until then and now I am having rampant hear burn.

Comments

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

    Mac,

    Welcome to this site. I hope it is helpful to you in your new battle.

    Lymphoma is very prone to morphing into new forms.  Not many have written about MALT here, but it is described as very indolent (slow moving, non-aggressive), and is usually well controlled for long, long periods.   Do not view this as a terminal development.  As you should be aware from your past history, Staging of lymphomas is less determinative of outcome than with most organ cancers.   Stage 4 is often as easily curable or managable as a Stage 1 or 2 level of disease.   You do not (apparantly, from the biopsy) have colon cancer: You have a strain of lymphoma taking up residence there.

    Rituxan is the mildest chemo-like drug out there (technically, it is not a chemo, but a monoclonal antibody).  Many here are on "maintenance" for long periods, or even life.  But it is (relatively) mild and usually effective.

    Please share as thing are learned. I hope our MALT writers will see your post and respond,

    max

  • Mac2017
    Mac2017 Member Posts: 4
    edited September 2017 #3
    Thanks!

    No issue with colon cancer or any colon lesions.  I chose to stay awake during the procedure and to my doctor, he said no visible issues and the pathology only revealed MALT.

  • lindary
    lindary Member Posts: 711 Member
    #4
    Rituxan maintenance

    I had R-Chop & RICE. The 'R' stands for Rituxan in both of the treatments. As Max saud it is not a chemo drug but it does help the drugs and white cells find cells with the C20 marker and destroy them. I am currently on Rituxan maintenance and will be having my last treatment in Oct. 

    I have a sister-n-law who was diagnosed with MALT about 4 or 5 years ago. I don't remember what treatment she had but she is doing fine now. 

    Good luck Mac.

  • Mac2017
    Mac2017 Member Posts: 4
    #5
    lindary said:

    Rituxan maintenance

    I had R-Chop & RICE. The 'R' stands for Rituxan in both of the treatments. As Max saud it is not a chemo drug but it does help the drugs and white cells find cells with the C20 marker and destroy them. I am currently on Rituxan maintenance and will be having my last treatment in Oct. 

    I have a sister-n-law who was diagnosed with MALT about 4 or 5 years ago. I don't remember what treatment she had but she is doing fine now. 

    Good luck Mac.

    High hemoglobin

    New problem.  I have high hemoglobin and I will have some blood drained to bring the levels to normal.  Various doctors ask me if I snore, have sleep apniea.  There will be tests for that too.  Seems like I am on moving to one blood malfunction after another.

  • Mac2017
    Mac2017 Member Posts: 4
    edited September 2017 #6
    Got results

    So, I got the results.  All good except for what the CT scan indicated potential lymph growth between my back and stomach.  The issue here is I moved and this is a new oncologist.  My previous oncologist warned me specifically that if I get a CT scan or ultrasound they would state that I  had this issue.  It seems that my lymph group in that area from NHL never shrunk after chemo but rather shriveled so they would always appear too large in any image scan.  Now I have to my new doc to talk to my old doc.  That will be interesting.  My new doc still wants a PT scan and I agree at this point.  Any thoughts when multiple docs get involved?

    Thanks for any tips!

     

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