Any survivors of follicular lymphoma out there

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  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #22
    https://csn.cancer.org/discussion/comment/1705429#Comment_1705429

    I agree 100 %

  • thebeckers6400
    thebeckers6400 Member Posts: 13 Member
    #23
    https://csn.cancer.org/discussion/comment/1705334#Comment_1705334
    https://csn.cancer.org/discussion/comment/1705334#Comment_1705334

    Hi Max, How is your maintenance going? I’m glad for you that your relapse isn’t requiring chemo again. After 8 G-CHOP chemo’s my doctor is calling my bulky FL NHL partial remission. It’s because even though I have low 2.7 metabolic activity on the final PET scan, the 3 masses in my abdomen are still 7.5cm, 7cm and 5cm long respectively. He wants me to start Gazyva maintenance every 2 months for 2 years. I have a couple other lingering issues also, leg swelling and pleural effusion around one lung. Trying to be positive but uncertain what the stubborn remaining masses mean and how to get to complete remission.

  • thebeckers6400
    thebeckers6400 Member Posts: 13 Member
    #24

    Hi Paula,

    I hope you continue to feel well and able to do all the things you enjoy. As I mentioned to Max above, I’m not sure if I can celebrate yet because even though I completed 8 G-CHOP chemo’s my doctor wants me to begin monoclonal antibody maintenance right away. He’s calling my situation partial remission. I would have thought a person would be in complete remission or not. I will do as he advises and hope the next 2 years of maintenance will ensure long term remission. Keep looking forward to a beautiful life!

  • TanzirIslamBritto
    TanzirIslamBritto Member Posts: 2 Member
    #25

    Hi, I am Tanzir Islam Britto; I had NHL in my childhood, back in 1998. Medical science was not advanced as today. But after a long battle, I was in remission for seven years. Then I relapsed. Went through chemotherapy and a few sessions of radiotherapy. Then in 2009, I had my 3rd relapse. That time it was scary. I was studying for my MBBS. I had to take a break and again... I had countless injections; cannula marks caused my Catheter to get infected every time. Without CV line access, I was pricked by a needle like a .....


    Dont worry. Keep fighting. I fought with my cancer when I was eight years old. It opened my eyes. I see life from a different angle now. Cause I know how precious this life is. I don't worry. I fight...

    You will and can.

  • thebeckers6400
    thebeckers6400 Member Posts: 13 Member
    #26
    https://csn.cancer.org/discussion/comment/1706945#Comment_1706945

    Thanks for your story Tanzir. NHL in many cases has become a chronic disease to keep watch on over the years. Hopefully you stay in remission. I began antibody maintenance in June but have since gotten 2nd and 3rd opinions that this is not a good idea because it puts the body in a state of reduced immunity and subject to infections such as Covid which more dangerous in the short run. I am going to stop the maintenance as advised by 2 different NHL specialists including John Hopkins University Hospital. Unfortunately, I now have recurring pleural effusions which will require surgery to close the leak.

    Has anyone else encountered this side effect after finishing chemo? A lot of fluid accumulates around my right lung and needs to be drained by Thoracentisis.

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