Any survivors of follicular lymphoma out there

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Richsterr
Richsterr Member Posts: 34 Member
Hi
Any survivors of follicular lymphoma and for how long? I was diagnosed last april and have since been in remission. Do the doctors know if they can retreat the disease if it relapses? Real life experiences mean more than what statics say.

Thanks Richard
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  • hilde451
    hilde451 Member Posts: 229 Member
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    Survivor
    My name is Hilde, I was diagnosed in 04 with Non-Hodgkins Lymphoma in 04, At wihich time I had Radiation and surgery. I went into remission for almost 5 years, one week away.
    I had to do chemo and more surgery in 09 and was diagnosed again with Follicular Non-Hodgkins Lymphoma stage 4. It was in my Bone marrow.
    But up to know I have been in remission. I go to tomorrow to find out my results from my ct scan. So hope you will get hope from this. There are survivors for this. People do survive. I just live one day at a time. Hope you have a wonderful Christmas.
  • JOesterwind
    JOesterwind Member Posts: 3
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    hilde451 said:

    Survivor
    My name is Hilde, I was diagnosed in 04 with Non-Hodgkins Lymphoma in 04, At wihich time I had Radiation and surgery. I went into remission for almost 5 years, one week away.
    I had to do chemo and more surgery in 09 and was diagnosed again with Follicular Non-Hodgkins Lymphoma stage 4. It was in my Bone marrow.
    But up to know I have been in remission. I go to tomorrow to find out my results from my ct scan. So hope you will get hope from this. There are survivors for this. People do survive. I just live one day at a time. Hope you have a wonderful Christmas.

    NHL Follicular Stage 4 Grade 1
    Hi, my name is Jim. I was diagnosed in May of this year. I also have it in my bone marrow. I have five boys between the ages of one and eight. I also take it one day at a time. I don't take life for granted. My relationship with the Lord Jesus is the only thing that brought me through the six months of chemo. It's been painful and difficult, but there's hope.

    Jim
  • allmost60
    allmost60 Member Posts: 3,178 Member
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    hilde451 said:

    Survivor
    My name is Hilde, I was diagnosed in 04 with Non-Hodgkins Lymphoma in 04, At wihich time I had Radiation and surgery. I went into remission for almost 5 years, one week away.
    I had to do chemo and more surgery in 09 and was diagnosed again with Follicular Non-Hodgkins Lymphoma stage 4. It was in my Bone marrow.
    But up to know I have been in remission. I go to tomorrow to find out my results from my ct scan. So hope you will get hope from this. There are survivors for this. People do survive. I just live one day at a time. Hope you have a wonderful Christmas.

    Hi Hilde,
    Please tell us what your scan results are when you find out. I will be thinking good positive thoughts for you and keeping you in my prayers. Fingers are crossed!
    Love...Sue (FNHL-2-3A-6/10)
  • Richsterr
    Richsterr Member Posts: 34 Member
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    allmost60 said:

    Hi Hilde,
    Please tell us what your scan results are when you find out. I will be thinking good positive thoughts for you and keeping you in my prayers. Fingers are crossed!
    Love...Sue (FNHL-2-3A-6/10)

    Sure will
    Sue
    I have had eight chemos so far. Most of my tumors are gone. Tomorrow Thursday I will find out the results of my scan. Will let you know. Since I have been off the chemo I feel great. How are you doing?"

    Rich
  • allmost60
    allmost60 Member Posts: 3,178 Member
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    Richsterr said:

    Sure will
    Sue
    I have had eight chemos so far. Most of my tumors are gone. Tomorrow Thursday I will find out the results of my scan. Will let you know. Since I have been off the chemo I feel great. How are you doing?"

    Rich

    Not too bad...
    Hi Rich,
    Thank you for asking. I'm doing ok..not too bad other than I'm extremely tired and find it difficult to do alot of things I was doing before chemo. I have one round left on Dec 14th and then go for a CT scan the following week. I hope to know before Christmas if I'm in remission. Good luck tomorrow on your scan results and I'll be keeping good positive thoughts that all will be well. Take care...Sue (FNHL-2-3A-6/10)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
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    Richsterr said:

    Sure will
    Sue
    I have had eight chemos so far. Most of my tumors are gone. Tomorrow Thursday I will find out the results of my scan. Will let you know. Since I have been off the chemo I feel great. How are you doing?"

    Rich

    Feeling good
    Rich,
    Glad you feel so great after chemo. I have been 2 months out and still working on getting back to 100%. Getting there a day at a time.I guess we are all different. John(FNHL-1-4A-5/10)
  • Richsterr
    Richsterr Member Posts: 34 Member
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    COBRA666 said:

    Feeling good
    Rich,
    Glad you feel so great after chemo. I have been 2 months out and still working on getting back to 100%. Getting there a day at a time.I guess we are all different. John(FNHL-1-4A-5/10)

    Me too
    John
    Yes I said I am feeling alot better than when I was in chemo but also I am a month out and not feeling 100 per cent either. I guess it takes time. I read about my disease and the more I read the more confused I have become. The oncologist at the Moffit Center in Tampa told me things different from my oncologist. Why cant I get a definite answer about anything? Does anybody really know?

    Richard
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
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    Richsterr said:

    Me too
    John
    Yes I said I am feeling alot better than when I was in chemo but also I am a month out and not feeling 100 per cent either. I guess it takes time. I read about my disease and the more I read the more confused I have become. The oncologist at the Moffit Center in Tampa told me things different from my oncologist. Why cant I get a definite answer about anything? Does anybody really know?

    Richard

    Answers
    Rich,
    Exactly what was the difference in what the 2 Drs. told you? I can say it is best to stay off the websites. Now that will really confuse you. Let us know. John(FNHL-1-4A-5/10)
  • Richsterr
    Richsterr Member Posts: 34 Member
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    COBRA666 said:

    Answers
    Rich,
    Exactly what was the difference in what the 2 Drs. told you? I can say it is best to stay off the websites. Now that will really confuse you. Let us know. John(FNHL-1-4A-5/10)

    Difference of opinion
    John
    Thanks for answering me. My oncologist says I should get a stem cell transplant while the oncologist at the Moffitt center it is not necessary now. My oncologist said that when I relapse it will be hard to go into remission. The oncologist at the Moffitt center said to wait and see what happens. Which do I believe? This is a never ending puzzle to me.

    Richard
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
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    Richsterr said:

    Difference of opinion
    John
    Thanks for answering me. My oncologist says I should get a stem cell transplant while the oncologist at the Moffitt center it is not necessary now. My oncologist said that when I relapse it will be hard to go into remission. The oncologist at the Moffitt center said to wait and see what happens. Which do I believe? This is a never ending puzzle to me.

    Richard

    Difference of Opinion
    Rich,
    I am sure others on here have heard several things as well. Heres what I understand. When we go into remission the first time no one knows how long it will last. It could last months or years or even forever. What we have is not considered cureable right now,but treatable. They can't entirely eradicate it as of yet because it is so slow growing and some of the cells are not even entirely formed. Some of those cells may flair back up again into the cancer cells. Nobody can predict when that may happen or really 100% that it will,but the chances are it will at some time. If it does flair up again there are so many options that can be taken to try and put it back in remission. My understanding is that today the 2nd remission will probably not last as long and it will probably come back again. When it does there are other options as well. Remember this is today and with the strides they say they are making with lymphoma by the time that comes to be there may be even greater medicines for what we have. I hope this makes sense. John 9FNHL-1-4A-5/10)
  • JoanieP
    JoanieP Member Posts: 573
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    Richsterr said:

    Difference of opinion
    John
    Thanks for answering me. My oncologist says I should get a stem cell transplant while the oncologist at the Moffitt center it is not necessary now. My oncologist said that when I relapse it will be hard to go into remission. The oncologist at the Moffitt center said to wait and see what happens. Which do I believe? This is a never ending puzzle to me.

    Richard

    Richard
    I wa diagnosed with Stage 3 FNHL in Jan 09. After Chop I was cancer free in June 09 and have been ever since. I also went to Moffit and I think you should trust them. I can't remembe the specialist there in lymphoma because of blonde, chemo , old brain but he told me my tumors were not big enough to consider a transplant. He ssid Rituxin gave me an 80% of it not returning for 7 to 9 years. My oncologist worked there and he sent me there for a second opinion. I am feeling well and thank God for each day that I can be around people and go to work and be normal.
  • vcaple
    vcaple Member Posts: 2 Member
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    Glad to hear you have been in remission so long ..that gives me hope. I have been diagnosed FL grade3 in Feb 2022. Watch and Wait till now..disease progression and starting on BR in 2weeks. Then plan is for maintenance if hit remission. I am still working full time. I work remote. Thoughts on maintaining job routine? I plan to take chemo days plus 4 days off(total of 6days) to recover. I am going to take intermittent short term disability with my company. Am I being Lofty or Unrealistic??

  • PKRW6019
    PKRW6019 Member Posts: 7 Member
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    Hi Richard,

    I was diagnosed with in February 2019. In 2020, my PET scan showed a huge improvement. Everything looked great till last year. When I saw my oncologist in November, I was very sick and he wanted me in the hospital that day(a Thursday). Due to scheduling issues with tests and procedures, I was hospitalized 3 days later, the Sunday before Thanksgiving. My low grade follicular lymphoma had transformed to an aggressive follicular lymphoma.

    My treatments have been R-CHOP. I was so scared, but they haven't been horrible. I have had an excellent response to them. I had my 5th treatment 11 days ago and my 6th and final treatment is on March 9. This last treatment was a little harder, more nausea and fatigue. I do miss my normal hair, not loving this crazy balding look. I will have another PET scan two weeks after my last treatment and another echocardiogram three months after my last treatment.

    I asked my oncologist what the plan will be should I come out of remission and what treatments I have lost. He told me if I come out, they will try one of two types of chemo. If I respond well, they will stop it and move forward with a stem cell transplant.

    My oncologist said he will see me every three months for the first two years and if we pass that, then every six months from there on out. He told me he doesn't want me to worry about coming out of remission. Haha, doesn't he know me yet?! I have decided that I will try to move on and put this behind me the best as I can...Current Me is done. I just want to enjoy my family, friends and fly out of my cage. This lymphoma is for Future Me to deal with another day.

    Best of luck to you!

    Paula

  • thebeckers6400
    thebeckers6400 Member Posts: 13 Member
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    Paula,

    How are you doing? You were scheduled for your 6th R-CHOP in March. Hopefully you are feeling better now, a month later. I’m still in treatment since diagnosis of FL in Oct 2022. My 8th G-CHOP (Gazyva) will be next Monday. I don’t know what to expect after the end of this last cycle.

    Hope you are doing well.

    Sara

  • PKRW6019
    PKRW6019 Member Posts: 7 Member
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    Hi Sara! Tomorrow will be 6 weeks since my last treatment. I had my PET scan at the end of March. I have had a complete response and they can't see any cancer cells now, so it was as good as it could get. I had a sense of euphoria after the last treatment and getting the PET scan results, but that has worn off some and I am settling back into my normal life. I feel better than I have in years and have a ton of energy. My hair is starting to grow back, so that is exciting.

    I hope your last treatment goes well and you get wonderful news after your PET scan. Let me know how you are doing.

    Paula

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,813 Member
    edited April 2023 #17
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    I will add a few general comments to this discussion as of today (April, 2023). Earlier pages of the thread are 13 or more years old.

    Follicular NHL is very prone to relapse, and relapse can be delayed a long time, as much as ten years or more in some individuals. According to the NIH and other authorities, relapse occurs in up to 20% of all patients who have earlier achieved complete remission (CR).

    Achievement of first-line (initial treatment) C.R. is very high; probably 80-90 %. When recurrence occurs, second-line therapies similarly also usually achieve CR again. The therapies used for second-line vary by staging, how long the patient was in CR, and other factors that your oncologist should review with you in detail. Use of Active Surveillance (A/S) in cases of recurrence is not uncommon, as is so-called Maintenance Therapy, with either Rituxan alone, or Rituxan with Bendamustine .

    Also very generally, diagnosis or relapse with Follicular NHL is seldom highly dangerous, although certainly upsetting to the individual involved. Survival for 20 years or more is very common, even after relapse. And most cases never relapse and in effect constitute what used to be called a 'cure.' The most dangerous possibility, although it is very rare, is for follicular to morph into an aggressive NHL, almost always Diffuse Large B. Hence, an experience with follicular warrants lifetime diligence and follow up.

    I recently entered Rituxan Maintenance after 12 years of CR for a Hodgkins-type of follicular. Relapse was diagnosed as Stage 3. My prognosis is clinically good. I am not anxious at all, actually. You must learn to view the situation as living with lymphoma, rather than dying from it.

    max

  • PKRW6019
    PKRW6019 Member Posts: 7 Member
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    My indolent follicular lymphoma transformed to a high grade follicular lymphoma last fall. Although I knew of transformation, I never thought it would happen to me. In remission now, I am better than when I was originally diagnosed in 2019.

    Paula

  • thebeckers6400
    thebeckers6400 Member Posts: 13 Member
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    Paula, I am glad you are better than in 2019. There have been great improvements with NHL in just the last few years and Gazyva, which I get instead of Rituxin, and has been showing even better longer term remission. But they still don’t seem to know why it can transform into higher grade forms later. My instinct is the Covid virus may be involved. Even though vaccinated, I got Covid in Nov 2021. Then in Oct 2022 I was diagnosed with FL NHL while being a perfectly healthy and active in exercise person. Max in his comments above said recurrence is 20% but I am wondering if it might be higher since the Covid epidemic? We don’t know much about what causes Lymphoma in the first place. It could be from viruses in our environment!

  • ShadyGuy
    ShadyGuy Member Posts: 907 Member
    edited April 2023 #20
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    I view all FNHL as a chronic (recurring) condition.

  • PKRW6019
    PKRW6019 Member Posts: 7 Member
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    I just hope I stay in a really long remission. I sure don't want to do this again. If it transforms once, is it more likely to transform again?

    My PET scan was so good last month, but every lymph nodes that pops up on my neck gives me anxiety. I'm sure with time I will get better, but I may need to be medicated. 😂