• Relapse of follicular lymphoma

    Asked by TinaJacques on Thursday, January 17, 2013

    Relapse of follicular lymphoma

    I was wondering how quickly some of you follicular lymphoma patients out there relapsed after your first remission, and if any of you ever relapsed DURING Rituxan maintenance treatment? (I was treated with 6 cycles of R-CVP, and I'm in the maintenance phase now)

    My doctors have not been able to give me any indication of how long I will remain in remission because it varies so much from person to person, but I'm so OCD that I felt like conducting my own research. I've also been experiencing some old familiar symptoms.

    If you had a remission length of 2 months or 20 years, I want to hear your story!

    Thank you xoxoxox

    7 Answers from the Community

    7 answers
    • Harry's Avatar

      I don't have follicular lymphoma, but Waldenstrom's is also an indolent B-cell lymphoma. My WM transformed into Diffuse Large B-cell lymphoma after about a year and a half. I'm getting treatment for this right now. The thing is, the docs aren't kidding when they say that everyone is different. Whatever happens to you, it won't be the same as what happens to me. The best you can do is get those regular check-ups and hope things stay clear.

      over 5 years ago
    • Schlegel's Avatar

      My first line was R-CHOP. I had a nine month remission. Then I was in a clinical trial and got Zevalin and Velcade (always Rituxan). I had a 34 month remission with that. Then I had two treatments of Bendamustine, stopped it because of extreme fatigue during the time when I do seasonal work. I then got four weeks of Rituxan followed by quarterly Rituxan ending this past July. My current remission is now 29 months thus far.
      The good thing about follicular lymphoma is that you do not need to rush into treatment. If you have small tumors, and they are not causing problems, you can wait months, sometimes years, to get treatment.

      over 5 years ago
    • TinaJacques' Avatar

      Thank you both for your answers!

      Schlegel: In my case they did kinda rush me into treatment because my spleen was enlarged, my bone marrow was involved, and I had a 13cm tumor that was starting to wrap itself around my aorta.

      over 5 years ago
    • Gailmarie7's Avatar

      I did extensive research myself when I was first diagnosed. What kind of NHL do you have, you know there are 66-72 different kinds, sub-groups??? Yeah, THAT many! On top of that...everyone IS different. I do not think it is possible to predict at all. Me...I had Rituxan only, for two years, maybe 2 1/2, now in remission. Will go to Oncologist every three months, and, unless somethibng changes, will have another PET scan in a year...I was never sick, the lump under my arm found by accident during routine yearly pohysical, I had immediate treatment as I also had enlarged spleen and small bone marrow involvement, less than 5%. I am just happy no more treatments for a while, I never had any side effects, anyway, but didn't like having to scheudle my life around the treatments. You just have to push the worry to your back of your mind...and think Healthy thoughts! XXX OOO

      over 5 years ago
    • cjnana's Avatar

      I feel the EXACT same way. I am entering my second year of remission, and only have one more round of maitenance chemo. Some people remember every detail of being diagnosed and the following days. Others, like me, remember bits and pieces. One thing I do remember is being told that this is one cancer that is highly likely to recurr. So naturally, my OCD side kicks in and wants a specific date! (HA HA) I have learned to cherish every moment. Unfortunately, just because you have cancer, or having maintenance chemo, or are in remission..............the rest of life goes on. The good, bad, ugly, and devastating. Having to deal with my share (and someone else's I think, still looking for him/her) has taught me that it is truly important to CELEBRATE AND CHERISH the good days. Even the mediocre, not much going on days have become awesome to me. I have been experiencing the drenching night sweats, and the first thought that rolls through your mind is, UH OH. I keep a very close and open relationship with my doc and nurses, so that I can feel comfortable calling and asking about anything. They have all been very accepting and supportive of my OCD tendencies. It is very frustrating to not have a more accurate or close prediction of the chance and timing of a relapse. But maybe knowing that there are others out there that feel the same way will help. Stay positive and live everyday to the fullest. You deserve it!

      over 5 years ago
    • Schlegel's Avatar

      Rituxan has changed everything, and we have little indication of how long a remission will be or how long we will survive. I was diagnosed eight years ago and after asking, I was told I had up to ten years. I now expect to have ten more years. Remissions are supposed to get shorter and shorter, but mine have gone the other way. After R-CHOP, I had a nine month remission. After a clinical trial of Zevalin and Velcade, I had a 34 month remission. Then after two treatments of Bendamustine (which I stopped because I was missing a whole week of work due to fatigue) and maintenance Rituxan which ended July 2012, I have been in remission for 35 months and still in remission. I am 68 so I now expect a normal lifespan.

      about 5 years ago
    • comedymann's Avatar

      I have been in remission for 5 1/2 years now and starting to see some signs. But maybe everything will be good. I see the oncologist in a week.

      about 2 years ago

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