Time frane

Good morning, I don't want to sound negative by asking this question but anyone that was on watch and wait, I'm wondering how quickly did you relapse if you did relapse. So if your bloodwork was good then 3 months later was it bad? Or did it show a gradual slide into relapsing? I guess what I'm getting to also is that I've mentioned before I don't get my bloodwork results all I've ever heard was your bloodwork is good. So I know now I should be proactive and get this printed off and try to understand the numbers. I have an appointment in a couple of weeks for my yearly checkup, so I'll be asking about this . Well I was just wondering if anyone has gone into relapse quickly or slowly. My marginal zone is indolent so does this mean I'd have a slow regression if it were to happen? So far so great I'd like to add. Living life and not dwelling on the negative, just curious. Thanks

26 Replies

  • I have nodal marginal zone. I don't know how long I've had it. I started showing noticeable symptoms in July and they got worse (swollen lymph nodes, stomach pain, fevers, night sweats, fatigue). I was diagnosed in October and started chemo in December. When I was diagnosed I was stage III. Monday/Tuesday I have my 4th cycle of Bendamustin and Rituxin. Thursday I'm having a CT scan of my pelvis region (that's were it spread to) to see how I'm doing. I feel so much better after the chemo started all the symptoms except for the fatigue is gone. I'm sure it's frustrating being on watch and wait.

  • Glad to hear your feeling better. The treatment seems to reverse symptoms rather nicely from what I've read on here, I think I've learned to worry a great deal less just reading and hearing these stories of your treatments on here thank you for sharing

  • I have been on watch and wait for 3 yrs-my blood work was good even with the diagnosis-that is why my family Dr didn't think I had follicular lymphoma until I had a biopsy to find that I did-

  • I have never received treatment and have been on Watch & Wait since September-015 for NH Indolent Follicular Lymphoma stage 3 A. The initial symptoms were fatigue, and an enlarged node was identified under my arm during a breast exam. Had a biopsy of the node which confirmed NHFL and the Pet confirmed stage 3. LDH is a lab bio marker for this disease. I have a CT every six months to monitor. I was told I might have profuse night sweats and fatigue if it got worse but could still be W&W for 20 years. I do keep my records of the labs and CTs but I've also tried to eat a more alkaline diet, stopped red meat, sleep 7 hours a night if possible and reduce stress.

  • Thank you, I have almost eliminated sugar from my diet, haven't given up the red meat but I am mostly chicken and fish and veggies not even a lot of carbs, I feel much better in my health. I've also started a walk/run and feel great from this addition to my routine. So your saying ifvut relapses the LDH will show that? I'm hoping for 20 years 😊

  • LDH is a biomarker but that alone would not deem treatment. How you are feeling and what would be revealed on CT and/or Pet. I have grossly reduced sugar too. Your exercise plan is great! I need to improve mine!

  • I was in remission from large diffuse B cell for only a few months when I started experiencing extreme fatigue, balance issues, facial,numbness, etc. I kept going to my local cancer center and all they would tell me was my blood work was fine. Finally I go so bad and felt they weren't listening so I went to my internist who sent me for a CAT scan-clear and then an MRI which showed tumor/lesions on my brain. The NHL had crossed the blood brain barrier into my central nervous system, CNS. I have since had 8 rounds of chemo to combat the lesions prior to an arduous stem cell transplant (Nov 2016). My advice is listen to your body , keep asking questions, and never give up!

  • Wow good to know glad you were persistent I am learning to listen to my body too, if I'm tired now I just stop and have a nap no more fighting it lol

  • I noticed my lump on my neck in April 2015 it was removed and diagnosed in July 2015 stage one grade one low-grade follicular lymphoma. I've been on Watch in weight since then no treatment I go to oncologist every three months she tells me my blood work is good I never think to ask what the numbers are also I Kinda a don't want to know I just want to know I'm OK and I could go on for another three months helps me to put it on the back burner of my life From what I read and what I see and what the doctor tells me this can go on for a very very long time God willing

  • Great attitude. The oncologist told me- looks great come back in five months. Actually I never want to go back.

  • I was on Watch and Wait for 4 1/2 years. I then had 4 infusions of Rituxan and I was in remission. I have blood work and see the oncologist every 3 months. So, far so good. I go again in April on the 21st. I get a print out of my blood work each time and it was recommended to keep for comparison. I have them in a binder along with my CT scan results.

  • That is so nice to hear! Gives me more optimism

  • someone i work with her dad had lgfl 20 years ago.... no treatment and is stil fine..

    he is 96

  • That's very inspiring

  • I'm still on watch and wait too. I know that the 'B symptoms ' are a red flag for progression - night sweats , more nodes etc. but like you, I try to think positive and worry as little as possible coming up to checkups. I see the oncologist every 3-6 months, depending on whether the node still in my neck (had one removed already for biopsy) is growing or shrinking. I have copies of all my blood tests - only because they are processed at a hospital closer to me than the one I attend and the results come back to my GP who gives me a printout. Interesting question though, and I look forward to reading the answers!

  • im not brave...if my oncologists says I'm good.....I just go on...don't wants to hear the itemizations of it because I'm chicken.

    its a mental thing with me.....

  • I understand that, we can over analyze stuff way to much, every hiccup we can google and scare ourselves but yet knowledge is power and helps us to see what we have coming at us... in the end I guess we do what's right for ourselves right? 😊

  • when I first got diagnosed I went to the Lymphoma society forum which was being held in new York and it was very educational.

  • That's an excellent thing to do, helps tremendously with the mental anguish and this is so important to the quality of life. Do go back again, and help others too.

  • I haven't been on watch and wait. I was stage IV and started R-Chop immediately .. so I hope you will do well and it can be avoided for treatment.

  • Hope your doing well judyhoneycomb! I'm hoping I stay on WW for a long time, hopefully you'll be in remission soon 😊

  • I make a list of questions for my Doctor's

  • I wonder the same thing Lalalulu. I try to stay positive and keep living a life, but I still think about the fact that I've had cancer (remission now) every day throughout the day. Is that common?

  • I think it is common for most of us, the thing is not to get all down on ourselves and try not to dwell on it. I just had a CT recently, I saw my GP and I sat and had a good chat with him, I had a somewhat anxious few months as I thought I could feel something in my neck and my chest was sore with some minor shortness of breath, this had me worried. Anyway everything came back clear. For the life of me I thought that my neck was going to show swollen lymph nodes. I left that office after he went over everything thinking I'm seriously going to put this cancer out of my mind and try to live like it doesn't exist. I seem to be worrying about nothing lol, seems I got off on a long speech here. We just must get up and face each day like a blessing, and go on living our lives as normal as we can 😊

  • Yes very normal

  • My chemo ended May 2013. Every 3 months followup blood and exam. This year every 4 months and yearly CT scan. Good blood work. Staying the same numbers or better.

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