Melodyj

Hi just new to this website. I'm reading some of the posts and I am a Non-Hodgkin's follicular lymphoma patients I am in remission one year and still undergoing maintenance treatments until next November 2017. My lymphoma what stage 3A as in no symptoms however my symptoms mimic menopause and fibromyalgia so I was not aware of additional symptoms. I had a gallbladder operation in 2014 which produced a hernia and a CT scan which is when I found the lymphoma I know I'm in remission but it weighs heavily on my mind will the lymphoma come back I know I've only got one day at a time and am grateful for the remission. Is however still kind of a heavy burden to carry anyone else out there in remission with Non-Hodgkin's follicular lymphoma would love to hear from you I am 60 years old two children five grandchildren and single.

21 Replies

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  • Hi Melodyj, welcome to NHL Friends ! I am nearly 62 and was diagnosed with FL in 2014. I have not so far had treatment other than the initial surgery to biopsy the first node. I'm on watch and wait. Sometimes it can be tough but most of the time I stay positive by exercising (walking,swimming) daily and eating a healthy diet. I know when I do this that I'm giving myself the best possible chance of staying in remission for a longer time. Looking after myself is the best antidote to nervousness about relapse that I can find. Getting out and about and talking to other people also grounds me as it shows me that my situation is better than many others and I still have a lot to be thankful for. Other people might have different ways of living with it, but that's the best strategy I have found so far.

  • Hi Melody

    In November 2011, at the age of 65, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 3 years she progressed after R-CHOP (6 cycles), bendamustine/rituximab (6 cycles), and Ibrutinib (12 months). She took Idelalisib/rituximab as her fourth treatment. It worked great for 14 months then a PET scan showed she progressed again. She is now in an NIH CAR-T trial and has been in complete remission for 10 months. Current CAR-T clinical trial data shows that once a follicular lymphoma patient achieves a complete remission they stay in complete remission.

  • That's wonderful news. I hope she stays in remission for good!

  • This is so true, I too have bombarded my body with vegetables and healthy eating, no sugar. I try to get out and snowshoe or walk. Enjoy my grand babies all I can 😊

  • Hello Melody

    I am seventy five years old and also have folllicular lymphoma stage three and also in remission since July .

    Went thru six months of Rituxan and bendamustine . Followed by Retuxan x 1every three months.

    I strongly believe in diet & exercise and also enjoying remission.

    Stay strong & enjoy life .

  • I was diagnosed in July 2015 with LGFL, stage one grade one, no treatment just watch and wait every three months at oncologists...

    Yes although I have no symptoms the burden mentally is a difficult one.

    I get through every day pretending I have nothing...telling my body that, eating healthy

    (trying to) exercise (trying to LOL) and staying in the moment.

  • I had my initial node removed . was on my neck.

  • I feel your pain I am in remission too did treatment and mtce. Yes one keeps wondering if it will come back. On Tuesday 1/17 I will see the doctor to know what next. Age 64

  • Hi I can relate to you! I have marginal zone lymphoma and I had my spleen out my gallbladder and a hernia all in same operation. I would be none the wiser about symptoms as they were mimicking menopause too. I just got fed up of menopause and I saw my doctor for some relief of the symptoms well after a great deal of bloodvwork turned out I had lymphoma. Shocked. I had my operation and have been on watch and wait now three years in September. The fear of the unknown is real. I try to keep busy with painting knitting and gardening . You just can't dwell on this as scary as it is. I've learned from this site there are great success stories. Good results from therapies etc. All we can do is not stress and pray our disease will stay away as long as possible. Good luck to you ! I have my yearly checkup next month 👍 Praying for more watch and wait

  • I do hope you have only good news next month!

  • I'm 47 yrs old, new to site as well. I'm a mother of 3. My B Cell follicular Lymphoma went undiagnosed for 2 yrs. Surgeons and doctors performed a hysterectomy, and hernia surgery twice. Last December I became very ill. I was in & out of the hospital 6-8 times via ambulance.... I'm 11 yrs post gastric by-pass so everyone continued to blame my symptoms on that. They blamed my weight loss on a past surgery, even though it was a yr prior. Finally a gastri surgeon put me under and laid all my organs on the table and found the Lymphoma or lymph system affected on my pulmonary branch & aortic artery. I was too diagnosed STAGE 3B, but my oncologist was only going to "watch and wait".... we transferred my care to a new facility the next day, and were seen w/in 10 days.... the fist doctor only gave me 5 yrs. I went through chemo & immuno-therapy & am too in remission. Yes, I understand the heavy burden you speak of. Last week I received lab results that needed further testing. PET SCAN etc. It wasn't the thought that I had cancer again, because we are never free.... but it's the thought of having to go through treatment... will I loose my hair this time? You aren't alone, there are so many of us out here. Take care. Hug your grandkids. Enjoy life. And know I'm not just saying that to make you feel better... I empathize with you. I truly hear you.

  • Hi I fear the day I have to have treatment too and maybe it won't be for a long time. When I was diagnosed I feared having chemo, after reading lots of stories on here I realize we r all different but most people are doing ok. I watched my dad go through chemo and radiation it just wasn't very nice for him, he was very sick, however he did have aggressive chemo. I really like this site to bounce our likenesses and experiences off each other 😊

  • Thanks thanks for sharing your story. I understand the thoughts wondering if the next test will show more cancer. Or how long I can stay in remission. Or will another type of lymphoma show up. While it doesn't do any good to worry it's always there in the back of your mind. Or some days you just don't feel good and you wonder all this and that a new symptom.. but most days I just go about my business do my job is it my kids play with my grandkids. I'm every 8 weeks go in for my maintenance rituximab. God bless take care and be well Melody

  • Hi Vicki here I've just started my first treatment for lymthoma st 3 & B.xox

  • Hi Melodyj,

    I am happy to hear you are in remission but saddened to hear that it also plays heavily on your mind.

    In the past 8 years, I have experienced Follicular Lymphoma twice and Aggressive Diffuse Large B Cell Lymphoma once; both types being Stage 4, Grade 3. I finished chemo for my third experience in November, 2016. I am currently in remission.

    Through these three experiences, I have learned to put any worry or fear out of my mind. I resort to positive affirmations that I will overcome whatever obstacles / relapses that cross my path. I continue to live my life giving very little thought to the possibility of relapse knowing that when the day comes, I will face it head on.

    Might I suggest that it may be beneficial to change your thought process about relapsing. I have found that positivity very often brings on success.

    I wish you well as you travel this road.

  • Thanks for sharing I know that most days I don't even think about the cancer or the fact that I could go out of remission. But still it does way in the back of my mind. I think I think more about it as I get closer to another treatment versus when I'm 2 weeks out from my every eight week treatment and then I don't really think about it much at all. I'm doing the best I can keep it as positive I can then moving forward one-footed time everyday. I get up every morning and go to work in fact have lost very little time from work because of my treatments or because of the lymphoma. I'm sorry you had to go through three different episodes and I hope that you stay in remission now for a long long long long long time. God bless be well Melody

  • Hi Melody. I was diagnosed with stage 3a follicular lymphoma in Sept 2015. I was 62 and I retired from a very stressful job. I am on Watch & wait too and it can be difficult but I feel fortunate that I have not required treatment. My oncologist did prescribe Xanax for anxiety and I have required it less as time goes by. I am making sure I get adequate sleep now that I don't have to go to work and I have drastically removed sugar from my diet, no longer eat red meat and try to eat alkaline foods and drink alkaline water. We are fortunate to be on Watch & wait and I hope soon they have a cure!

  • I went through Chemo for 6 months and am in remission and am now on a 2 year ( 1 year done) maintenance infusion with Rituxamob. I go every eight weeks. So far so good. I hope you continue to do well and I hope I stay in remission! God Bless ! Melody J

  • I am 75 years old and had same cancer as you. I am now 14 years clean. Live your life, do not let the fear rule you.

  • That's very good news to hear God bless you

  • Hi Melodyj... I'm 48 years old. I was diagnosed (finally) with fNHL in April 2015 after years (probably close to 20 years) of being misdiagnosed. A lump in my right arm was diagnosed as a "vascular lesion" in 2008 and I had many symptoms for years prior... the docs just couldn't get it right 😢. After a bone marrow biopsy and PET scan I was diagnosed 2a. They decided to do 20 rounds of radiation to potentially cure me. As my arm lump wasn't included in the PET scan (arms were above my head during the PET) I noticed after the 19th radiation treatment that the arm lump had almost disappeared. When I told the docs this they were mad at ME because I didn't tell them about it 😩 I didn't even think to as previous docs had told me it was a vascular lesion and I thought for sure the PET scan was done to the whole body (apparently not)... anyway- they decided to do another 10 radiation treatments to the arm lump... fast forward almost two years... the lumps are back but I actually feel better now than I have in years. I'm only doing alternative treatments - IV vitamin c with licorice root, IV chelation to detox toxins (I was extremely toxic with lead, styrene, gadolinium and mercury), IV curcumin, dandelion root tea, frankinsense essential oil, apricot seeds (b17), essiac tea, aloe Vera juice, alkaline diet, no red meat, Hyperthermia, RIFE machine, chi machine and have just started IV ozone therapy... I hope to stay watch and wait for a long time to come. I am relieved that at last that I know what I am fighting. I have regular massage and lymph drainage massage also. I wish you well in your journey and believe if we stay positive and live our lives well every day, everything will be OK 💗

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