Follicular NHL at age of 33

Hello everyone! My name is Monica and I was diagnosed with follicular NHL a month ago. I have stage 4 and my treatment is chemo (Rituxan) 6 times for 5 months every 3 weeks. I would like to hear from people who had or has it. How is your experience and feelings. I'm very positive and my faith keep me strong! I have different reasons to fight this and my major one is my family. I am a mother of three beautiful kids and I have a wonderful husband :) Any advice and comment will be greatly appreciate it! Thanks in advance :)
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Comments

  • allmost60
    allmost60 Member Posts: 3,178
    Welcome
    Hi Monica,
    I have FNHL-stage3 and had CVP-R chemo once every 21 days for 6 rounds. I finished in Dec. I'm now doing Maint Rituxan, every other month for the next 2 years. The chemo shrunk all of my tumors and the R-maint is suppose to keep things in check for ????...don't know how long. The hardest part of chemo for me was with the prednisone. Kept me awake, very aggitated, and hyper. My hair thinned, but I didn't lose it completely. My taste buds stayed the same and I didn't have problems with food tasting weird. Fatigue was an issue, but it has gotten better over time. You are alot younger..(I'm 60), so maybe you will feel better than I did. Just rest when you can during chemo and listen to your body. Ask for help and pace yourself when you have to do things on your own. You will do fine. Keep us informed on how things go for you. Best wishes...Sue
    (FNHL-2-3a-6/10)
  • Sinatra
    Sinatra Member Posts: 5
    Monica, thank goodness you
    Monica, thank goodness you have a mild form of lymphoma and it is just lymphoma and not some tumor in a vital organ. My understanding when I was diagnosed in September of 09 was, even though it is cancer and stage 4, since my grade was 2 or 3 it was not aggressive and the watch and wait with good monitoring was a plausable option. However in January of thie year it became agressive and went into large B cell lymphoma thereby necessitating chemo (R-Chop) 6 cycles over 18 weeks. Keep your DIET away from animal based protein and go with vegetables, stay physically fit, drink many liquids since they flush the poison (Rituxan) out of your system. Just a few things along with taking vitamins associated with limiting cancer cells life.
    I will start going to some support group meetings this week. YOu can pick up newsletters either in your doctors office or the hospital they are associated with that will give you where and when. This way you are in full discussion with other lymphoma patients.

    Don't be afraid and stay strong!
  • bluerose
    bluerose Member Posts: 1,104
    25 year survivor of NHL here
    Welcome to the site Monica. I too had the same NHL you have and here I am typing to you some 25 years later. We did not have Retuxin back when I was diagnosed but something worked cause I'm still here. lol. Had an autologus (my own marrow) bone marrow transplant after one recurrance only a year and a bit after diagnosis. It was the very beginning of stem cell transplants back then and in fact they only did bone marrow transplants for leukemia patients before they did my transplant, they had just extended transplants to lymphoma patients too - whew.

    I want to tell you that today is a whole new day in cancer treatment and many are being cured or like some like to say 'have long remissions'. Your attitude is great and with the goal of family and with your faith you are on your way to a long survival too, I just know it. A Mother's prayer to be allowed to be there as her children grow up I believe is one of the most powerful prayers there is so I encourage you to continue to pray for that and also if you know any prayer chains at churches around your area I would encourage you to call them and ask for you to be put on their prayer request list. The power of group prayer has definitely worked for me - in spades.

    All the best.

    Blessings,

    Bluerose
  • cookingirl
    cookingirl Member Posts: 183
    Follicular Lymphoma
    Hi Monica - you've heard from Sue and Bluerose, two VERY positive gals on this site who have helped me a lot this past year. Welcome, Sinatra.

    I'm 68, have FNHL, stage 4 also, Indolent B cell. Did watchful waiting for 9 months, then last June started CVP-R every 21 days. I shrank my abdominal tumor from 15cm to 9 cm - not enough. In November started a newer chemo, Treanda/Bendamustine with a high success rate and my Dr. also added R to it. It was a very difficult treatment for me and ended April 14. Shrank tumor to 3.8 cm but not yet in remission. Tomorrow, July 27, I start my first Rituxan alone maintenance treatment every two months.

    Your faith and positive attitude will be the two things that will see you through the future. I agree with Bluerose - I'm on dozens of church prayer lists and know that's why I'm still smiling and doing so well. God bless and keep in touch with this site - Fran in Florida
  • miss maggie
    miss maggie Member Posts: 929

    Follicular Lymphoma
    Hi Monica - you've heard from Sue and Bluerose, two VERY positive gals on this site who have helped me a lot this past year. Welcome, Sinatra.

    I'm 68, have FNHL, stage 4 also, Indolent B cell. Did watchful waiting for 9 months, then last June started CVP-R every 21 days. I shrank my abdominal tumor from 15cm to 9 cm - not enough. In November started a newer chemo, Treanda/Bendamustine with a high success rate and my Dr. also added R to it. It was a very difficult treatment for me and ended April 14. Shrank tumor to 3.8 cm but not yet in remission. Tomorrow, July 27, I start my first Rituxan alone maintenance treatment every two months.

    Your faith and positive attitude will be the two things that will see you through the future. I agree with Bluerose - I'm on dozens of church prayer lists and know that's why I'm still smiling and doing so well. God bless and keep in touch with this site - Fran in Florida

    Hello Fran
    Dear Fran,

    I often think about long ago when my husband wanted to move to Florida.
    Now that New York has been having the most horrible heat wave this summer, I
    often wonder about the poor souls living in Florida. How can you stand it???
    I often went to Flordia for vacation, and loved it. But, we went the best time of
    the year. Right now in New York, high temperature, humidity, and constant sun. I
    pray for some clouds. They say your blood thins out, is that true??

    I am sorry you are not yet in remission. I think the good news, from 15cm to 3.8cm
    is wonderful. Hopefully the Rituxan will erase the remainder.

    God Bless and Blessings to you. Maggie
  • allmost60
    allmost60 Member Posts: 3,178

    Follicular Lymphoma
    Hi Monica - you've heard from Sue and Bluerose, two VERY positive gals on this site who have helped me a lot this past year. Welcome, Sinatra.

    I'm 68, have FNHL, stage 4 also, Indolent B cell. Did watchful waiting for 9 months, then last June started CVP-R every 21 days. I shrank my abdominal tumor from 15cm to 9 cm - not enough. In November started a newer chemo, Treanda/Bendamustine with a high success rate and my Dr. also added R to it. It was a very difficult treatment for me and ended April 14. Shrank tumor to 3.8 cm but not yet in remission. Tomorrow, July 27, I start my first Rituxan alone maintenance treatment every two months.

    Your faith and positive attitude will be the two things that will see you through the future. I agree with Bluerose - I'm on dozens of church prayer lists and know that's why I'm still smiling and doing so well. God bless and keep in touch with this site - Fran in Florida

    Good luck Fran
    Hi Fran,
    Just wanted to drop in and see how your first Rituxan maint went today. Good, I hope. Mine is going well and I don't have another infusion until Aug 22. Every other month isn't so bad. I'm still on vacation, but I'll be checking in to see how everyone is doing. For some reason I can't send private E-mail from my laptop up here at the cottage, but I can get on CSN and other internet sites. Weird, but it's probably something I'm doing wrong. You take care Fran...Love, Sue (FNHL-2-3A-6/10)
  • Davis285
    Davis285 Member Posts: 15
    allmost60 said:

    Welcome
    Hi Monica,
    I have FNHL-stage3 and had CVP-R chemo once every 21 days for 6 rounds. I finished in Dec. I'm now doing Maint Rituxan, every other month for the next 2 years. The chemo shrunk all of my tumors and the R-maint is suppose to keep things in check for ????...don't know how long. The hardest part of chemo for me was with the prednisone. Kept me awake, very aggitated, and hyper. My hair thinned, but I didn't lose it completely. My taste buds stayed the same and I didn't have problems with food tasting weird. Fatigue was an issue, but it has gotten better over time. You are alot younger..(I'm 60), so maybe you will feel better than I did. Just rest when you can during chemo and listen to your body. Ask for help and pace yourself when you have to do things on your own. You will do fine. Keep us informed on how things go for you. Best wishes...Sue
    (FNHL-2-3a-6/10)

    Hello! I'm so happy to see
    Hello! I'm so happy to see many responses!! In my first chemo I had headache, I was very sleepy, bone pain, body pain but not nausea or vomit. My dr prescribe me prednisone which makes me eat a lot and I have gained 12 pounds. My taste feels weired but I havent lost my appetite. In my second chemo I had not side effects which I'm happy. I lost my hair and my appetite is still good. I'm resting and taking care of myself. I feel very active. How long did you take the prednisone?
  • Davis285
    Davis285 Member Posts: 15
    Sinatra said:

    Monica, thank goodness you
    Monica, thank goodness you have a mild form of lymphoma and it is just lymphoma and not some tumor in a vital organ. My understanding when I was diagnosed in September of 09 was, even though it is cancer and stage 4, since my grade was 2 or 3 it was not aggressive and the watch and wait with good monitoring was a plausable option. However in January of thie year it became agressive and went into large B cell lymphoma thereby necessitating chemo (R-Chop) 6 cycles over 18 weeks. Keep your DIET away from animal based protein and go with vegetables, stay physically fit, drink many liquids since they flush the poison (Rituxan) out of your system. Just a few things along with taking vitamins associated with limiting cancer cells life.
    I will start going to some support group meetings this week. YOu can pick up newsletters either in your doctors office or the hospital they are associated with that will give you where and when. This way you are in full discussion with other lymphoma patients.

    Don't be afraid and stay strong!

    Stay fit
    Hello! I like your recomendations. Thank you! Yesterday I went to do my zumba class and I was worry if I was taking energy of my body. I felt very good and with more energy :) I'm eating very well and drinking a lot of fluids. So far I'm feeling good.
  • Davis285
    Davis285 Member Posts: 15
    bluerose said:

    25 year survivor of NHL here
    Welcome to the site Monica. I too had the same NHL you have and here I am typing to you some 25 years later. We did not have Retuxin back when I was diagnosed but something worked cause I'm still here. lol. Had an autologus (my own marrow) bone marrow transplant after one recurrance only a year and a bit after diagnosis. It was the very beginning of stem cell transplants back then and in fact they only did bone marrow transplants for leukemia patients before they did my transplant, they had just extended transplants to lymphoma patients too - whew.

    I want to tell you that today is a whole new day in cancer treatment and many are being cured or like some like to say 'have long remissions'. Your attitude is great and with the goal of family and with your faith you are on your way to a long survival too, I just know it. A Mother's prayer to be allowed to be there as her children grow up I believe is one of the most powerful prayers there is so I encourage you to continue to pray for that and also if you know any prayer chains at churches around your area I would encourage you to call them and ask for you to be put on their prayer request list. The power of group prayer has definitely worked for me - in spades.

    All the best.

    Blessings,

    Bluerose

    The power of prayer!
    You keep my faith alive! Wonderful to know your story :) that's my goal, to be a survivor like you and many other! To live for my kids and my family. I see a dark cloud on top of me but is not big enough to see the rest of the sky shining of love from God! I do beleive in the power of praying and that is what keeps my faith strong. I have received so much love and care from my family and friends and they keep me going!
  • Davis285
    Davis285 Member Posts: 15
    bluerose said:

    25 year survivor of NHL here
    Welcome to the site Monica. I too had the same NHL you have and here I am typing to you some 25 years later. We did not have Retuxin back when I was diagnosed but something worked cause I'm still here. lol. Had an autologus (my own marrow) bone marrow transplant after one recurrance only a year and a bit after diagnosis. It was the very beginning of stem cell transplants back then and in fact they only did bone marrow transplants for leukemia patients before they did my transplant, they had just extended transplants to lymphoma patients too - whew.

    I want to tell you that today is a whole new day in cancer treatment and many are being cured or like some like to say 'have long remissions'. Your attitude is great and with the goal of family and with your faith you are on your way to a long survival too, I just know it. A Mother's prayer to be allowed to be there as her children grow up I believe is one of the most powerful prayers there is so I encourage you to continue to pray for that and also if you know any prayer chains at churches around your area I would encourage you to call them and ask for you to be put on their prayer request list. The power of group prayer has definitely worked for me - in spades.

    All the best.

    Blessings,

    Bluerose

    The power of prayer!
    You keep my faith alive! Wonderful to know your story :) that's my goal, to be a survivor like you and many other! To live for my kids and my family. I see a dark cloud on top of me but is not big enough to see the rest of the sky shining of love from God! I do beleive in the power of praying and that is what keeps my faith strong. I have received so much love and care from my family and friends and they keep me going!
  • Davis285
    Davis285 Member Posts: 15

    Follicular Lymphoma
    Hi Monica - you've heard from Sue and Bluerose, two VERY positive gals on this site who have helped me a lot this past year. Welcome, Sinatra.

    I'm 68, have FNHL, stage 4 also, Indolent B cell. Did watchful waiting for 9 months, then last June started CVP-R every 21 days. I shrank my abdominal tumor from 15cm to 9 cm - not enough. In November started a newer chemo, Treanda/Bendamustine with a high success rate and my Dr. also added R to it. It was a very difficult treatment for me and ended April 14. Shrank tumor to 3.8 cm but not yet in remission. Tomorrow, July 27, I start my first Rituxan alone maintenance treatment every two months.

    Your faith and positive attitude will be the two things that will see you through the future. I agree with Bluerose - I'm on dozens of church prayer lists and know that's why I'm still smiling and doing so well. God bless and keep in touch with this site - Fran in Florida

    Hello Fran! I think we have
    Hello Fran! I think we have a group of great women here! I am Thankful to share my experiences and my faith with you all! I'm happy to know that the masses had reduced significantly. We are all in the same boat!
  • Davis285
    Davis285 Member Posts: 15
    Davis285 said:

    Hello Fran! I think we have
    Hello Fran! I think we have a group of great women here! I am Thankful to share my experiences and my faith with you all! I'm happy to know that the masses had reduced significantly. We are all in the same boat!

    Thank you!
    Thank you very much for taking your time and writing me :) I FEEL CONNECTED!!! I'm so glad I'm not alone ;)
  • allmost60
    allmost60 Member Posts: 3,178
    Davis285 said:

    Hello! I'm so happy to see
    Hello! I'm so happy to see many responses!! In my first chemo I had headache, I was very sleepy, bone pain, body pain but not nausea or vomit. My dr prescribe me prednisone which makes me eat a lot and I have gained 12 pounds. My taste feels weired but I havent lost my appetite. In my second chemo I had not side effects which I'm happy. I lost my hair and my appetite is still good. I'm resting and taking care of myself. I feel very active. How long did you take the prednisone?

    Prednisone
    I would take 60mg the morning of chemo and then 60mg every day for the next 4 days..total of 5 days. Then it was cold turkey without anymore until my next treatment in 21 days. I did a total of 6 rounds of chemo, starting in Aug.2010 and ending in Dec 2010. The day after ending the 5 days of pred I would be very achey and sore, but within 2 to 3 days it leveled out. That nasty pred played hell with my sleeping and made me like a cat on a hot tin roof, but all in all it was do-able..but still hated it! My appetite didn't go crazy while on it, but tended to afterwards. I only gained 5 pounds during my 6 rounds of treatment. Glad to hear your doing well..keep us posted. Much love...Sue (FNHL-2-3A-6/10)
  • JoanieP
    JoanieP Member Posts: 573
    Davis285 said:

    Thank you!
    Thank you very much for taking your time and writing me :) I FEEL CONNECTED!!! I'm so glad I'm not alone ;)

    Welcome
    Sorry you are joining us under these circumstances but there are wonderful people on this site that have helped so many including me. I was dx in jan 2009 and began chemo in Mar, GONE in June and have been back to work since then(except summers) Going back to fifth graders next week and I feel very blessed. You have a great attitude and you know God is good and in control. You will get to the other side of this journey with lessons learned and living and loving every minute. Godd luck on your journey. Joanie
  • JoanieP
    JoanieP Member Posts: 573
    Davis285 said:

    Thank you!
    Thank you very much for taking your time and writing me :) I FEEL CONNECTED!!! I'm so glad I'm not alone ;)

    Sorry
    OOOPPS
  • JoanieP
    JoanieP Member Posts: 573
    Davis285 said:

    Thank you!
    Thank you very much for taking your time and writing me :) I FEEL CONNECTED!!! I'm so glad I'm not alone ;)

    Blonde,chemo old brain
    sorry
  • JoanieP
    JoanieP Member Posts: 573
    Davis285 said:

    Thank you!
    Thank you very much for taking your time and writing me :) I FEEL CONNECTED!!! I'm so glad I'm not alone ;)

    Welcome
    Pushed enter tooooo many times:)
  • bluerose
    bluerose Member Posts: 1,104
    A little story about 'the dark'
    I was moved to share this with you Davis. I was listening to the Sunday sermon on TV last weekend as I am not well enough to go to church physically so have found a good TV church to get my fix. lol.

    Anywho I was listening to a sermon about the light and the dark and the simple symbolism that the pastor used was pretty effective for me and thought it might be a good image for you to carry around too.

    The Pastor brought in a suitcase to demonstrate her point. She said that all that 'the dark' is is really the absence of light and that all you have to do to get rid of the dark is open the suitcase and light overtakes it. Light ALWAYS OVERTAKES THE DARK. ALWAYS. So when you are feeling that 'dark' feeling - open your mental 'suitcase' and it will be gone. Light is much more powerful than the dark - when the Pastor opened the suitcase there was no struggle, the dark had to leave and allow the light to take over.

    Simple analogy but it really stuck with me. Hope this helps if only for a bit.

    Take good care.

    Blessings,

    Bluerose
  • JoanieP
    JoanieP Member Posts: 573
    bluerose said:

    A little story about 'the dark'
    I was moved to share this with you Davis. I was listening to the Sunday sermon on TV last weekend as I am not well enough to go to church physically so have found a good TV church to get my fix. lol.

    Anywho I was listening to a sermon about the light and the dark and the simple symbolism that the pastor used was pretty effective for me and thought it might be a good image for you to carry around too.

    The Pastor brought in a suitcase to demonstrate her point. She said that all that 'the dark' is is really the absence of light and that all you have to do to get rid of the dark is open the suitcase and light overtakes it. Light ALWAYS OVERTAKES THE DARK. ALWAYS. So when you are feeling that 'dark' feeling - open your mental 'suitcase' and it will be gone. Light is much more powerful than the dark - when the Pastor opened the suitcase there was no struggle, the dark had to leave and allow the light to take over.

    Simple analogy but it really stuck with me. Hope this helps if only for a bit.

    Take good care.

    Blessings,

    Bluerose

    Love it
    Bluerose
    I love the story. It is so true isn't it. Thanks for sharing. You are an inspiration to many people.
  • bluerose
    bluerose Member Posts: 1,104
    JoanieP said:

    Love it
    Bluerose
    I love the story. It is so true isn't it. Thanks for sharing. You are an inspiration to many people.

    Hey Joanie
    Long time no yap eh? lol. We all inspire each other, that's the beauty of this site, a place to gather and to realize that we are not alone and that's just so valuable in the fight against this 'thang'. Sometimes the simplest of story ideas can make a big difference, hope this simple one I relayed does that for someone out there.

    Hugs Joanie, hope you are doing well today.

    Blessings always,

    Bluerose