Anyone ever had follicular lymphoma?

2»

Comments

  • JoanieP
    JoanieP Member Posts: 573

    cold
    Joanie, do you feel cold even though the temp is 70*?? my wife is constantly cold then hot,, but mostly cold on this round 3 of cancer.. and she s really getting tired of all of it.. but i think we will be able to convince her to keep up the battle with this new drug treanda.. but we both believe GOD wll only give you what you can handle.. Our faith is very much in GOD her spirits are high.. but she does get those down times. not being able to afford to go places doesnt help that any..
    I have found family have a tendicy to forget you may be still sick even though you re in remission.. they manage to see you on you good days not the one were she s standing on her head in the b-room or totally wore out from trying to do a little work around the house..
    stayin away from public places i really believe helps keeps you from getting nasty infections..
    We ve found people with cancer really biulds bonds with each other, we built some good bonds with some patients at Jewish hospital.. have a good day caregiver..

    Yes
    Hi caregiver.
    I was freezing. I always watched T.V with a blanket over my nose and I could not get warm. I saw today that they are in the 3rd clinical trial of a vaccine for NHL and about to talk to the FDA. That is great news. If your wife wants my phone # I will be glad to help her by talking over how she feels. My work email address is [email protected] and I will send you my phone #. I started a support group in my church and would be glad to offer her support. I believe we get more than we can handle alone, but with God's strength anythibng is possible. Keep the faith joanie
  • caregiver1829
    caregiver1829 Member Posts: 51
    allmost60 said:

    Welcome Loria_46
    I have Follicular NHL stage3>(no bone involvement)grade2-typeA>(non symptomatic)slow growth indolent- diagnosed in June 2010. I had a bone marrow biopsy to finish out staging of my cancer and with in a month of finishing all testing I started 6 rounds of chemo,
    R-CVP. If you click on my picture it will take you to my "about me" page which tells in detail what my cancer journey has consisted of. You can also view pictures in my expression page by clicking on expressions while at my about me page. In time(after you get the initial cancer diagnosis shock period behind you) you might want to fill out the "about me" page to give people a better idea of what you are dealing with. I am so sorry you are here, but you will find this a great place to come for comfort and guidance. We have many people here with Follicular NHL who are more than happy to answer questions and be your friend. Many others with different sub types of Lymphoma are here to help also. It's just a wonderful group of caring loving people to reach out to.
    Best wishes...Sue (age 61)

    hello!!
    I had already started a piece,but i had search request and i think i lost it so it may show up twice..
    It so nice to have folks like you to talk to and find out the problem your having is not so unusal after all..
    The advice you give is so considerate and usually points us in the right direction..
    hows your status on your cancer?? talk more later caregiver,,
  • miss maggie
    miss maggie Member Posts: 929
    JoanieP said:

    I had it.
    Hi I was diagnosed in Jan 2009 with Follicular NHL stage 3 I had no bone marrow test which my second Onc wished I had had before Chemo. I changed Drs. midstream. I had chemo(6) CHOP and 2 years of Rituxin. I am feeling wonderful, and feel blessed every day. Every day is precious. I feel great and have been in remission since June 2009. I wish you great results. Having great faith, great family, great friends and a positive attitude have brought me this far.

    God Bless
    Dear Joanie,

    I am beyond happy to hear how wonderful you are feeling. There is light at the end
    of the dark tunnel. I am in remission also, but I have to admit I do worry sometimes
    if things might change. Not too often.

    Our friend Sue will be starting her second year of Rituxan. She seems to be during very
    well with the treatment. Hopefully her results will be positive also.

    If you don't mind me asking? How did you get away with not having a BMB??? LOL
    And how did the doctor's stage you without the BMB? Very interesting. I do agree, it
    is not a pleasant procedure. My right hip has not been the same.

    All my prayers for continued blessings. Love Maggie
  • shelbymae
    shelbymae Member Posts: 8
    allmost60 said:

    Welcome Loria_46
    I have Follicular NHL stage3>(no bone involvement)grade2-typeA>(non symptomatic)slow growth indolent- diagnosed in June 2010. I had a bone marrow biopsy to finish out staging of my cancer and with in a month of finishing all testing I started 6 rounds of chemo,
    R-CVP. If you click on my picture it will take you to my "about me" page which tells in detail what my cancer journey has consisted of. You can also view pictures in my expression page by clicking on expressions while at my about me page. In time(after you get the initial cancer diagnosis shock period behind you) you might want to fill out the "about me" page to give people a better idea of what you are dealing with. I am so sorry you are here, but you will find this a great place to come for comfort and guidance. We have many people here with Follicular NHL who are more than happy to answer questions and be your friend. Many others with different sub types of Lymphoma are here to help also. It's just a wonderful group of caring loving people to reach out to.
    Best wishes...Sue (age 61)

    how are you?
    Sue just checking to see how you are doing...haven't heard anything in awhile.
    hope you are doing well.
    Shelbymae
  • JoanieP
    JoanieP Member Posts: 573

    God Bless
    Dear Joanie,

    I am beyond happy to hear how wonderful you are feeling. There is light at the end
    of the dark tunnel. I am in remission also, but I have to admit I do worry sometimes
    if things might change. Not too often.

    Our friend Sue will be starting her second year of Rituxan. She seems to be during very
    well with the treatment. Hopefully her results will be positive also.

    If you don't mind me asking? How did you get away with not having a BMB??? LOL
    And how did the doctor's stage you without the BMB? Very interesting. I do agree, it
    is not a pleasant procedure. My right hip has not been the same.

    All my prayers for continued blessings. Love Maggie

    Maggie
    HI Maggie,
    I went to a doctor and he didn't even suggest it. I did not like him at all and switched Drs. The one I have had ever since could not believe I was not given the bone marrow test. By then I had already had chemo. I usually feel great but my regular Dr put me on Crestor 3x a week, smallest dose. I have taken many statins and I can't becasue I get really achy the third week on them. I am off them now and I have been really achy for 4 days. If it is not better by Monday I am calling the Dr. Thank you for you nice note. I have not been posting much. I am so busy with my fifth grade class and tired when I get home. Take care and God bless you Maggie. You are such a bright light on this site.
  • catwink22
    catwink22 Member Posts: 281

    Watch and Wait for ???
    I wish I understood what oncologists are watching for? and waiting for what? wait for a mass or tumor to get a certain size? Is there better/longer remission if a person waits for more cancer to appear?

    mine was NHL Stage IV B-Cell indolent(slow growing). 3 small masses were pulling the skin down on my left jawline. all the lymph nodes were surgically removed which provided valuable data for the oncologist to decide how to treat my NHL. I was told it didn't matter if it was Stage III or IV (includes spleen) the treatment was the same. Rituxan and Treanda. Reached remission after 4 monthly treatments. I've been in remission for 1.5 years now and feeling good.

    Keep us posted and let us know how you're doing.
    Janelle

    Watch & Wait
    Hi Janelle,

    I was diagnosed with stage 3, grade 2 Follicular NHL in Aug 2008. I did watch & wait for approximately 9 months.

    FNHL is very slow growing so sometimes watch & wait is used to monitor the pace and progression of the disease.

    It is also said that early stages treated too soon are less responsive to treatment.

    Personally I was thankful for that window of time to come to terms with my diagnosis and research my options for treatment.

    I started two years of Rituxan in 2009, finished my last one in Nov and am currently NED (No Evidence of Disease). Waiting for my next scan in April to re-confirm.

    This is definitely NOT an option if the NHL has turned aggressive or shows a marked increased in it's progression.

    Wishing you continued good health!
    Cat
  • Dsgranni
    Dsgranni Member Posts: 9

    Has anyone had Follicular NHL?
    Hi Loria - I've had indolent, follicular NHL, stage 4 bone marrow involvement since August, 2009. Priimary site in an abdominal tumor - did watchful waiting for 9 months, then a year of CFP-R and Treanda-R chemos. IF you haven't seen a good Oncologist by now, that should be your first step. On my first visit, my wonderful Dr. ordered a bone marrow test to find the stage. My local office of 9 oncologists is affilated with a major cancer research hospital and center just two hours away. I've been there at his suggestion for second opinions 5 times.

    You'll meet many wonderful people on this site - Joanie, Sue, John were all here to great me when I first began my journey and they, along with many others, will be here for you as well. Our cancer is never curable but hopefully it will go into remission between treatments and you'll get your life back again for months. That's where I am now as I do a 2 year Rituxan treatment every other month with no side effects thus far. Joanie's right - faith, friends and family will make this possible for you. Prayers for your getting the right answers soon - keep in touch. Fondly, Fran in Florida

    Hello
    I was trying to comment and lost my page ? ! Will try again . . . I was just diagnosed with stage 3, low grade follicular lymphoma with a clean bone marrow. Evidently, my course of treatment will be Rituxan exclusively, at least at this point. Research on this treatment has been frightening in itself. Any advice about this infusion drug?
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,725 Member
    Dsgranni said:

    Hello
    I was trying to comment and lost my page ? ! Will try again . . . I was just diagnosed with stage 3, low grade follicular lymphoma with a clean bone marrow. Evidently, my course of treatment will be Rituxan exclusively, at least at this point. Research on this treatment has been frightening in itself. Any advice about this infusion drug?

    How are You ?

    Dsgranni,

    Have not heard from you in some time. Are you doing OK ?

    max
    .