Any survivors of Non hodgkin's lymphoma slow growing stage 4?

2»

Comments

  • hopeful lady
    hopeful lady Member Posts: 36
    edited May 2016 #22
    gyrene72 said:

    Survivors of NHL
    Your comment triggered this reply.Hope it helps.
    I was diagnosed with Waldenstroms Macrogloblumenia a year and a half ago. Turns out this is a non curable, but treatable cancer that is caused by a singular cell being turned out of my spine that was, to put it mildly, screwed up. It lost its ability to die, and gained the ability to reproduce itself, incessantly! Supposed to be about 350 of these suckers in your bloodstream at any one time. I had 7,800 when it was discovered. We've been fighting this for a year and a half, and have gotten the problem cells, called IGMs down to 2,900. As I mentioned, this is not curable, and when, and if we get the cells back down to an acceptable range, then there will start a "maintenance" dosage of Rituxan for the rest of my life, however long that will be. I've talked to others on different sites who have been on "maintenance" dosages for better than 10 years, and are doing fine. Hopefully, by the time you, and I reach 10 years, if necessary, cures for all these cancers will be found.
    God go with you daily.
    Tom

    I also have Waldenstroms.....

    I also have Waldenstroms..... I do not find too many people with th8s rare form. Hope all 8s still going well. 

  • hopeful lady
    hopeful lady Member Posts: 36
    edited May 2016 #23
    usmcmama1 said:

    Husband , Bob, is 8 1/2 year

    Husband , Bob, is 8 1/2 year survivor.  Was stage 4 at diagnosis.  6 mos. of chemo with follow up of maintenance Rituxan.  Has a lot of other problems now, tho.  He will have CT"s Fri of abdomen, pelvis, neck and chest.  If all is clear we don't have to go back to onco for a whole year.  His specific Non-H lymphoma is lymphoplasmacytic lymphoma.  How are you and at what stage of the game?  Wish we had had this for support back then. 

    They call my cancer

    They call my cancer lymphoplasmactic lymphoma Waldenstroms. It is rare. If you are still posting I would be interested in your therapy and results! 

    I pray that all is well.l

  • hildegard
    hildegard Member Posts: 12
    #24
    Stage 4

    I have stage 4 Follicular Non hodgkins lymphoma, since 09, howeve it started in 2004, had surgery and 22 radiation treatments. Then I was ok for a while, it relapsed in 09 so did 8 rounds of chemo and did the Zevalin and have been in remission. Have however many other health problems , I worry sometimes but have been doing ok . Hope you are doing well and try to have faith. You will be ok, prayers go out to you. Hilde

  • Maemer
    Maemer Member Posts: 1
    edited November 2016 #25
    Also stage 4

    I also have stage 4, Indolent, B cell. A kidney stone attack on May 29, 2015 at 2:30 PM EST...weird how there are some numbers you can't forget....so now after 12 UTI's, 1 quarter size stone removal, 6 months of chemo and almost 6 months of immunotherapy....I'm starting to feel kinda "normal" again. Just the other day, my very best friend said, I don't even think of you having cancer anymore. I have to say I am blessed. My oncologist, whose been doing this for 30+ years, said, You have blah blah blah and I've never seen this before. Wow! If he hasn't seen it...who has. He said he had to label it stage 4 because it is 2 places and no where else...in my left sacrum and right femur. So i picked up the phone, called MD Anderson...had an appointment the very next week...all hotels which are reasonably priced say around $120/night...have shuttles to Anderson 24/7. Long story short..same diagnosis...so I came back home...did 3 months chemo...back to Houston for their scans..scans here..the PET/CT...CT is Not a diagnostic CT..so I went there...scan were clear...thank God. Feb., 2016, I went to radiolologist to see if she could get rid of hip pain...another PET here...and she said that she couldn't radiate what's not there...no cancer...im having my immunotherapy , Rituxin, every 2 months for 2 years....how long will this remission last? Only God knows. I am truly blessed.

  • donV2
    donV2 Member Posts: 3
    #26
    NHL Survivors?

    Same Stage 4 cancer...I did Bendamustine HCl and Rituzimab treatment...1 year cancer free...My neighbor is 10 years cancer free...He's 88 years old and can run circles around me!   Ye Ha!

Discussion Boards