Insight sought

tsam
tsam Member Posts: 3
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I'm doing research to assist my brother who has low grade, B cell, marginal zone type NHL. His is stage III, possibly IV. He has a bulky tumor in his abdomen and has received rituxan treatment but no chemo since he's asymptomatic. My questions:
- Anyone with experience with fludarabine, mitaxantrone & rituxan? Comments?
- Anyone with experience with zevalin? Comments?
- With large, bulky tumors, what's been most effective?
In advance, thank you so much for responding.

Ted

Comments

  • pumkin
    pumkin Member Posts: 6
    #2
    All good questions. I am surprised they did not do chemo with the rituxan as it has markedly better results according to my oncologist. I am a 3c stage and have been fighting since 1996. I have done 5 chemos 1 radiation and two monoclonal therapies. We have not used zevalin yet as it is Medicare approved, but not yet on the payment schedule. They expected Oct. Is this your brother's first round? I had a penpal that did chemo and rituxan in a clinical trial and he was stage 4 and has had 4 yrs. of clear scans. The lymphoma had spread to my lungs and the combo cleared my lungs, however, the abdominal tumors remain. I went to an ask the dr. event at the Wellness Center, but he had not yet treated anyone with zevalin. Have you tried to get info from the LRFA (sorry old name-but it should pull up on the computer) They have good info on treatments and trials regarding lymphoma. I hope I have helped some--sorry I don't have more info. I can tell you this to help--I was given 6 weeks to live and was in hospice care--that was 3 yrs ago. The rituxan has kept me alive and my oncologist says this are changing monthly. Good Luck. Pumkin
  • wallpa
    wallpa Member Posts: 22
    #3
    Hi Ted,

    I was diagnosed in Dec 2001 with follicular B-cell stage IV NHL.

    It sounds like your brother is now on watch and wait post-rituxan. This could be the best bet for now, if he is asymptomatic. Generally, unless something is in danger (vital organs, pain etc.) it's best to use the most mild treatments and work your way up to the more powerful chemo combinations. (Such as CHOP.)
    Rituxan is a very good starting point. Rituxan has been shown to be pretty good considering how mild the side effects are.

    I had large bulky tumors, and I would have followed this protocol if the largest tumor wasn't wrapped around my spine, causing excruciating pain, and threatening to paralyze me from the waist down.

    I had CHOP x 8 + Rituxan and 18 rounds of Radiation. (considered pretty big guns for indolent lymphoma.)

    I am now completely cancer-free, despite being diagnosed with lots of tumors. You may or may not be aware of this, but indolent (low grade) lymphoma is very very hard to get rid of permanently. Sometimes, if someone is diagnosed with stage 1, they can get rid of it permanently. Aggressive lymphoma is more dangerous when left untreated, but can be completely cured 50 percent of the time.

    Indolent lymphoma is a strange beast. It grows so slowly that it doesn't really hurt you for a long time. When diagnosed, people get all antsy and want treatment. The problem with indolent lymphoma is often that treating early (especially if the person was not stage I) will not prolong the person's survival time. It's best to save the treatment for when organs or extreme pain are involved.

    If he has large, bulky tumors that are causing problems CHOP+Rituxan seems to be the new gold standard.

    patty
  • railroad
    railroad Member Posts: 22
    #4
    My mom just started fludarabine and mitoxantrone and her nodes(cheek and behind the ear)are already shrinking after 1 course.She's set for at least 4 and maybe as many as 6 but she's not doing the rituxan.I don't know why.This is supposedly a less harsh chemo and this is her 1st ever chemo treatment.Diagnosed with low-grade follicular NHL last June(02').Best of luck to you and try to keep your spirits and energy up.
    Randy
  • iowagal56
    iowagal56 Member Posts: 3
    #5
    My husband received the zevalin therapy in December of 2003. His counts have dropped so very low and just got out of the hospital after getting pneumonia. He has had to have transfusions almost weekly. Has anyone had any experience with zevalin therapy and very low counts? He was diagnosed in 94 and different therapy and treatments since then. The "cure" has caused so many problems he now has heart failure and also had to have a pacemaker put in due to damage from the various chemos. any personal stories would be greatly appreciated. please email iowagal56@aol.com thanks so very much

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