low grade b cell indolent marginal zone lymphoma

dopey
dopey Member Posts: 4
in Lymphoma (Hodgkin and Non-Hodgkin) #1
hi everyone,

i am a 56 yr old female diagnosed with low grade indolent b cell marginal zone lymphoma on 1/18/11. my regimen is a 7hr infusion of rituxin and treanda on day 1, treanda day 2, and neulasta shot on day 3, every 28 days. so far i have only experienced fatigue and slight nausea, actually i have been feeling great. i completed cycle 2 yesterday. today seems to be my achy, fatigue day, however with only 2 cycles under my belt, i am unsure how my side effects will be as treatment goes on. i am curious as to what others on this regimen are experiencing, and wondering if any of you have had hair loss? this diagnosis, as i am sure with all of you, was overwhelming as i had no symptoms, except an enlarged lymph node. it was removed and biopsied, and because i have had a history of benign tumors removed, brain and spine, i was thouroughly confident that this would be no different. big surprise! i have reached the point now that i can discuss my disease, and just found this discussion board today. i hope all of you continue to do well.
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Comments

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #2
    Welcome
    Hi,
    I do not have the same cancer as you, nor did I do the same chemo. My story however is similar in regards to having no symptoms other than a few swollen lumps..groin and neck. My diagnosis is Follicular Non-Hodgkins Lymphoma- indolent-Grade2-Stage3(no bone involvement)TypeA. I finished 6 rounds of chemo..(CVP-R) on Dec 14th and had my first Rituxan maint infusion on Feb 14th. I'm doing good, some fatigue, achey joints, but overall..OK. Sounds like you have beeen doing fairly well also which is good to hear. Shortly, others in the group will add their comments and you will have your questions answered. This is a wonderful support group with many caring loving folks that are dealing with, or have gone through the same as you. Once again..."Welcome"!
    Love...Sue (FNHL-2-3A-6/10)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #3
    Welcome
    Dopey,
    Welcome to the site that you never thought you would be on. Nobody ever did,but it is a great place to be when we are diagnosed with lymphoma. The people here have all been exactly where you are now. It is scary being in the unknown. I have follicular grade 1 stage 4 which means it has reached the bone. Its all treated the same. Been in remission since Oct.2010. Just had my first post remission pet scan and first rituxin infusion. My next is tomorrow. Stay with us and keep us updated. We will be here to help you. John(FNHL-1-4A-5/10)
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #4
    COBRA666 said:

    Welcome
    Dopey,
    Welcome to the site that you never thought you would be on. Nobody ever did,but it is a great place to be when we are diagnosed with lymphoma. The people here have all been exactly where you are now. It is scary being in the unknown. I have follicular grade 1 stage 4 which means it has reached the bone. Its all treated the same. Been in remission since Oct.2010. Just had my first post remission pet scan and first rituxin infusion. My next is tomorrow. Stay with us and keep us updated. We will be here to help you. John(FNHL-1-4A-5/10)

    Tomorrow...
    Hey John,
    Good luck tomorrow..try not to think about the new info we learned today about the Rituxan, but maybe run the info by your onc and see what he/she has to say. I forgot you go in for your R-infusion every week for one month and then don't go again for what..5 mo's? Wish I could get it on that schedule instead of every other month...oh well! Anyways....have a peaceful infusion day...the pre-meds will help you "nappy poo" during it. I sleep the "whole" time...sure hope my mouth isn't hanging open while sleeping..ha! Love...Sue (FNHL-2-3a-6/10)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #5
    allmost60 said:

    Tomorrow...
    Hey John,
    Good luck tomorrow..try not to think about the new info we learned today about the Rituxan, but maybe run the info by your onc and see what he/she has to say. I forgot you go in for your R-infusion every week for one month and then don't go again for what..5 mo's? Wish I could get it on that schedule instead of every other month...oh well! Anyways....have a peaceful infusion day...the pre-meds will help you "nappy poo" during it. I sleep the "whole" time...sure hope my mouth isn't hanging open while sleeping..ha! Love...Sue (FNHL-2-3a-6/10)

    Thank You
    Sue,
    Thank you for the well wishes. They tell me it will only take about an hour because now my body is used to the R because I just had it last week. John
  • miss maggie
    miss maggie Member Posts: 929
    #6
    allmost60 said:

    Tomorrow...
    Hey John,
    Good luck tomorrow..try not to think about the new info we learned today about the Rituxan, but maybe run the info by your onc and see what he/she has to say. I forgot you go in for your R-infusion every week for one month and then don't go again for what..5 mo's? Wish I could get it on that schedule instead of every other month...oh well! Anyways....have a peaceful infusion day...the pre-meds will help you "nappy poo" during it. I sleep the "whole" time...sure hope my mouth isn't hanging open while sleeping..ha! Love...Sue (FNHL-2-3a-6/10)

    RituxaSUE????
    Hello Sue,

    Please forgive me for posting such a one liner. Please explain the following to me,
    Thanks???

    try not to think about the new info we learned today about the Rituxan, (PLEASE EXPLAIN)

    Love Maggie
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #7
    miss maggie said:

    RituxaSUE????
    Hello Sue,

    Please forgive me for posting such a one liner. Please explain the following to me,
    Thanks???

    try not to think about the new info we learned today about the Rituxan, (PLEASE EXPLAIN)

    Love Maggie

    Please explain..
    Hi Maggie,
    I was refering to the reply Leslie posted to you earlier when she was explaining to you about PML. Here is the message from Leslie in case you missed seeing it.It was some information John and I had not heard about, concerning Rituxan...Love..Sue

    March 31, 2011 - 8:59am
    PML
    Hi Maggie,
    PML stands for Progressive Multifocal Leukoencephalopathy and can be associated with having ever had Rituxan treatments or a few other chemo drugs. It is a virus which attacks and distroys the white matter of the brain and is associated with having both the JC virus and a suppressed immun system. The prognosis is very grim. Both my Oncologist and my Rheumatologist made sure to warn me when about PML when I started Rituxan treatments. It is also a black box warning on the prescription insert. Scares me everytime I get an infusion. Really scary and my heart breaks for Liltazcat and her husband.

    You Maggie are a real sweet heart, very kind and loving and I so appreciate you.

    Blessings to you,
    Leslie
  • dopey
    dopey Member Posts: 4
    #8
    http://csn.cancer.org/crss/node/215368
    thank you all.....good to be part of a group that i now have something in common with, and yes, one i thought i would never join. looking forward to the discussions.

    sherill (dopey)
  • miss maggie
    miss maggie Member Posts: 929
    #9
    allmost60 said:

    Please explain..
    Hi Maggie,
    I was refering to the reply Leslie posted to you earlier when she was explaining to you about PML. Here is the message from Leslie in case you missed seeing it.It was some information John and I had not heard about, concerning Rituxan...Love..Sue

    March 31, 2011 - 8:59am
    PML
    Hi Maggie,
    PML stands for Progressive Multifocal Leukoencephalopathy and can be associated with having ever had Rituxan treatments or a few other chemo drugs. It is a virus which attacks and distroys the white matter of the brain and is associated with having both the JC virus and a suppressed immun system. The prognosis is very grim. Both my Oncologist and my Rheumatologist made sure to warn me when about PML when I started Rituxan treatments. It is also a black box warning on the prescription insert. Scares me everytime I get an infusion. Really scary and my heart breaks for Liltazcat and her husband.

    You Maggie are a real sweet heart, very kind and loving and I so appreciate you.

    Blessings to you,
    Leslie

    Thanks Sue
    Hello Sue,

    Thank you for taking the time to paste Leslie's response to me.

    I appreciate all of you and all your knowledge. Just when I thought I did all my research,
    I read something that is so scary. I did found out what Rituxan is made from when I attended
    a conference in the early part of 2010. I'd rather not say. But, if anyone requests the answer, I will post the truth. It was bad enough, but just reading Leslie's post sure put a damper on my day.

    Love Maggie Let the angels watch over all of us
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #10
    miss maggie said:

    Thanks Sue
    Hello Sue,

    Thank you for taking the time to paste Leslie's response to me.

    I appreciate all of you and all your knowledge. Just when I thought I did all my research,
    I read something that is so scary. I did found out what Rituxan is made from when I attended
    a conference in the early part of 2010. I'd rather not say. But, if anyone requests the answer, I will post the truth. It was bad enough, but just reading Leslie's post sure put a damper on my day.

    Love Maggie Let the angels watch over all of us

    Please post it!!!!!!!!!!!!!
    Maggie,
    Please post what R is made from. Why not. You can't imagine what is going thru my mind. John(FNHL-1-4A-5/10)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #11
    dopey said:

    http://csn.cancer.org/crss/node/215368
    thank you all.....good to be part of a group that i now have something in common with, and yes, one i thought i would never join. looking forward to the discussions.

    sherill (dopey)

    Sherill
    Sherill,
    Glad you posted your name. I felt funny calling you Dopey. John
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #12
    dopey said:

    http://csn.cancer.org/crss/node/215368
    thank you all.....good to be part of a group that i now have something in common with, and yes, one i thought i would never join. looking forward to the discussions.

    sherill (dopey)

    Sherill
    Sherill,
    Glad you posted your name. I felt funny calling you Dopey. Welcome to the group John(FNHL-1-4A-5/10)
  • yesyes2
    yesyes2 Member Posts: 591
    #13
    COBRA666 said:

    Please post it!!!!!!!!!!!!!
    Maggie,
    Please post what R is made from. Why not. You can't imagine what is going thru my mind. John(FNHL-1-4A-5/10)

    Feel Like Some Cheese?
    John, I believe, but might be wrong, that RAT DNA is used for the delivery system in Rituxan. Originally that was why they thought people had an allergic reaction on the first infusion. May still be the case...... Do you find you eat more cheese now????

    Maggie, is that what you were told?

    Have a great day, Love Ya
    Leslie
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #14
    yesyes2 said:

    Feel Like Some Cheese?
    John, I believe, but might be wrong, that RAT DNA is used for the delivery system in Rituxan. Originally that was why they thought people had an allergic reaction on the first infusion. May still be the case...... Do you find you eat more cheese now????

    Maggie, is that what you were told?

    Have a great day, Love Ya
    Leslie

    rats??????????
    Leslie,
    You took the words right out of my mouth. Cheese so much GOODER to me now. !!!!!!! John
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #15
    yesyes2 said:

    Feel Like Some Cheese?
    John, I believe, but might be wrong, that RAT DNA is used for the delivery system in Rituxan. Originally that was why they thought people had an allergic reaction on the first infusion. May still be the case...... Do you find you eat more cheese now????

    Maggie, is that what you were told?

    Have a great day, Love Ya
    Leslie

    Hmmmm?
    Come to think of it, my two front teeth do look a little longer now! ha!ha!ha!
    Loves ya...silly Sue...(FNHL-2-3A-6/10)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #16
    allmost60 said:

    Hmmmm?
    Come to think of it, my two front teeth do look a little longer now! ha!ha!ha!
    Loves ya...silly Sue...(FNHL-2-3A-6/10)

    RATuxan
    Well it does not surprise me to be honest with ya. When I was a kid in Jr.high school we went on a field trip to the Esskay pork plant and when I saw how and what went into the making of a hot dog I would not eat one for 20 years. The next year went to the Yoohoo chocolate drink factory. Haven't had one in over 45 years. Used to be my favorite drink. So whats a little rat dna. John(FNHL-1-4A-5/10)
  • Michele23
    Michele23 Member Posts: 168
    #17
    COBRA666 said:

    Sherill
    Sherill,
    Glad you posted your name. I felt funny calling you Dopey. John

    Now we are part rat.......
    Hi Sherill,Welcome.I am doing the Treanda/Rituxan with Neulasta shot given day2.I ,on the other hand have had many unexpected side effects.Had a 7day headache,rash with bumps,stomach pain,bone pain,severe itching ,tingling in legs and feet and foot pain.After dealing with NHL for the last16 yrs I don't usually read about side effects,guess I should have in this case.Was Dx1995 Low Grade Follicular Stage3.Have done local Radiation twice-Chop-Rituxan/10-thats 40-now this.So with that said I should be a pro at this.Don't go the whiny routine and just feel lets do it and get it behind me as I have a life to enjoy yet.The balk of my nodes were in my neck and went down rather quickly so it seems to be working -thank God!Did they give you a timeline of remission?Was reading on another site a fellow just had this done 10 months ago and his NHL is back already,not to scare you as we are all different.Just completed round 3 March18th and will have scans done Apr.16thPet/ct and brain.Guess we will know the following Monday how many more treatments to go UGH.Anyway I heard the rat thing years back and thus far no tail growing here and I'll go ck for whiskers.Crawling around on all fours isn't fun either LOL.Long story another day.....Hope you'll keep in touch have a great weekend all,Michele P.S.also 56 yrs.old
  • miss maggie
    miss maggie Member Posts: 929
    #18
    yesyes2 said:

    Feel Like Some Cheese?
    John, I believe, but might be wrong, that RAT DNA is used for the delivery system in Rituxan. Originally that was why they thought people had an allergic reaction on the first infusion. May still be the case...... Do you find you eat more cheese now????

    Maggie, is that what you were told?

    Have a great day, Love Ya
    Leslie

    Still laughing Leslie,Sue,John
    Leslie, I love your sense of humor. John, Leslie is right. RAT DNA. Sue, sorry your
    front teeth are getting longer. Maybe with all the radiation coming our way from Japan, we might all turn into rats. LOL

    I love all you guys. Enjoy the weekend. Maggie
  • dopey
    dopey Member Posts: 4
    #19
    Michele23 said:

    Now we are part rat.......
    Hi Sherill,Welcome.I am doing the Treanda/Rituxan with Neulasta shot given day2.I ,on the other hand have had many unexpected side effects.Had a 7day headache,rash with bumps,stomach pain,bone pain,severe itching ,tingling in legs and feet and foot pain.After dealing with NHL for the last16 yrs I don't usually read about side effects,guess I should have in this case.Was Dx1995 Low Grade Follicular Stage3.Have done local Radiation twice-Chop-Rituxan/10-thats 40-now this.So with that said I should be a pro at this.Don't go the whiny routine and just feel lets do it and get it behind me as I have a life to enjoy yet.The balk of my nodes were in my neck and went down rather quickly so it seems to be working -thank God!Did they give you a timeline of remission?Was reading on another site a fellow just had this done 10 months ago and his NHL is back already,not to scare you as we are all different.Just completed round 3 March18th and will have scans done Apr.16thPet/ct and brain.Guess we will know the following Monday how many more treatments to go UGH.Anyway I heard the rat thing years back and thus far no tail growing here and I'll go ck for whiskers.Crawling around on all fours isn't fun either LOL.Long story another day.....Hope you'll keep in touch have a great weekend all,Michele P.S.also 56 yrs.old

    hi,
    i havent had any
    hi,

    i havent had any timeline of remission, i am a newbie to lymphoma so i guess it'll be another big surprise when i get there! my biggest problem so far has been my compromised immune system, i am one infection after another, and actually have been that way for years, and had no idea why. before last weeks cycle 2 i went away for the weekend with my daughter and 4 small grandchildren. they all ended up getting sick, including my daughter, i was stuck for 12 hours both ways in the car with them coughing and hacking and sneezing all over me, so it was inevitable that i ended up in the e.r. last friday with a fever, chills, cough, congestion and acute bronchitis. i left with yet another antibiotic, (already taking augmentin for a staph infection for the last 3 weeks), and have been practically bedridden for the last 5 days. i had my bloodwork today, all numbers were great, and my onco doc checked me over, said my chest was clear, but very concerned because i am sick all the time. ah, the joys of lymphoma, and chemo. living in the gloomy northeast doesnt help much either, i guess. my neck nodes went down immediately after cycle one. i am pretending i didnt read the rat thing, counting my lucky stars that my chemo routine is not as toxic as most and hoping every day that i dont lose my hair. i hope your scan on the 16th goes well, and yes, as a member of this exclusive club we are in, i will keep in touch. nobody but us lymphies can really truly relate!
    sherill
  • dopey
    dopey Member Posts: 4
    #20
    COBRA666 said:

    Sherill
    Sherill,
    Glad you posted your name. I felt funny calling you Dopey. Welcome to the group John(FNHL-1-4A-5/10)

    john,
    dont think twice about
    john,
    dont think twice about calling me dopey, my husband, kids and family have called me that for years, i own it proudly!

    dopey
  • CountryGal7557
    CountryGal7557 Member Posts: 164 Member
    #21
    dopey said:

    hi,
    i havent had any
    hi,

    i havent had any timeline of remission, i am a newbie to lymphoma so i guess it'll be another big surprise when i get there! my biggest problem so far has been my compromised immune system, i am one infection after another, and actually have been that way for years, and had no idea why. before last weeks cycle 2 i went away for the weekend with my daughter and 4 small grandchildren. they all ended up getting sick, including my daughter, i was stuck for 12 hours both ways in the car with them coughing and hacking and sneezing all over me, so it was inevitable that i ended up in the e.r. last friday with a fever, chills, cough, congestion and acute bronchitis. i left with yet another antibiotic, (already taking augmentin for a staph infection for the last 3 weeks), and have been practically bedridden for the last 5 days. i had my bloodwork today, all numbers were great, and my onco doc checked me over, said my chest was clear, but very concerned because i am sick all the time. ah, the joys of lymphoma, and chemo. living in the gloomy northeast doesnt help much either, i guess. my neck nodes went down immediately after cycle one. i am pretending i didnt read the rat thing, counting my lucky stars that my chemo routine is not as toxic as most and hoping every day that i dont lose my hair. i hope your scan on the 16th goes well, and yes, as a member of this exclusive club we are in, i will keep in touch. nobody but us lymphies can really truly relate!
    sherill

    Rituxan&Treanda Survivor
    Sherill, Your story sounds very similar to mine. even the staph infection! which I got from bacteria left by a woodtick. I just wanted to say you probably won't lose your hair, that is one of the new improved advancements of Treanda - that's what my Onc. said. I also didn't lose much weight, so I didn't 'look' like I was going through a tough time in my life. only those who knew I was going through treatment would always comment "you look great, one would never know unless you told them"

    I went thru 4 monthly treatments Day1 and Day2 that you explained, except I did not have the shot you mention. after the 4th treatment, I had a BMB and PET Scan - all clear! finished up with 4 weekly Rituxan (Rat DNA) infusions Aug 2010, on my last day at the Cancer Clinic, all the nurses stopped what they were doing, cheering and clapping. Like so many have said on this site, the infusion/cancer center becomes your 2nd family & I would agree.

    My journey is: http://lifeisgood2010.wordpress.com/

    the late-effects of achy joints/tissues comes-n-goes. lately it's been bad...there are days I feel 90 in a 53 year old body. Is hard to explain this stuff when I still look 50, but feel 90.

    anywho, keep us posted!
    Life is still pretty darn Good! =)
    Janelle

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