Rituxen maintenance for NHL stage 2 grade 3A???

nhldaughter
nhldaughter Member Posts: 67
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi all,

My mom is about to finish her 4th (hopefully last) round of chemo (Bendamustine-Rituxen) for NHL stage 2 grade 3A (indolent/follicular). Though R-CHOP was suggested by the oncologist we got a second opinion and opted to go with B-R since it had less harsh side effects. We got good news and her 2+ cm tumors were gone after the second round. Since the research and doc suggested 4 cycles, we continued. The doctor had mentioned doing maintenance after this. I have read some of your posts about the side effects of Rituxen and am wondering if anyone out there has had NHL stage 2 grade 3A and has used the Rituxen maintenance. If yes, for how long and how often? The UCLA doctor who gave us the B-R option says that there is no need to do Rituxen since you don't "treat" this type and it always comes back. So since the long term side effects are not known, it shouldn't be given as a maintenance drug. He also says that research shows that if you use Rituxen as maintenance when the disease does come back it will not be able to be treated as easily and your body will sort of become immune to Rituxen. Has anyone heard of this???? There is very little research out there on this drug and I am concerned whether we should have my mom continue with Rituxen or just stop all treatment. Most research says that it should be only for 2 years, every six months for 4 weeks???? Please help and share your advice/experience. Thanks!
Roya

Comments

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #2
    Rituxin
    .
  • CountryGal7557
    CountryGal7557 Member Posts: 164 Member
    #3
    My experience w/B-R
    My journey is documented @ http://lifeisgood2010.wordpress.com/ if you'd like to compare your Mom's Journey to mine as each individual's experience requires a treatment plan of it's own. that is what I believe anyway. My treatments consisted of monthly B-R which took 1.5 days each month. after 3 treatments the results were clear. I did finish with the 4th treament and then followed up with 4 more weekly Rituxan treatments. I am not doing a monthly or yearly Rixtuan maintenance. my doctor is going to monitor my NHL thru blood draws. he is not a fan of too many PET scans.

    Ask your doctor to contact mine: Dr. Gerald Gross @ Roger Maris Cancer Center
    701.234.6161

    I found this video to be a comfort as B-R is so new: http://www.youtube.com/watch?v=rEDNldZeYfE&feature=related
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #4
    Rituxan maint....
    Hi Roya,
    So glad to hear from you with the up-date on your mom and dad. Actually Roya, there is quite a bit of information out there about Rituxan used as maint after the initial first-line chemo drugs. However...with that being said, it does appear that doctors are divided on their thinking about the pro's and con's of extended use. Most go with the 2 year maint and then stop it if the disease is in check and no new problems occur during the 2 years of use. What I DO know, or understand from all I've read is that Rituxan has shown to be very beneficial in keeping FNHL in remission for longer lengths of time than if not used. We know the disease is going to come back at sometime, but keeping it in remission for longer lengths of time gives our bodies time to heal and prepare for the next go-around. After 2 years of maint if there is no eveidence of disease, a "watch and wait" approach is then taken until new tumors or new activity starts up again. From everything you have shared about your moms progress and the good results with her treatments, I would suggest trusting what her doctor is doing and not go to far ahead in worrying about what meds to use next. I hope your dad will have as good of care and results if and when he may need treatment. Please keep us informed on him also. Hang in there Roya...it sounds like you and your sister are doing an excellent job with caring for your parents. Thanks for checking in..Love...Sue (FNHL-2-3A-6/10)
    P.S...I started my rituxan maint on Feb 14th and haven't had any problems. I'll go every other month for one infusion for the next 2 years. I'm just taking it one day at a time, and so far, so good! :o)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #5
    allmost60 said:

    Rituxan maint....
    Hi Roya,
    So glad to hear from you with the up-date on your mom and dad. Actually Roya, there is quite a bit of information out there about Rituxan used as maint after the initial first-line chemo drugs. However...with that being said, it does appear that doctors are divided on their thinking about the pro's and con's of extended use. Most go with the 2 year maint and then stop it if the disease is in check and no new problems occur during the 2 years of use. What I DO know, or understand from all I've read is that Rituxan has shown to be very beneficial in keeping FNHL in remission for longer lengths of time than if not used. We know the disease is going to come back at sometime, but keeping it in remission for longer lengths of time gives our bodies time to heal and prepare for the next go-around. After 2 years of maint if there is no eveidence of disease, a "watch and wait" approach is then taken until new tumors or new activity starts up again. From everything you have shared about your moms progress and the good results with her treatments, I would suggest trusting what her doctor is doing and not go to far ahead in worrying about what meds to use next. I hope your dad will have as good of care and results if and when he may need treatment. Please keep us informed on him also. Hang in there Roya...it sounds like you and your sister are doing an excellent job with caring for your parents. Thanks for checking in..Love...Sue (FNHL-2-3A-6/10)
    P.S...I started my rituxan maint on Feb 14th and haven't had any problems. I'll go every other month for one infusion for the next 2 years. I'm just taking it one day at a time, and so far, so good! :o)

    Rituxin
    Sue,
    The R treatment is kind of confusing to me. I asked my Onc. about how often I get them and he said every 6 months for 2 years. Wonder why it is different for us when we are so close in our diagnosis. John(FNHL=1=4A-5/10)
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #6
    COBRA666 said:

    Rituxin
    Sue,
    The R treatment is kind of confusing to me. I asked my Onc. about how often I get them and he said every 6 months for 2 years. Wonder why it is different for us when we are so close in our diagnosis. John(FNHL=1=4A-5/10)

    Maybe...
    Hi John,
    Maybe because I didn't reach full remission as you did. My doctor seems to feel that with-in the first 2 or 3 infusions of R that I will most likely be in full remission. I won't know for sure if remission happens, but as long as the tumor under my colar bone doesn't increase in size and I don't start having any warning signs and my blood panels stay cool, then i guess we will just "assume" I'm in remission. He said I won't have another CT-scan until Jan 2012 unless something new developes before then. I do remember him saying that the reason he is going with my infusion every 2 months instead of like your plan, is because he wants the rituxan in me all of the time with no gaps. Each doctor does it their own way, even though our disease is the same. Remember...my doc never gave me the neulastra shots like you had. We questioned that also, but he said my counts were ok and didn't warrant taking the shot. Man...there were a few months I could have sworn my counts were darn low, as tired as I was. Also John...remember I don't have bone involvement like you...if that makes much difference I just don't know. Anyways...when you go in next week run all these questions by your onc and see what he thinks. Got snow here again today, but it's not sticking..cold..brrrr! Talk to you soon...
    Sue..(FNHL-2-3A-6/10)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #7
    allmost60 said:

    Maybe...
    Hi John,
    Maybe because I didn't reach full remission as you did. My doctor seems to feel that with-in the first 2 or 3 infusions of R that I will most likely be in full remission. I won't know for sure if remission happens, but as long as the tumor under my colar bone doesn't increase in size and I don't start having any warning signs and my blood panels stay cool, then i guess we will just "assume" I'm in remission. He said I won't have another CT-scan until Jan 2012 unless something new developes before then. I do remember him saying that the reason he is going with my infusion every 2 months instead of like your plan, is because he wants the rituxan in me all of the time with no gaps. Each doctor does it their own way, even though our disease is the same. Remember...my doc never gave me the neulastra shots like you had. We questioned that also, but he said my counts were ok and didn't warrant taking the shot. Man...there were a few months I could have sworn my counts were darn low, as tired as I was. Also John...remember I don't have bone involvement like you...if that makes much difference I just don't know. Anyways...when you go in next week run all these questions by your onc and see what he thinks. Got snow here again today, but it's not sticking..cold..brrrr! Talk to you soon...
    Sue..(FNHL-2-3A-6/10)

    THAT DOES MAKE SENSE
    Sue,
    That does make sense. Never thought of it that way. All kidding aside I am not only short 100% physically but my thought processes are not as sharp as they used to be either. I guess I don't think things thru anymore. Thanks, John(FNHL-1-4A-5/10)
  • nhldaughter
    nhldaughter Member Posts: 67
    #8
    COBRA666 said:

    THAT DOES MAKE SENSE
    Sue,
    That does make sense. Never thought of it that way. All kidding aside I am not only short 100% physically but my thought processes are not as sharp as they used to be either. I guess I don't think things thru anymore. Thanks, John(FNHL-1-4A-5/10)

    Thank you!
    Thank you all for the comments. CountryGal (sorry couldn't find your name) your blog was very helpful! I read everything, thank you. My mom's 4th round is tomorrow and I guess we'll discuss what maintenance plan the doctor wants for her... I am having a down moment since I constantly read/hear how this thing returns and I am in denial and don't want to accept that.
    Please keep the advice/experience with Rituxen coming!
    Roya
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #9
    nhldaughter said:

    Thank you!
    Thank you all for the comments. CountryGal (sorry couldn't find your name) your blog was very helpful! I read everything, thank you. My mom's 4th round is tomorrow and I guess we'll discuss what maintenance plan the doctor wants for her... I am having a down moment since I constantly read/hear how this thing returns and I am in denial and don't want to accept that.
    Please keep the advice/experience with Rituxen coming!
    Roya

    Schedules
    My doc asked me what I wanted to do with the rituxan maint. He said I could do either every 6 months once a week for 4 weeks, or every other month. He thought it would be kinder to my veins to do the every other and I was getting sick of going so often. It works for me.

    I'm getting nervous again...scan on Monday. I hate nerves.
  • CountryGal7557
    CountryGal7557 Member Posts: 164 Member
    #10
    nhldaughter said:

    Thank you!
    Thank you all for the comments. CountryGal (sorry couldn't find your name) your blog was very helpful! I read everything, thank you. My mom's 4th round is tomorrow and I guess we'll discuss what maintenance plan the doctor wants for her... I am having a down moment since I constantly read/hear how this thing returns and I am in denial and don't want to accept that.
    Please keep the advice/experience with Rituxen coming!
    Roya

    Your Welcome
    I am glad my blog was of some help. It helps me know that what I shared through my journey could help someone else starting out new and had so many questions. Janelle =)
  • Michele23
    Michele23 Member Posts: 168
    #11
    Rituxan Maint.
    Hi Roya,I'm in the process of doing Treanda/Rituxan next week is my 3rd round.Anyway being a 16yr.survivor of Low Grade Follicular Stage 3 I have done a total of 10 Rituxan over the last 10 yrs.This would actually be 40 in all.So yes I have done the maintenance.My nodes kept returning in mainly my face and neck areas.My onc feels Rituxan doesn't work so well in head areas.It did shrink some nodes but mainly helped with my symptoms which are itching.I didn't have major side effects from Rituxan,next to Chop its a piece of cake.Had a few reactions from 1st treatments which they resolved quickly,but otherwise was just tired.Some "slight" nausea which again they had meds. for.Mine was never given less then 6months apart.My present treatments are working very well as this is the first time in years I've felt the muscles in my neck.Always had nodes along the jaw.My understanding is Treanda/Rituxan should work for many months if not years to come.Why would they want to do Rituxan now?I will certainly ask my onc. this question.I have a very good quality of life,when not in treatment we travel at least twice a year on vacation.Due to the fact I've had so much treatment my mind is not so sharp and I do get tired easily.My onc only treats as nodes return and symptoms arise.My treatment thus far have been: Local Radiation 2- Chop Rituxan 10 Treanda/Rituxan by 6 or 8 not sure yet Would like to keep in touch.Take care,Michele
  • KC13167
    KC13167 Member Posts: 215
    #12
    Michele23 said:

    Rituxan Maint.
    Hi Roya,I'm in the process of doing Treanda/Rituxan next week is my 3rd round.Anyway being a 16yr.survivor of Low Grade Follicular Stage 3 I have done a total of 10 Rituxan over the last 10 yrs.This would actually be 40 in all.So yes I have done the maintenance.My nodes kept returning in mainly my face and neck areas.My onc feels Rituxan doesn't work so well in head areas.It did shrink some nodes but mainly helped with my symptoms which are itching.I didn't have major side effects from Rituxan,next to Chop its a piece of cake.Had a few reactions from 1st treatments which they resolved quickly,but otherwise was just tired.Some "slight" nausea which again they had meds. for.Mine was never given less then 6months apart.My present treatments are working very well as this is the first time in years I've felt the muscles in my neck.Always had nodes along the jaw.My understanding is Treanda/Rituxan should work for many months if not years to come.Why would they want to do Rituxan now?I will certainly ask my onc. this question.I have a very good quality of life,when not in treatment we travel at least twice a year on vacation.Due to the fact I've had so much treatment my mind is not so sharp and I do get tired easily.My onc only treats as nodes return and symptoms arise.My treatment thus far have been: Local Radiation 2- Chop Rituxan 10 Treanda/Rituxan by 6 or 8 not sure yet Would like to keep in touch.Take care,Michele

    Facial nodes..
    Michele,

    This may be a silly question.....Where do you find the enlarged nodes on your face? I swear that I can feel nodes in my forehead, at the outer edge of my eye brows and just above the inner most area of my eyes. When searching the net, I am unable to find any nodes in those places. I remember having some discomfort in my forehead before R-CHOP. They were not noticeable during chemo but, have been palpable for the last 6 weeks or so.

    I had an MRI earlier this week and will see my onco on Wednesday to review the results. I plan on asking her for another PET scan at that time as well.

    Thanks, Kellie
  • Michele23
    Michele23 Member Posts: 168
    #13
    KC13167 said:

    Facial nodes..
    Michele,

    This may be a silly question.....Where do you find the enlarged nodes on your face? I swear that I can feel nodes in my forehead, at the outer edge of my eye brows and just above the inner most area of my eyes. When searching the net, I am unable to find any nodes in those places. I remember having some discomfort in my forehead before R-CHOP. They were not noticeable during chemo but, have been palpable for the last 6 weeks or so.

    I had an MRI earlier this week and will see my onco on Wednesday to review the results. I plan on asking her for another PET scan at that time as well.

    Thanks, Kellie

    Hi Kellie,My node was just above the left eyebrow.Onc and "five" other drs didn't think anything of it.So I in turn went to a plastic surgeon and had the thing removed.Guess what DA!!!NHL.Unfortunately the surgeon didn't get it all and it started growing in somewhat the corner at the end of the brow closest to the nose but was heading toward the eye.This time I had to have radiation so no problem since.I also had a node {like overnight} pop up inside my left cheek,and was getting huge.Again almost same story but had an ENT remove the node and didn't need radiation.Ask my onc to do a brain scan as I was scared being my cancer lately has been in the neck and face.So they did an MRI to ease my mind,and this was clear.The way I look at it most drs don't have a clue so if you find a lump that doesn't go away get it removed.Can't begin to tell you how many times drs have told me lumps were not cancer when in deed they were!It's our lives we're dealing with.One last thing I'd like to share.Had just had my pet/ct done 3 months before the cheek node and scans were clear but after having MRI on cheek more nodes showed up.Found this very interesting, rarely scary.So this makes me think the MRI is better at picking up things in the face and head. Michele
  • KC13167
    KC13167 Member Posts: 215
    #14
    Michele23 said:

    Hi Kellie,My node was just above the left eyebrow.Onc and "five" other drs didn't think anything of it.So I in turn went to a plastic surgeon and had the thing removed.Guess what DA!!!NHL.Unfortunately the surgeon didn't get it all and it started growing in somewhat the corner at the end of the brow closest to the nose but was heading toward the eye.This time I had to have radiation so no problem since.I also had a node {like overnight} pop up inside my left cheek,and was getting huge.Again almost same story but had an ENT remove the node and didn't need radiation.Ask my onc to do a brain scan as I was scared being my cancer lately has been in the neck and face.So they did an MRI to ease my mind,and this was clear.The way I look at it most drs don't have a clue so if you find a lump that doesn't go away get it removed.Can't begin to tell you how many times drs have told me lumps were not cancer when in deed they were!It's our lives we're dealing with.One last thing I'd like to share.Had just had my pet/ct done 3 months before the cheek node and scans were clear but after having MRI on cheek more nodes showed up.Found this very interesting, rarely scary.So this makes me think the MRI is better at picking up things in the face and head. Michele

    Thanks!
    Michele, Thank you for sharing. The MRI that I had last week was of the cervical, thoracic, lumbar and sacreal spine. Glad I'm seeing my onco on Wednesday. Kellie

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