Rituxan only

catwink22
catwink22 Member Posts: 281
I have searched the posts here and only find Rituxan taken with the other chemo drugs or as a maintenance after chemo, has anyone done just the Rituxan as a first line of treatment? I have been doing wait & watch and have not had treatments of any kind. I am stage 3 grade 1 Follicular NHL in all my lymph nodes and a spot on my hip. My last PET scan showed an increase in activity although nothing in size. I am waiting for pathology report on bone biopsy from hip, but Onc is suggesting Rituxan only, once a week for 4 weeks. She thinks we should save the other chemo drugs for a later time if needed. Anyone know of this line of treatment? Thank you!
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Comments

  • yesyes2
    yesyes2 Member Posts: 591
    Rituxan Only
    Hi Cateink22,

    My initial treatment for my B cell NHL was Rituxan only. I was diagnosed with a very rare B & T cell lymphoma and 2 specialists felt Rituxan along would be the best way to go and see how I did even though we were dealing with an aggressive cancer. I also had to discontinue my immunsuppressing drugs ( which I had been on for 14 yrs). I had Ritunan once a week for 4 weeks and 8 weeks later was in a CR. I than did one Rituxan treatment every 8 weeks from May 2008 until June 2009 when I had a recurrance. Didn't surprise me but certainly shocked my doctors who were hoping for a cure with Rituxan alone. I just finished 6 cycles of RCHOP on 2/15, and was in a CR after 2 cycles. And had a CT Scan this morning. Am hoping I'm still in remission.Rituxan is much easier and worth a shot in my opinion. Especially if your fNHL is slow growing.
    Sorry for the long winded answer. But hope the info is helpful.
    Good luck on your path report. I'll be thinking of you.

    Leslie
  • miss maggie
    miss maggie Member Posts: 929
    rituxan only
    Hello and wish the best on your bone marrow biopsy.

    I received rituxan only once a week for 4 weeks. I had no side effects. I have stage 1, low grade, b cell NHL. I had treatment the beginning of dec 2009 and finished the end of december 2009. I will be going for a pet scan end of april.

    Plaase post the results of your biopsy. Miss maggie
  • catwink22
    catwink22 Member Posts: 281

    rituxan only
    Hello and wish the best on your bone marrow biopsy.

    I received rituxan only once a week for 4 weeks. I had no side effects. I have stage 1, low grade, b cell NHL. I had treatment the beginning of dec 2009 and finished the end of december 2009. I will be going for a pet scan end of april.

    Plaase post the results of your biopsy. Miss maggie

    Thank you!
    Thank you both for sharing your experiences I definately feel more comfortable about it now. Sometimes it seems that you're the only one dealing with all these decisions, what a blessing to find people like you! I had a bone marrow biopsy done last fall and it was clear, this was an actual bone biopsy of my hip.(they had to use a hammer!) Good Luck to you all as well and thanks again!
  • JoanieP
    JoanieP Member Posts: 573

    rituxan only
    Hello and wish the best on your bone marrow biopsy.

    I received rituxan only once a week for 4 weeks. I had no side effects. I have stage 1, low grade, b cell NHL. I had treatment the beginning of dec 2009 and finished the end of december 2009. I will be going for a pet scan end of april.

    Plaase post the results of your biopsy. Miss maggie

    DO you ever stop being paranoid?
    I had Stage 3A Follicular lymphoma . My last PET scan was Sept. I had a blood test (all good) and physical last week. Last night I had two small night sweats. I feel tired and am still chilling. I want to just not think about this:) I do not want to be a paranoid person . I heard time but it has been 9 months since my last chemo. Am I crazy?
  • catwink22
    catwink22 Member Posts: 281
    JoanieP said:

    DO you ever stop being paranoid?
    I had Stage 3A Follicular lymphoma . My last PET scan was Sept. I had a blood test (all good) and physical last week. Last night I had two small night sweats. I feel tired and am still chilling. I want to just not think about this:) I do not want to be a paranoid person . I heard time but it has been 9 months since my last chemo. Am I crazy?

    Make a call
    Hi Joanie,
    NO YOU'RE NOT CRAZY! :>) Unfortunately we don't have the luxury of shrugging things off. Call your physician, maybe it's nothing, but wouldn't it be a comfort to hear that? If it's something, then take care of it NOW before it gets out of control. In my book there's no such thing as being too careful (or paranoid). Sometimes I feel pesty, but then I remind myself this is serious stuff and that's what my physician is there for. Good Luck! I'll be thinking of you!
  • JoanieP
    JoanieP Member Posts: 573
    catwink22 said:

    Make a call
    Hi Joanie,
    NO YOU'RE NOT CRAZY! :>) Unfortunately we don't have the luxury of shrugging things off. Call your physician, maybe it's nothing, but wouldn't it be a comfort to hear that? If it's something, then take care of it NOW before it gets out of control. In my book there's no such thing as being too careful (or paranoid). Sometimes I feel pesty, but then I remind myself this is serious stuff and that's what my physician is there for. Good Luck! I'll be thinking of you!

    Thanks
    I appreciate what you said and that you took the time to answer. I am going to call him if it happens tonight. I am havng my port our tomorrow and I'm very anxious about that. I have asked my Dr if he thinks I can wait till next Sept(1 year) to have anothere PET scan if my blood tests and physicals are good. He says yes. The Dr at Moffet in Tampa told me PET scans are mostly for the patient. A Dr can tell what he needs to know from a blood test and an exam. I hate second guessing everything. My Dr. is great. Have any of you had a Dr. say that about the PET scans. I know that they are not good for you either. This is a hard road. My husband just hugged me at 4 this morning when I started crying over having a small night sweat. He is so patient.
  • catwink22
    catwink22 Member Posts: 281
    JoanieP said:

    Thanks
    I appreciate what you said and that you took the time to answer. I am going to call him if it happens tonight. I am havng my port our tomorrow and I'm very anxious about that. I have asked my Dr if he thinks I can wait till next Sept(1 year) to have anothere PET scan if my blood tests and physicals are good. He says yes. The Dr at Moffet in Tampa told me PET scans are mostly for the patient. A Dr can tell what he needs to know from a blood test and an exam. I hate second guessing everything. My Dr. is great. Have any of you had a Dr. say that about the PET scans. I know that they are not good for you either. This is a hard road. My husband just hugged me at 4 this morning when I started crying over having a small night sweat. He is so patient.

    Hugs too
    Joanie, I have to disagree with your Dr.-IN MY CASE. Maybe your diagnosis is trackable through blood work? I have a spot on my hip that was found by the PET scan that they believe is also lymphoma. My blood work is fine and I had no symptoms. I will have results of bone biopsy on Fri to be sure. I don't want to shake your confidence in your doctor it's very important to have that trust, but blood tests and exams don't tell the WHOLE picture. They might give you a clue, but they might not (like in my case). PET scans have the same radiation as a CAT scan which are low if that's what you're concerned about. It's all about what YOU are comfortable with, for me I want to use every tool available so I'm as sure as I can be that nothing's being missed. I'm so happy for you that you have a great hubby! I'm sending you hugs too! Good Luck and be strong!
  • JoanieP
    JoanieP Member Posts: 573
    catwink22 said:

    Hugs too
    Joanie, I have to disagree with your Dr.-IN MY CASE. Maybe your diagnosis is trackable through blood work? I have a spot on my hip that was found by the PET scan that they believe is also lymphoma. My blood work is fine and I had no symptoms. I will have results of bone biopsy on Fri to be sure. I don't want to shake your confidence in your doctor it's very important to have that trust, but blood tests and exams don't tell the WHOLE picture. They might give you a clue, but they might not (like in my case). PET scans have the same radiation as a CAT scan which are low if that's what you're concerned about. It's all about what YOU are comfortable with, for me I want to use every tool available so I'm as sure as I can be that nothing's being missed. I'm so happy for you that you have a great hubby! I'm sending you hugs too! Good Luck and be strong!

    so confusing
    You hear so many things. The Dr who is a research Dr at Moffit in Tampa who specializes in foliicular lymphoma told me that about PET scans. I agree I would like to have one every 3 to 6 months but I also heard that your blood and a physical exam is a good indication. Beleve me , I appreciate your advice and will talk to the Dr before my next Rituxin treatment on the 14th of April. Do ou have follicular lymphoma. I always heard it was a 60 year old disease but you look half that age.
  • winthefight
    winthefight Member Posts: 162
    JoanieP said:

    so confusing
    You hear so many things. The Dr who is a research Dr at Moffit in Tampa who specializes in foliicular lymphoma told me that about PET scans. I agree I would like to have one every 3 to 6 months but I also heard that your blood and a physical exam is a good indication. Beleve me , I appreciate your advice and will talk to the Dr before my next Rituxin treatment on the 14th of April. Do ou have follicular lymphoma. I always heard it was a 60 year old disease but you look half that age.

    Hi Joanie
    So sorry to hear about the night sweats. No, you are not crazy. Many of us have concerns when we experience symptoms that we think are "cancer". I too am having night sweats and am concerned about it. At the same time, it could be hot flashes. I'm not sure of your age, but for me....chemo pushed me into menopause early. My Onc has told me on occasions that the sweating comes from menopause.

    I have to agree with the other writer about scans and blood tests. I actually detected my recurrence after feeling a knot....my Oncol felt it and said he thought it was scar tissue. Mind you, I was seeing the Dr every week....getting blood tests every week. I requested a scan. The scans returned. The lymphoma returned. Had I not requested the scan at that moment, who knows???? But, I am glad I took the lead on that one.

    So I am sharing this not to scare you, but to help you understand you have the right to take the lead on this. Dr.s don't know everything, even as good as they are....I would ask for a scan. A year from now, may cause you to have to do extreme chemo later down the line, as appose to perhaps 1 round of Rituxin (which is very mild)if something is going on.

    I hope this helps and I look fwd in hearing your update.

    God bless you.
  • catwink22
    catwink22 Member Posts: 281
    JoanieP said:

    so confusing
    You hear so many things. The Dr who is a research Dr at Moffit in Tampa who specializes in foliicular lymphoma told me that about PET scans. I agree I would like to have one every 3 to 6 months but I also heard that your blood and a physical exam is a good indication. Beleve me , I appreciate your advice and will talk to the Dr before my next Rituxin treatment on the 14th of April. Do ou have follicular lymphoma. I always heard it was a 60 year old disease but you look half that age.

    Thank you
    Hee hee! No, not quite half that age, but thank you! On a more serious note, I am well into my 40's (that's my granddaughter in my pic) and I do have follicular but they think I have had this for many years before it reared it's ugly head so I may have been in my thirties and undiagnosed. Cancer has no age requirements. Ask lots of questions and stick to your gut feeling, you know yourself best.
    Good Luck Joanie!
  • dixiegirl
    dixiegirl Member Posts: 1,043
    Rituxan Only
    Hi Cat.

    My name is Beth and I have recently been doing Rituxan only for my 3rd recurrance. When I started this cancer trip I was stage 1 low grade Malt lymphoma. At the time I did CVP+Rituxan with rituxan maintenance for a while. My relapse was in my left hip area and we did watch and wait for about 9 months, then treated that with radiation. In January of this year I had a drenching nightsweat and my doc sent me for a pet scan. I am now stage 3 follicular lymphoma. I did 4 weeks of rituxan only and getting ready to start maintenance April 1st, with another pet scan coming up in June to see if it's working.

    My big problem now is I have a "insufficiency fracture" in my hip/pelvis area. My onc says it's caused from my radiation treatments in 2007, where it weakened the bone. This has been hard for me and it REALLY stinks when you can't walk very well. I am 45 years old and walk like a little old woman. It'll heal on it's own over time, but talk about being impatient! When I go back in april he's going to add reclast to my treatment and I hope it helps speed up the healing LOL. Chemo threw me into early menopause also and this is something I guess that goes along with it.

    Trust your doc, but more importantly trust yourself! I found all 3 of my occurances basically. I found the lumps the first time, told my doc I just felt like I did before with the second relapse and found it by pet scan. This time the nightsweat and weightloss was all I needed. My blood work has all been good, but I am finding with time that I know what my body is telling me.

    I hope you get great results, and pray it's not in your bones, as I fear that is maybe what's happening with my hip. He mentioned possibly sending me for another bone scan and mri soon to check my hip, hopefully sooner than later I'd like to know this pain will go away soon. Heating pad and aleve are about the only things that help and the occasional pain pill, but summer is coming and with menopause so does the hot flashes so I am sure the heat is going to be an irritant :)

    Take care,
    Beth
  • yesyes2
    yesyes2 Member Posts: 591
    dixiegirl said:

    Rituxan Only
    Hi Cat.

    My name is Beth and I have recently been doing Rituxan only for my 3rd recurrance. When I started this cancer trip I was stage 1 low grade Malt lymphoma. At the time I did CVP+Rituxan with rituxan maintenance for a while. My relapse was in my left hip area and we did watch and wait for about 9 months, then treated that with radiation. In January of this year I had a drenching nightsweat and my doc sent me for a pet scan. I am now stage 3 follicular lymphoma. I did 4 weeks of rituxan only and getting ready to start maintenance April 1st, with another pet scan coming up in June to see if it's working.

    My big problem now is I have a "insufficiency fracture" in my hip/pelvis area. My onc says it's caused from my radiation treatments in 2007, where it weakened the bone. This has been hard for me and it REALLY stinks when you can't walk very well. I am 45 years old and walk like a little old woman. It'll heal on it's own over time, but talk about being impatient! When I go back in april he's going to add reclast to my treatment and I hope it helps speed up the healing LOL. Chemo threw me into early menopause also and this is something I guess that goes along with it.

    Trust your doc, but more importantly trust yourself! I found all 3 of my occurances basically. I found the lumps the first time, told my doc I just felt like I did before with the second relapse and found it by pet scan. This time the nightsweat and weightloss was all I needed. My blood work has all been good, but I am finding with time that I know what my body is telling me.

    I hope you get great results, and pray it's not in your bones, as I fear that is maybe what's happening with my hip. He mentioned possibly sending me for another bone scan and mri soon to check my hip, hopefully sooner than later I'd like to know this pain will go away soon. Heating pad and aleve are about the only things that help and the occasional pain pill, but summer is coming and with menopause so does the hot flashes so I am sure the heat is going to be an irritant :)

    Take care,
    Beth

    Hip pain & Radiation
    Hi Beth,

    I am so sorry to read about your hip pain. It sounds terribly uncomfortable. As someone who has had radiation treatments for breast cancer 17 years ago I know that radiation is the gift that keeps on giving. It impacts my life daily with pain, changes to my lung and other problems, and will for the rest of my life. I've told my doctors early on that I will not do radiation for my NHL, not ever. But who really know if I would.

    I'm glad that your doctor says that the insufficency fracture will heal on it's own. That is very good news.

    Hang in there and take care.
    Leslie
  • yesyes2
    yesyes2 Member Posts: 591
    catwink22 said:

    Thank you
    Hee hee! No, not quite half that age, but thank you! On a more serious note, I am well into my 40's (that's my granddaughter in my pic) and I do have follicular but they think I have had this for many years before it reared it's ugly head so I may have been in my thirties and undiagnosed. Cancer has no age requirements. Ask lots of questions and stick to your gut feeling, you know yourself best.
    Good Luck Joanie!

    Bone Biopsy
    Hi Joanie,

    Thinking of you and wondering if you have gotten the results of your bone biopsy yet? please post and let us know how you are doing.

    Good luck,
    Leslie
  • yesyes2
    yesyes2 Member Posts: 591
    yesyes2 said:

    Bone Biopsy
    Hi Joanie,

    Thinking of you and wondering if you have gotten the results of your bone biopsy yet? please post and let us know how you are doing.

    Good luck,
    Leslie

    Oops, bone biopsy
    Oops, meant the above post for catwink. But Joanie let us know how your doing too.
    Leslie
  • mikeheadfl
    mikeheadfl Member Posts: 6
    Rituxan only
    I was diagnosed in July 09, with stage 2 indolent follicular B cell NHL. I had the 4 Rituxan infusions. My nodes in my neck were back to normal for 4 months. I knew when they started to grow again. I start Chop-R for 6 treatments on Friday. I just had my power port put in. I am very uneasy at this time. My cancer is now aggresive. I am 60 years old.I am hoping for the best. Please remember that everyone responds differently. I had no side effects from the rituxan.I took 1000cc's at a time. That is 1 leter. 87% drug 13% saline. Good luck.
  • catwink22
    catwink22 Member Posts: 281

    Rituxan only
    I was diagnosed in July 09, with stage 2 indolent follicular B cell NHL. I had the 4 Rituxan infusions. My nodes in my neck were back to normal for 4 months. I knew when they started to grow again. I start Chop-R for 6 treatments on Friday. I just had my power port put in. I am very uneasy at this time. My cancer is now aggresive. I am 60 years old.I am hoping for the best. Please remember that everyone responds differently. I had no side effects from the rituxan.I took 1000cc's at a time. That is 1 leter. 87% drug 13% saline. Good luck.

    Thank you all!
    Thank you everyone for responding, I didn't see these until today. My hip bone biopsy didn't get any real result. I do have lymphoma there, but they think it's only on the surface. (I know what you mean about walking like you're 90, I'm only now able to walk normally after 2 months.) I just finished the 4 Rituxan treatments which went really well except the 1st dose I did have an allergic reaction. I won't know if it worked until July when I have a PET. The node in my neck doesn't feel as if it's gone down much, but it's the spot on my hip that they're most concerned about so I hope it worked there at least. Wishing you all well in your journey, Good Luck to everyone!
  • JoanieP
    JoanieP Member Posts: 573
    yesyes2 said:

    Oops, bone biopsy
    Oops, meant the above post for catwink. But Joanie let us know how your doing too.
    Leslie

    Thaks Leslie
    I am doing well. The antidepressant has almost wiped out the warm flashes. I am too old for menapause:) I haven't been on in awhile. I have been so busy at school. My fifth graders are so hormonal and I am ready for the school year to be over. I feel like I know bluerose, catwink,Mary and you. Too bad we can't all just sit down and visit in person.
  • JoanieP
    JoanieP Member Posts: 573
    catwink22 said:

    Thank you all!
    Thank you everyone for responding, I didn't see these until today. My hip bone biopsy didn't get any real result. I do have lymphoma there, but they think it's only on the surface. (I know what you mean about walking like you're 90, I'm only now able to walk normally after 2 months.) I just finished the 4 Rituxan treatments which went really well except the 1st dose I did have an allergic reaction. I won't know if it worked until July when I have a PET. The node in my neck doesn't feel as if it's gone down much, but it's the spot on my hip that they're most concerned about so I hope it worked there at least. Wishing you all well in your journey, Good Luck to everyone!

    Sorry to hear
    I'm sorry Catwink that you are having trouble walking. I'm thinking of you and praying you are better soon.
  • dixiegirl
    dixiegirl Member Posts: 1,043
    yesyes2 said:

    Hip pain & Radiation
    Hi Beth,

    I am so sorry to read about your hip pain. It sounds terribly uncomfortable. As someone who has had radiation treatments for breast cancer 17 years ago I know that radiation is the gift that keeps on giving. It impacts my life daily with pain, changes to my lung and other problems, and will for the rest of my life. I've told my doctors early on that I will not do radiation for my NHL, not ever. But who really know if I would.

    I'm glad that your doctor says that the insufficency fracture will heal on it's own. That is very good news.

    Hang in there and take care.
    Leslie

    Radiation
    I do have to admit, the rads to my hip did kill the cancer there and it hasn't come back at least in that spot....I just wish it didn't come with forever changes :)
  • lvraider
    lvraider Member Posts: 5
    Rituxan only
    I tried Rituxan 8-doses, but added 8-velcade(bortezomib) neither worked, on NHL gastric heavy involvement. I had radiation which then put me into remission.