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Rituxan only

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

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!

yesyes2
Posts: 461
Joined: Jul 2009

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
Posts: 929
Joined: Mar 2010

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's picture
catwink22
Posts: 239
Joined: Sep 2009

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's picture
JoanieP
Posts: 573
Joined: Mar 2010

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's picture
catwink22
Posts: 239
Joined: Sep 2009

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's picture
JoanieP
Posts: 573
Joined: Mar 2010

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's picture
catwink22
Posts: 239
Joined: Sep 2009

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's picture
JoanieP
Posts: 573
Joined: Mar 2010

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's picture
winthefight
Posts: 162
Joined: Dec 2007

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's picture
catwink22
Posts: 239
Joined: Sep 2009

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!

yesyes2
Posts: 461
Joined: Jul 2009

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
Posts: 461
Joined: Jul 2009

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

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

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.

GKH
Posts: 292
Joined: Jul 2012

Night sweats are considered B symptoms and are unusual for indolent forms. However I have indolent FNHL and occasionally get night sweats. The problem with a "small" nightsweat is everybody has them and there can be many causes. Sometimes you are just hot or stressed. Get it checked out but don't worry prematurely. This is the new normal.

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

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
Posts: 461
Joined: Jul 2009

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

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

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 :)

bk1950
Posts: 43
Joined: Apr 2009

hello dixiegirl, i have a question about your cvp and rituxan treatment you first had. i also had the same treatment for 7 rounds ending last feb. the question is, did you loose your hair and get sick from the ttreatment? i did not. the only thing i felt was tired and ached alot in my legs. i will start 4 rituxan treatments the end of this month for maintance. my follicular lymphoma is in my abdomen and is almost gone. the word "almost" concerns me. was yours completely gone? good luck to you, take care. bk1950

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

The first time when I did the CVP+R I did lose my hair, from the chemo only. I have never been sick or lost hair from rituxan only. I get kind of tired for a day or so after but that's about the only thing.

This last time doing only rituxan once a week for 4 weeks and every other month maint, mine is also almost gone. Pretty much gone in the armpit and spine area and reduced intensity on the spot in the lung. My onc tells me anything under a 2 suv on the pet scans they just watch and I am at 1.7 so they don't worry about it too much. I did ask my onc when he'd o another scan, and he said when I tell him I don't feel so good because I know my body and tell him when it happens. I was kind of disappointed when it wasn't completely gone though I admit.

I think there will always be "some" level of disease that stays active, at least that's what my brain tells me....I haven't asked my doctor cause I think I'm afraid to :)
With time I am getting more comfortable, but I have bad days too. I hope you are doing well and everything is behaving!

mikeheadfl
Posts: 6
Joined: Apr 2010

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's picture
catwink22
Posts: 239
Joined: Sep 2009

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's picture
JoanieP
Posts: 573
Joined: Mar 2010

I'm sorry Catwink that you are having trouble walking. I'm thinking of you and praying you are better soon.

redlynn
Posts: 2
Joined: May 2010

I was diagnosed with Mantle cell lymphoma in June of 08 after discovering a lump in my armpit. Through testing they also discovered some of the mantle cells in my bone marrow. Because I was pretty much symptom free we decided to take the Watch and Wait approach. My oncologist consulted with Lance Armstrong's oncologist and this is what he also recommended.

Through CAT scans over the next year more and more of my lymph nodes were showing signs of the cancer cells so in June of 09 I started taking Rituxen, 4weeks on, 4-off, then four more treatments. I had great results from the treatment that regular Cat Scans proved.

At the beginning of 2010 I started having alot of difficulty with constipation so we scheduled a colonoscopy--which I was due for anyway. Three weeks ago I received the result and they discovered that my lymph nodes through out my colon were swelling and a large mass was found in my rectum, also a result of the mantle cell. Of course my first thought was this was a death sentence for me and felt that we needed to do whatever needed to stop or remove the cancer. Mantle cell is a blood cancer that spreads through out the lymph system so it does not do much good to start removing every part of your body that is affected by it. In fact, my doctor feels that my spleen in also involved.

The puzzeling part to me is that we are continuing with the Rituxen. As of today I finished my second session and will have three more. My doctor feels that we had great results from in before and he would rather but me through these treatment before moving to something more drastic. I am to this day still relatively symptom free, I don't have night sweats and I'm definately not losing any weight!

I guess my reason for finally deciding to join a forum is that I would like to learn from others as to what point one should take more of an aggressive approach. Some of the forums I have been reading regarding mantle cell is that most people are being treated more aggressively even to the point of stem cell transplant. What symptoms were you having? Does anyone else have close to my degree of the disease and are you still on Rituxen? Before this latest development with my colon and rectum I was at a stage IV.

Thank you for listening!

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hi Redlynn,
I'm sorry for your additional diagnosis, it's enough to deal with one. This is a puzzling scenario. Have you had a PET scan? If you did why wasn't it able to pick up the lymph nodes in your colon and activity in your spleen? If you haven't maybe you should request one? If the Rituxan is controlling your lymphoma than it's probably better than using the more potent treatments that wreak havoc on your body. I am no longer on Rituxan, I don't know if it has worked yet (I go for my PET in July), but I do feel better and I'm not losing any weight either! Gaining lots actually lol. When should you be more aggressive? What a great question! I just don't think there is an easy answer. The treatments don't always do the same things in different people. I'm HOPING that the doctors know the answer to that question from their knowledge and experience in dealing with these issues. We're here to listen and support when we can. Good Luck with the Rituxan, I hope it works!
Cat

onlytoday's picture
onlytoday
Posts: 586
Joined: Jun 2010

I have a question for all of you that have had Rituxan only. If you were offered that option again (knowing what you know now) would you go with it? I know that some have had success with it and others have had reoccurances rather quickly. I have two opinions from two fine insitutions and one option is Rituxan only. The other institution said that if there is bone marrow involvement with ANY indolent lymphoma that you then need chemo and not just rituxan.( My NHL is in my bone marrow)

Also, a previous post talked about PET scans being more for the patient and that is exactly what my two doctors have said. Indolent lymphoma may not show on a PET scan but may show on CAT or MRI. They diagnosed me finally with a lymph node excision and blood work results.( as well as symptoms)I dont expect a PET scan to be used again unless they suspect tht the cancer has turned agressive which makes it visable on the PET once its active.(per my docs)

Thanks everyone and my best to you all!

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hi Today,
I haven't had my scan yet so I don't know if I would do it again. I'm scheduled for Aug, but I'm sure you will need to decide before that. I do not have NHL in my marrow, but it has spread to my hip bone(makes me stage 4, grade 2). What I find to be bizzare is the difference of opinions on the PET. How do they know if it has become aggressive or if the treatment has worked if they don't have anything to look at or compare? I had a CAT scan too, but only the PET picked up the spot on my hip. I've never had any symptoms except the swollen node on my collar bone and my blood work has always come back normal even now. It's so conflicting and confusing I just don't get it. Maybe like everything else it's on a case by case basis?? I'm sorry I don't think I helped you with your decision, but I wish you the best of luck with it! Cat

niborskram
Posts: 1
Joined: Jul 2010

I was diagnosed 11/09 with Non-Hodgkins Lymphoma, stage 1. My doctor had me do four treatments of Rituxan over one month. It seems to have caused the tumor to shrink slightly and has not gotten any bigger at this time. We are in a watch and wait mode now, I go back for another CTscan in four months. Chemo scares me so if he told me I could take Rituxan indefinitely, I would.

How do you all cope with the fear and the unknown? Some nights I don't sleep at all. I need some hints.
Thanks

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I'm sorry you are on this road with the rest of us, but Thank God you are here......stage 1 woo hoo!! I also began this struggle at stage 1, however I was having b symptoms and started with chemo and rituxan.

I was TERRIFIED, no other term comes close to the emotions going through my body and mind. Sleep was fitful at best and sometimes it would get to complete exhaustion before I got any rest. Benedryl at night helps knock you out....you HAVE to rest sometimes. If it gets to be too much, talk to your onc about anxiety meds....there is NO SHAME in saying I need help with this.

All I can say is I spent a huge amount of time here both in discussion groups and chat rooms talking with other survivors. It gets easier with time although the stress of having cancer never completely goes away. Should it come down to chemo time, it's ok and it truly IS doable. It's not fun, but you can do this.

I wish you the best of luck and hope your watch and wait lasts a really long time :)

Take care,

Beth

lvraider
Posts: 5
Joined: May 2010

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.

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Thanks for your post Ivraider, because when I go for my scan in July if the spot on my hip has not gone down far enough in intensity my onc mentioned hitting it with radiation. I kind of gulped and figured I'd cross that bridge if and when I get there. It's definitely a reassurance to hear that it worked for you.

Thanks too Joanie for your concern on my walking, I am doing much better only a slight limp on certain days that I think I do too much.

Jilliankay
Posts: 2
Joined: Sep 2013

Hello,My 85 year old grandmother was recently diagnosed with Diffuse Large B Cell Lymphoma.  She is elderly and weak so chemo is out of the question.  We were given the option of Rituxan only treatment. Although the side effects are very different then with chemo and seemingly less severe we are still very concerned about them.  I was hoping for some feedback from anyone who has had Retuxan only treatment about the side effects.  What you experienced, how bad they were and how the risks were presented to you when you were given this option.  We are well aware that this will not be a full cure for her but the risks and side effects have been explained to us by multiple doctors who all make them sound so different I would like some information from People who have actually been through it before making a final decision.  Thank you so much, Jillian

Jace974's picture
Jace974
Posts: 14
Joined: Sep 2013

Hey Jillian, I am no expert by any means, brand new here myself but I just took my fourth rituxan (3 with chemo , one without.) and I think rituxan alone is fairly safe with almost no side effects and does the job for awhile at least. I am not sure about her age and rituxan if that makes any difference. Curious to know. Good luck, Wish your Grandmother the best !

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1045
Joined: May 2012

Jillian,

Several of your questions are addressed above on this thread, which is about three years old.  You may want to start at the top and go through all of the posts, if you did not already.  While I never took Rituxan by itself, I will submit what I know, and perhaps get the discussion going again.

What I did take was a combo known as R-ABVD, the standard first-line treatment for most HLs.  My first bag on infusion day was always the Rituxan.  If she receives full-dose, it is a long bag, and most people say their's runs about 3 hours.  Mine averaged about that length also.  On her first infusion, they will start the drip very slowly, watching for allergic reactions, which are fairly uncommon.   Benadryl is usually given first, as a precaution against such possible allergic effects, and this may cause her to doze off asleep for a while (it always put me to sleep).  If she handles the first infusion ok, most clinics will speed up subsequent infusions, but it will probably always take at least 2.5 hours, if not more.   A pretty common effect during infusion itself is feeling chilled, and it caused me to need a blanket.

Probably the most common side-effect of Rituxan is muscle cramps and muscle/bone pain.  It commonly feels about like the flu.  Since I had two other drugs that also cause flu-like symptoms, I cannot say exactly how much of my pain was from the Rituxan verses other drugs, but I felt like I had the flu for six months, the whole time I was on chemo. I took Loritab the whole six months -- nothing less would touch it, but I was in pretty rough shape overall. In other words, the pain can potentially be substantial.   Fortunately, some people do not report this pain.  Another common effect is fatigue, which is common to almost every chemotherapy drug anyway.  I slept about 17 hours per day for the half-year period of treatment also, but again, I was very, very sick. I could not walk more than about 50 feet, maximum (I was 53 at the time).

Rituxan, as you were told, is way milder than most conventional chemos, and it does not cause hair loss. It also does not routinely cause neuropathy (numbness in the hands and feet).  Even nausea is uncommon with it.  Rituxan is a routine drug for inflammatory arthritis patients, although the arthritis dose is substantially lower than the dose used for chemo.   I have a friend (no cancer) who has been taking the drug for her arthritis for several years now.

The links below should be helpful. 

Regarding Rituxan in general:

http://chemocare.com/chemotherapy/drug-info/Rituxan.aspx

Reegarding "Flulike-Syndrome" :

 http://chemocare.com/chemotherapy/side-effects/flulike-syndrome.aspx

 

Bless the both of you,

max

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