CSN Login
Members Online: 10

Advice/opinion

Dsgranni
Posts: 9
Joined: Aug 2012

Just diagnosed with stage 3, low grade follicular lymphoma with clean bone marrow. As of now, the projected plan of treatment is Rituxan. Research is frightening. Any comments/advice from personal or known experience with this infusion drug?

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hi, I had bone marrow involvement but with Large B cell Lymphoma, stage 4, I received 8 cycles of Rituxan infusions. Compared to the Cysplaten chemo I received on my first cancer, it was a piece of cake. Ok maybe not a piece of cake, but for me it was much easier to handle. It does knock your white blood counts down, but it did not make me nauseous. You will be tired and worn down but all and all it is manageable. Good luck with your treatments.... Vinny

Dsgranni
Posts: 9
Joined: Aug 2012

Thanks for the info. Did your healthcare team assure you regarding Rituxan? I have not even been scheduled for the onset of treatment and have had no professional counselling on this drug, but my findings on personal research of the drug were frightening to say the least!!! I hope you are doing well now. Again, thanks for replying!

miss maggie
Posts: 929
Joined: Mar 2010

Hello,

I was dx with stage 1, low grade, marginal B cell NHL. Sept 2009. Not Follicular.

I was treated only with Rituxan, once weekly for 4 weeks in Dec 2009. I have been in
remission for 2 years. I just had a Pet CT scan last week. I will be seeing the doctor
tomorrow, Aug 6 to see the results. Hopefully still in remission. I had no problem
with the Rituxan treatment.

My bone marrow biopsy was negative for cancer also.

I hope this helps. Good luck and keep us informed. Maggie

Dsgranni
Posts: 9
Joined: Aug 2012

I truly hope your scan is clean. Thanks for the reply. Researching the drug really frightened me!!! I look forward to hearing good news from you!!!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

Dsgranni,

If you have ever driven I-95 across the SC-NC border, you know that there is a huge, Latino-themed business (I do not really know what to classify it as; it is part motel, part carnival, part truck stop, part fun park -- you name it) named "South of the Border." It is famous for humorous billboards extending for about 100 miles down the Interstate in both directions. One billboard reads, "Free Air, Water, and Advice." You will get free advice here !

Individual doctors and hospitals vary on their sort of "theoretical approach" regarding how to attack cancers. One is what you might call a "minimalist" view; use the fewest toxic drugs that will effectively kill the disease. Going with just rituxan is somewhat minimalist , but I like that viewpoint. If rituxan does not work OK by itself, things can always be ramped up shortly thereafter.

Rituxan, for most people, is both powerful but has fewer side-effects than most "combination" chemos that most people receive. If it ends up working for you, it will have been a great choice, with the least amount of agony in the process. Rituxan is also used for inflammatory forms of arthritis. The fact that it does not cause hair loss is a feature many patients love.

max

.

Dsgranni
Posts: 9
Joined: Aug 2012

Max,

For the last 8 years, my husband and I have lived on a small horse farm (ette) in SC and frequently travel northward "back home" through NC. Our destination is reached traversing I-77; however, we may just redirect via I-95 to visit what sounds like a fun experience at "South of the Border" - a dose of mental therapy!

I have been in the medical field for a few decades (and I am suspicious you may be medically educated as well) and, therefore, I am a horrible patient. I desperately try to behave for the sake of my healthcare providers as well as myself. Most often I am 90% successful. A minimalistic, aggressive approach to this malady would be my choice of treatment if, in fact, this combination is feasible.

Thank you so much for taking time to reply to my post and sharing with me regarding your knowledge of Rituxan.

Dsgranni

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

Dsgranni,

So a fellow Palmetto-Stater !

I grew up in Charleston and am a "Geechie", therefore. If you have visited the coast much, you know what I mean. (Well, except for Myrtle Beach, which is cultureless.) My aunt owned a large property in Georgetown (SC) where we spent a lot of summers, along the Black River, so I have had the full coastal experience (including Hurrican Hugo). I was in the navy several years, mostly in Groton, CT, at Sub School/Sub Base, and in Charleston. I told people "Join the Navy and see your home town," but I did get to Scotland several times. A lot of Ops were run out of Charleston, so it was fairly easy to get stationed there. We just did deployments to the arctic rim and under-ice. It was Cold War time, and we got the coldest of it all ! Mostly points well north of Norway. I received my Dolphin Pin standing on the ice at the North Pole.

My current pic is on the new Ravanel Bridge over Charleston Harbor. I had just got off chemo when the pic was taken, and I could only walk about 1/4 of the bike lane before giving out. We did make it to the first landing/ observation deck, where we took these. I had (have) a good many side-effects from abvd, which continue today. The worst is toxicity from bleomycine. It is untreatable, but it did not progress to fibrosis, and I am thankful. {Bleomycine has serious lung toxicity in 10% of all patients, and is fatal in 1%.} I tell people, and mean it, nonetheless, that "I would rather have side-effects than have cancer."

Umm-- "I-77 and Horses" says to me Camden-Lugoff, one of the most beautiful areas anywhere. I have relatives who owned horses off-and-on farther down in Lexington for many years. If you do ever get by South-of-the-Border, Pedro says the weather is "Chili today, hot Tamali." It is a garish place. If Wal-Mart built a tourist attraction, this would be it ! If you drive I-95 farther south into Lee County, you may see the Lizard Man (Where is he keeping Lizard Woman ?), but he has only been spotted at night (and after a lot of drinks, I suspect.)

I now live in the Upstate, which is pretty non-descript to me, but the Blue Ridge is beautiful.

I did 12 infusions of r-abvd. As I mntioned, if rituxan will do the job alone, it will be a blessing.

max

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Welcome Dsgranni. As you've already seen, lots of wonderful and supportive
folks on this site :).

It would help if you completed the Bio/"About Me" section so we have one place
to reference as far as your journey :).

The Internet is wonderful but please take what you research with a grain of salt.
You can drive yourself crazy reading this stuff and believe me, most all of us
here have done it. I say it so much but attitude and humor are free weapons in
this war. Anxiety is very normal now regarding your treatment. You'll find
that once you get a couple cycles completed, this will get better as you know
more what to expect.

I was treated with R-EPOCH - the "R" being Rituxan. It was administered once at
the beginning of my treatment cycle. I was fortunate that I didn't really have
any major reactions to it. Hopefully it will be the same for you.

Many of the nurses told me that patients sometimes have a reaction the very first
time (chills, aches, flu-like symptoms) and are fine after that. You will be
monitored closely and they will tweak things accordingly.

I hope everything goes well. You are always welcome here.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

Dsgranni
Posts: 9
Joined: Aug 2012

Jim,

You are 100% correct -- humor and attitude are key in a successful outcome, at least in the war against cancer. This is my third bout (don't believe anyone who says to you "third times the charm" - I don't feel very charmed.) None of the three are relative nor metastatic of the other. BUT I was very fortunate with my two previous bouts - DCIS right breast with bilateral mastectomies and minimal CA cells in a minute area of the endometrium found on hysterectomy. With the previous two cancer bouts, surgery was the only necessary treatment - no chemo or radiation was necessary. Hopefully, I will get a post on the Bio/About Me section at the end of the week (after my appointment with the surgeon :-( on Wednesday.).

I hope you are doing well. I will be anxious to read your bio. Please allow me to thank you for such an encouraging, heartfelt response. I look forward to "hearing" from you again soon!

Dsgranni

anliperez915's picture
anliperez915
Posts: 756
Joined: Sep 2011

Welcome Dsgranni,
Like Max said and the rest of my friends here at the site, Rituxan is a great drug with fewer side effects than the harsher treatments. My treatment consists of Rituxan once a week for four weeks and then rest for six months, I'm currently on my second round (only two more to go). It is working probably a little slower than I would have liked but nonetheless as long as I'm seeing results I'm happy with it. On my first round in Feb I did experience a few reactions but were taking care of by my nurse and Onc. On this round I haven't experienced any real problems only muscle pain, fever, and fatigue. My dx is different than yours its Splenic Marginal Zone Lymphoma stage 4 with tumors in spleen, liver and bone marrow involvement. On my last Ct scan some nodes changed and some didn't. Onc said that when I'm done with this round I will have another bone marrow biopsy to check if there is still cancer in the bone marrow. Welcome again and just ask away if you have more questions/doubts. Take care

Sincerely,
Liz

Dsgranni
Posts: 9
Joined: Aug 2012

Liz,

Thank you so much for taking time to respond to me when you, yourself, are in the midst of treatment. My heartfelt thoughts and prayers are with you. I will also be anxious to hear the results of your next BMB. We will trust that your study will be clean. When were you diagnosed, Liz? Are you satisfied with your oncologist and his/her team? This is my third visit from cancer - DCIS breast in 2003 and minimal show of cancerous cells in a minute portion of the endometrium on hysterectomy in 2009. None of the three were related nor metastatic, and no chemo or radiation were necessary for the first two, so I won't complain about 1 out of 3 ? But I would like to have a 3 for 3 record ;-)

Lia, thanks again for your quick reply. Know that you will be close in my heart and mind and that I am looking forward to your next post!

Dsgranni

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Hi Dsgranni,
Welcome to the group. I am currently doing the 2 year Rituxan maint infusions for Follicular NHL. I go in every other month...next infusion is on Aug 21st and then I'll only have 3 more to go. My last infusion will be on Feb 14th 2013. I have not had any serious problems with the Rituxan. My energy level is not as good as I'd like, but very doable. My shoulders ache and my knees and left hip hurt, but nothing so bad to require pain meds. All in all, I feel the Rituxan has been fairly easy to tolerate...much easier than my chemo cocktail..(6 rounds of CVP-R) prior to starting the R maint. My next scan will be in April of 2013, so we will know then if the Rituxan did it's job. Please come back and let us know how things go for you and also know we are here to help. Take care and best wishes...Sue
(Follicular NHL-stage3-grade2-typeA-Dx June 2010-age 61-considered stable)

Dsgranni
Posts: 9
Joined: Aug 2012

During infusion (first) on Thursday, had a bit of nausea and a few PVCs (skipped) beats at increased drip "rate". An hour after infusion was completed, I had flushing, chills, low grade fever (100) and achy feeling all over. By next morning, all symptoms had abated, but I was and still am dog tired. Is this typical Rituxan-based or do I have a case of unadulterated laziness?

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Hi Dsgranni,
No...you are not lazy :) Being tired is very normal. Your energy will slowly pick up, but don't push it...rest when your tired and listen to what your body is telling you. It's been 2 weeks since my R infusion and I'm still kind of tired. I've got 3 more to go and then I'll be done! "yeah" :) Thanks for checking in. Best wishes...Sue
(FNHL-2-3A-6/10)

Dsgranni
Posts: 9
Joined: Aug 2012

Thanks, Sue, for the quick and helpful response. This is a lonely place to be. I feel like the bus dropped me off in a strange town and everything is unfamiliar - make sense? I have spent over half of a century burning the candle at both ends and now find I have no wick left to burn. I had breast cancer in 2003. Mastectomies but no chemo or rad necessary. This time not as fortunate but will fight the good fight. It is so helpful to know what is normal and have an idea of what to expect. Now that I am couch-ridden for a bit, I will get my bio written. Thanks again for your response. I hope and pray you do well and will look forward to "hearing" from and about you soon!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

Dsgranni,

I never had any infusion issues, except chills. I did have constant muscle pain (it felt as bad as the flu) off and on for the whole six months, however. How much of that was the Rituxan, it is impossible to say, since I was also receiving the drugs abvd simultaneously.

I was massively tired all the time, not just around infusion. There was no "fighting" it, such that I slept most of the day and night (17-20 hours per day).

I hope the side-effects abate and you get some good results news soon.

max

Go_go_Gi_gi
Posts: 84
Joined: Aug 2011

Hi Dsgranni,

I was treated last year for follicular NHL--Bendamustine/Rituxan; 6 cycles, ending 12/15/2011. Currently on R-maintenance, every 8 weeks.

I was blessed to have only fatigue symptoms with the chemo. With the Rituxan, I have not noticed any side effects. Have my energy back---occasionally I have some aching in various muscles, and now am noticing pain in top of feet, with slight tingling/numbness of left great toe---have no idea if this is the R---or just age related, etc.

Life is good at present and I am blessed and grateful. Hope your Rituxan treatments continue without problems. My prayers are for you, strength, health, hope, survival, without complications.

Susan

po18guy
Posts: 245
Joined: Nov 2011

A tough decision to make, that is for sure. As concerning as the potential side effects of Rituxan are, I had to contemplate the combined side effects of Adriamycin, Vincristine, Etoposide, Cytoxan, Prednisone, Doxil, Vinorelbine and Gemcitabine. After a certain point, I would almost have taken my chances with the lymphoma! And, Istodax, the drug that I have received now for 3 1/2 years has potentially serious side effects, including changes in heart rhythm and fatal infections. However, other than some peripheral neuropathy, I seem to be no worse for the wear. And, I can claim chemo-brain in all cases of cognitive dysfunction!

Truthfully, my alternative to each of these, and all of them together, was to quickly become very sick and die of massive infection. Not my idea of an easy choice, but it was an easy choice to make. When your body is ablaze, the fact that the only water available is polluted does not matter as much.

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Welcome Dsgranni

I have not had Rituxan, so am not able to comment on that. But there is a wealth of information from fellow group members who have had it or are still receiving it.

This is a wonderful and very supportive group. Ask any questions you like. Someone will have an answer for you.

Looking forward to hearing from you again.

hugs
Lisha

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

I am currently doing Rituxan once a week for 4 weeks. It's doable, but beginning to get really tired. It's been a long battle for me and I am hoping this knocks it back, but honestly, I am very worried it's not working. Just a feeling at this point, nothing to back it up with. I just had my third treatment yesterday so the jitters at this point are normal.

Sorry, usually I am more positive. Stress really stinks.

Beth

GKH
Posts: 326
Joined: Jul 2012

Beth

Have you considered doing an 8-week initial treatment vs four weeks?

boy34
Posts: 20
Joined: Aug 2011

Hi,

I also have Follicular NHL Stage 3 Grade 1.5 and Clean Marrow. My Docs and I decided on NO TREATMENT and do the watch and wait approach. I'm glad we did because since then al my tumors have gone away. The pet scan proved it too. I also have no B symptoms. Do have be symptoms?

Chris

GKH
Posts: 326
Joined: Jul 2012

If it works for you then its definitely the easiest and best route to go. I had 8 wkly infusions and now on two year maintenance. So far it works. I would be happy to answer any specific questions about my experience.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network