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Rituxan Monotherapy Frontline

GKH
Posts: 288
Joined: Jul 2012

I am very interested in talking to someone who has Rituxan monotherapy as their initial treatment for Non Hodgkins Follicular Lymphoma. Seems to be working for me. However my therapy for Stage 4 NHFL has been very intense. I had 8 weekly infusions to start vs the more talked about 4. My maintenance is one infusion every 8 weeks vs the more common every six month cycle. My dose is 800mg per visit. This is supposedly the European treatment model. I am wondering if anyone else on this board has had that much Rituxan over such a short time? It seems to be working fine as I had a "total response". Total Response does not mean cured or even symptom free. I recommend it for those who are candidates (low tumor burden, treatment naive) because its not nearly as traumatic as the more aggressive therapies. However I think there are several side-effects that are unpleasant. For me its muscle and joint pain. Doc says it may or may not be the Rituxan. Since my lab work says my B-cells in the bone marrow are "virtually undetectable", I am trying to be careful about infections. To date everything has gone well. Sharing your knowledge and/or experiences would be appreciated.

GKH

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

Hi GKH,

I had Rituxan as my initial and only treatment for Stage 3 NHFL. I too have had great results with little side effects. I had a reaction on my initial treatment, but after that most of the side effects were from the Decadron (steroid). I started my treatment in April 2009 with the more common, once a week, for four weeks, every six months. I like to think that I'm educating myself on all this, so I'm a little embarrassed to say that I don't know what my dosage was, never really thought to ask because I knew so little about it to begin with. I had my last treatment in November 2011, and my scans are all clear. (BMB came back clear on diagnosis.) I also would recommend this treatment to anyone who is considering it as an option. Great to hear that you are doing well! Wish us all continued success!

Cat

GKH
Posts: 288
Joined: Jul 2012

And I am very encouraged that you are doing so well!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1002
Joined: May 2012

GKH,

I did 12 cycles of rituxan, but WITH abvd. By itself, rituxan is almost universally considered a very mild treatment in terms of side-effects, and it does not cause the patient to morph into other lymphomas or leukemia, the way some other chemo combinations can (at least I have never heard of this being a risk at all with it).

I had bad muscle pain for the six months I was on treatment, but there is no way of knowing whether the rituxan caused it, or one of the other four meds that I got, since at least two of them also can cause muscle pain and flu-like symptoms.

Two or three people on line here recently were discussing rituxan-only therapies, and they will hopefully chime inn.

max

GKH
Posts: 288
Joined: Jul 2012

Thanks for sharing your experience. Yes, in many ways Rituxan is very mild side effects for most people. Some others die from it. I am concerned about infections due to depletion of B cells. I guess another concern is the large amount I am receiving. It could lead to heart valve issues. I will be receiving 22 800-mg infusions over 2 years. All told I think its the best alternative for me at this point. Just want to know what to look for in terms of side effects.

People on here are inspiring. I feel fortunate.

Garry

Avantgardener's picture
Avantgardener
Posts: 31
Joined: Apr 2012

Hi, GKH.

I was diagnosed in April of this year with stage 4 low grade marginal zone spenlic lymphoma - from what I understand, this is very similar to what you have, and the treatments are virtually the same. In both types, there is a production problem with B cells. In my case, I also have an autoimmune disorder called ITP, which interprets B cells and foreign bodies and destroys them. So, I have problems with both production of B cells and with maintaining the few that my body actually does make. At the time of my diagnosis, my platelet count was 18, and my bone marrow consisted of 85% lymphoma cells.

The standard treatment for what I have would be R-CHOP, which essentially takes your immune system down to zero and then re-boots it, for lack of a better way to describe it. In my case, that's not an option, because with the ITP there's a good chance that they wouldn't be able to start up B cell production again. Not good. So! After high dose prednisone (100 mg/day for a month) did nothing, the doctor recommended Rituxan by itself.

I had 500 mg. of Rituxan once per week for 8 weeks. I had a reaction to it just once, and it wasn't serious - hot flushing and stomach cramps that went away when they gave me Dilaudid. The standard dose seems to be 375 mg., but I remember reading at the time that there is as yet no determination of a maximum dose toxicity level. That's why Rituxan can be repeated later if needed, which is good to know.

I have to say that the Rituxan seems to have done its job, at least for now. My platelets are stable in around the 100-120 range, red blood cells and hematocrit are into normal ranges, and white blood cells are still low, but slowing climbing. I feel well. Nobody knows what the long term prognosis is, with the ITP thrown into the mix, but at this point my biggest problem is a summer cold that hasn't got the word that it's fall already and time to clear out.

All the best to you with your treatment, and I hope that your results are as good as mine have been.

1ladydiamond
Posts: 28
Joined: Oct 2012

Hi i started treatment in April it was every week i couldn't take the full dose i had bad reactions to it in the beginning so steroids etc was introduced with it. Now i am up to 600 and in July started every month and now it is every 8wks I have stage 4 i am told i will never get out of stage 4 but it has scaled back alot feeling better still tired and i get sick right after treatment shaky and somewhat sick last about a couple of days unless i catch a virus or cold which hits me hard after treatment time.
Patricia

GKH
Posts: 288
Joined: Jul 2012

Sounds very similar. So far I have avoided the infections. I believe that the way Rituxan works is to totally kill as many mautre B cells as possible. It does not affect B cell production so B cells get back to normal in about 1 year after finishing R. Very happy you are feeling better.
Garry

1ladydiamond
Posts: 28
Joined: Oct 2012

The side effects is heart issues and bone and joints issues. But to me it is worth the risk and with every medicine as intense as this there are some down sides but the up side is so much more. Wishing you the best

GKH
Posts: 288
Joined: Jul 2012

Many seem to have little or no side effects but not me. I am having lots of pain, fatigue and night sweats.

Garry

1ladydiamond
Posts: 28
Joined: Oct 2012

Hi GKH i am having the same tired a lot still and hot flashes can't sleep Pain in joints etc. My doctor told me i should not be having this and it maybe something else but i told him each person is different don't lump everyone into one. Each person experiences different symptoms i am sorry your experiencing this but for me i know it isn't in my head and the fact that your experiencing these also confirms this. Just because others don't doesn't mean some of us are not either. I have knee pain the joints etc are effected from the treatment. When i have talked to others with the same treatment they told me they never and have not experienced any of these symptoms. I hope I can stay in touch with you because you would understand and so would i and we can share anything that may help with these. Thank you so much.
Trisha

1ladydiamond
Posts: 28
Joined: Oct 2012

Hi i would love to stay in touch so I can ask you questions about what i am experiencing and is what your experiencing i have no one else that can relate you can reach me first_ladydiamond at yahoo. Wishing you nothing but the best. I hope you start to feel better some relief from these symptoms
Trisha.

GKH
Posts: 288
Joined: Jul 2012

I think it would be good for both of us. Is there some way we can exchange emails in private? BTW I live in Virginia.

1ladydiamond
Posts: 28
Joined: Oct 2012

Hi Garry please check your in box it is on the home page talk to your soon.
Trisha

1ladydiamond
Posts: 28
Joined: Oct 2012

B12 2500 milgrams and and vitamin energy pills help me

1ladydiamond
Posts: 28
Joined: Oct 2012

I juice and take vitamins

miss maggie
Posts: 929
Joined: Mar 2010

Dear GKH,

I was dx in Sept 2009 when my small bowel perforated. I was rushed into surgery after having a CT scan showing the perforation. I was dx with marginal, stage 1, low grade B cell NHL. Perhaps the surgery removed some or all of the cancer? I had a bone marrow biopsy in Oct 2009 which was negative for cancer. Anyway, In Dec 2009 I was
treated with Rituxan, once weekly for 4 weeks. This is the only treatment I had. I have been in remission for 2 years.

I was told by my oncologist the cancer could never return, or if it did, I would be treated
again with Rituxan. I believe my dx is considered indolent. Therfore, it is written, it might return.

I try and not worry in between visits with my oncologist. My next appointment is in Feb 2013. That's when my worry starts all over again.

Please if you can, accept your remission and enjoy. Hugs Maggie

GKH
Posts: 288
Joined: Jul 2012

Thanks Maggie.

Garry

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