Side effects-Rituxan?

I just wanted offer possibly another opinion..

I too have been on rituxan for almost 2 years Follicular non hodgkins IIIB (CVP+R) also was my frontline treatment and I gained 30 lbs. from that nasty prednisone.<---so glad that is over, now if i could just lose the weight

I experienced some lower back/hip pain for awhile, it was my body producing Red blood cells..You have to realize that those cells they destroy are produced in your femur, pelvis, vertebra, skull and scapula..Depending on where your tumors were, these parts of your body are working triple over time to produce healthy cells to replace all that were destroyed. Your will most likely feel more pain in those regions while your body plays catch up. The older you get the less bones produce red blood cells, which means some have to work extra hard. Since you were stage IV that means bone marrow was involved correct? which means you have to produce healthy marrow all over again. I know 3 years seems like a very long time, trust me I know. I too was ready to call it quits just a few months ago, but I only have a year left now. If you take a SUPER B vitamin regularly and try to keep active daily, I promise you will get your vigor back and those pains will soon be gone (almost overnight it seemed to me). Folic Acid also aids in cell development, which is why women attempting to get pregnant are urged to take it.

I know all too well that treatments can LITERALLY be a pain in the BUTT. I used to lay in my bed all day because I was so uncomfortable and even then I was uncomfortable in my bed too.

BEST WISHES TO YOU

XXXOOO

Carie

Hello,

I am in my second year of maintenance chemo with Rituxan. I now have treatments once every other month. My side effects are always vomitting, exhaustion, and I have had sore joints many times. My oncologist also told me this is not the norm but really there is no norm because every patient is so different therefore their responses are SO different. Sorry you feel so bad =[ It is not fair but you will get through it. My thoughts are with you and I am feeling the pain for you right now. By any chance did you get the neulasta shot before treatments???

girliefighter said:

Rituxan

I just wanted offer possibly another opinion..

I too have been on rituxan for almost 2 years Follicular non hodgkins IIIB (CVP+R) also was my frontline treatment and I gained 30 lbs. from that nasty prednisone.<---so glad that is over, now if i could just lose the weight

I experienced some lower back/hip pain for awhile, it was my body producing Red blood cells..You have to realize that those cells they destroy are produced in your femur, pelvis, vertebra, skull and scapula..Depending on where your tumors were, these parts of your body are working triple over time to produce healthy cells to replace all that were destroyed. Your will most likely feel more pain in those regions while your body plays catch up. The older you get the less bones produce red blood cells, which means some have to work extra hard. Since you were stage IV that means bone marrow was involved correct? which means you have to produce healthy marrow all over again. I know 3 years seems like a very long time, trust me I know. I too was ready to call it quits just a few months ago, but I only have a year left now. If you take a SUPER B vitamin regularly and try to keep active daily, I promise you will get your vigor back and those pains will soon be gone (almost overnight it seemed to me). Folic Acid also aids in cell development, which is why women attempting to get pregnant are urged to take it.

I know all too well that treatments can LITERALLY be a pain in the BUTT. I used to lay in my bed all day because I was so uncomfortable and even then I was uncomfortable in my bed too.

BEST WISHES TO YOU

XXXOOO

Carie

I gained exactly 30 from the prednisone too!! I am trying to lose the weight, it is so so hard!! I want my pre-cancer body back- I feel your pain.

ieI have MCL  and had Rituxan since the diagnosis , first with Betamustine for six months and now in remission so just Rituuxan every other month for last 12 months.I have those all over aches that are sometimes severe enough I'm glad I don't have a gun. I have found marijuana to be my only relief , and even with that  i sometimes struggle. My doctor has really no answer just tacit approval of my self treatment. He said there are so few MCL  patients it is hard to define side effects, but what is the alternative? I have considered stopping treatment I just don't know I'm 73 so at least I was able to have a full life before this , I feel bad for the younger people good luckt you all

shaysha said:

B Cell Follicular Stage 3 Rituxan & Bendamustine treatments

My spouse has just been diagnosed with cancer throughout his body. He is to start treatments this week, one day every 3 weeks for 6 months... rituxan and bendamustine. He also will have a ureter stent within the next two weeks. I am interested in hearing from others with similararities.... particularly about what to expect following his first treatment. Shaysha

 

 

I am so sorry you are in the position many of us have been in.  I also am my husband's caregiver (odd title to deal with huh?).   Let me assure you it is not as scary as it may seem to you right now.  I know exactly how you feel.  My husband has Mantle Cell Lymphoma and the common treatment is Bendamustine/Rituxan.  He also had it every 3 wks for 6 mos.  Everyone is different and I have heard everything from no problem to couldn't tolerate.  My husband had no problem with either Benda or rit.  He really just sailed through his chemo.  One benefit with Bendamustine is it does not attack the hair follicles so the patient does not lose his hair.  From our picture you can tell it wouldn't have made much difference for Bill but looks like your husband will be happy with that news : ).  We know it is all new to you and a whole different language.  It might be good to start a new thread via a new title if you can as this is an old one, but if that is too ominous to figure out at the moment, no worries.  We are leaving tomorrow until Friday and may not have the internet, so if I don't answer until then, you will know why.  We will try to find wifi tho, it's just not in the house we are staying in.  Please know that all of us on this forum are happy to help, support and reassure, so please don't hesitate to ask any questions you have and if you need to vent, that is fine too.  We are here for you and your husband.  Please know that lymphoma is very treatable and manageable, so hang in there and your husband is in good hands and this will hopefully be just a short roadblock in your lives.

Wishing you the best, Becky   

Hello, I was diagnosed with NHL follicular stage IV indolant in 2011.  I went on the Rituxan and Treanda for 6 months and then followed up with maintenance Rituxan for 5 years 4xevery 6 months.  I am 4 years out of this and still experience joint pain, brain fog and chronic sinusitis and bronchitis.  I am curious if anyone else has had this ecperience as well? I am so tired all the time of being sick.  I am grateful to be in remission but jeesh.  This is not what I imagined remission would be like.  

This discussion is ancient, but I think worth adding to because it is a great -- and rare -- collection of testimony on chronic negative Rituxan reactions, which is not easy to find.  There is no shortage of info and stories on Rituxan infusion reactions, but nothing on late developing or chronic conditions.  I wanted to add my own response to Rituxan in case it might help others who also maybe wandering in the dark. 

I have been treated with Rituxan as a monotherapy for relapsed nodular lymphocyte predominant Hodgkin's lymphoma for 18 months.  I have had no infusion reactions and up until Aug 2019 had no other side effects to speak of.  I was sailing along.  In August I started feeling ill, and it felt like lung constriction/shortness of breath.  After a long battery of tests, nothing turned up.  I also developed itching, sometimes searing/prickly sensation in random spots on my body (which one person in this discussion had, but it appears to be rare), fatigue, and lately have also since developed some neuropathy.  I have had no joint pain or general aching like others here.  

My symptoms are all relatively manageable most days, but some days not -- and docs are not convinced it's Rituxan.   I went along with thehir assessment for a while, but now am fairly certain it is the Rituxan.  No antihistamines alleviate the symptoms, and I have been on both Predisone and Gabapentin.  Only the latter, sort of, works.  

The upside is that my lymph nodes have shrank and metabolic activity is way down, but disease is still just "stable" and not in complete remission.  Rituxan seems to be holding the line -- my concern is whether symptoms will continue to get worse and force me off of it.  Plan B of chemo is not a great alternative!