Side effects-Rituxan?

girliefighter

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

Unknown

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

Rituxan Effects

i was more fortunate than most on here as even though I was diagnosed with stage IV fnhl, no major organs were immediately threatened. That made me a good candidate for Rituxan monotherapy. I had a total of 26 infusions. It worked. I had been having leg muscle, lower back , shoulder and knee pain a couple of years before diagnosis. The back pain went away almost immediately after I started rituxan. The shoulders eventually felt better too. The knees and leg pain remained and actually worsened. I was told Rituxan was not the cause and that I probably needed knee implants. I am too young for that! The treatments ended in early April. Here we are 6 months later. My legs still hurt a bit but much less than while on Rituxan. My knees are now fine. Draw your own conclusions.

Unknown

unknown said:

Rituxan Effects

i was more fortunate than most on here as even though I was diagnosed with stage IV fnhl, no major organs were immediately threatened. That made me a good candidate for Rituxan monotherapy. I had a total of 26 infusions. It worked. I had been having leg muscle, lower back , shoulder and knee pain a couple of years before diagnosis. The back pain went away almost immediately after I started rituxan. The shoulders eventually felt better too. The knees and leg pain remained and actually worsened. I was told Rituxan was not the cause and that I probably needed knee implants. I am too young for that! The treatments ended in early April. Here we are 6 months later. My legs still hurt a bit but much less than while on Rituxan. My knees are now fine. Draw your own conclusions.

Legs

and I developed restless leg syndrome, mostly at night, when on Rituxan.

moscies

Evaline said:

B Cell NHL
It seems that everyone else has had Chop for NHL. I have only had the Rituxan, with steroid,
and Tylenol. I had stage 3, one in my neck and one behind my stomach. After 4 treatments, the scan showed I was in remission. Will take my last 2 year maintenance treatment in June 2009. I didn't realize that Rituxan made joints hurt. I hurt in my knees. But it is better than knowing I have the Cancer. I also have arthritis in my hands, so I attriputed the pain in my knees to the arthritis. Has anyone else just had Rituxan for NHL or has everyone had Chop also? If so how long in remission? I sometimes tingle in my left had fingers. But, since I am doing my last treatment I guess I will have to go with it. Will have another scan in July -09.

How long does remission usually last?

Me Too

I am currently in the middle of Rituxin infusion program too. I too wondered why only Rituxin. I decided I had to trust my doctor 100%, which is difficult to maintain. So many thoughts, questions from friends, etc., etc. 

I thought I was doing great three weeks out from my last infusion. My neck swelling was getting smaller. Until yesterday when the neck nodes became very painful and swollen again. Incalled my doctor and am seeing him tomorrow.

I'm 68, very active, surf, ride my bike, walk. I consider myself very fit.

Constant aches in right side. Some pangs in groin. But neck swelling close to biopsy site has me concerned.

 

MichelleChristine

Hello,
I am in my second year

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???

MichelleChristine

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

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.

MichelleChristine

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

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.

pdkoul

surfsup said:

chronic pain after rituxin
My husband also received rituxin only for low grade NHL stage 4. He had a severe painful reaction with first dose that the Dr had never seen. Had to treat with Demerol. They were stumped. Several years have passed and he still has that severe unrelenting pain only resonsive to narcotics. Says it feels like severe bone pain. Again, the Dr has never seen this. They don't know how to treat this non-malignant long term pain. This is at Mayo clinic Jacksonville. Starting to feel we are all alone here. Has anyone else experienced this? How and where was your pain managed? Would like to talk, see or be referred to someone that has experience with this.

chronic pain after rituxin

Hi surfsup, I know it has been 7 years since your post but I could not help registering on this site and leaving you a response. I also had the rchop therapy and have been in remission for 8 years. To this day I suffer the same deep bone pain your husband has described. I also have sharp pains periodicaly thoughout my body. I have tried anti seizure medications, anti depresants, vitamine treatments and even marijuana before I ended up with many years of opiates. I am so gratefull to be in remission but it came at a life changing price and  i am reminded of that price every day. Not the best response to your message however  I did find some peace knowing that  I am not alone with this issue, I hope your husband will also. Sincerely, Peter 

 

sierraunion

Rituxan side effects

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

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

 

 

illead

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

 

 

Hi 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   

Daz6441

Benda & Ritux

Hi all, I have just completed my 2nd spell of chemo for NHL follicular lymphoma, my 1st was in 2006 and now again in 2016, in 2006 I had r-chop and in 2016 I was given benda & Ritux, this concoction has worked really well for me although I was quite unwell at times and I had a bad reaction to the ritux early on. My treatment of 6 cycles has now finished and now I am going over to two years of Mabthera Rituxan via a subcutaneous injection, this is where they inject direct into the stomach, I have just had session one and all was well on day one, but since then I have had a real pain in my stomach and my joints have been aching worse than before. I am going back to see my oncologist shortly for advise... Not a happy chappy!

lori1970

Rituxan Long Term side effects

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.  

Mary from NJ

tgyphilly said:

Negative Rituxan reactions

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! 

Timing of relapse for NLPHL?

Thank you for posting this information about Rituxan reactions ----

If you don't mind my asking, since your first treatment for NLPHL,, about how long was it before your relapse and have you had only one relapse?  I have a CT scan in mid-March followed by visit with oncologist. It has been 3.5 years since my last infusion of Rituxan.  Although I try to believe otherwise, my symptoms are what they were 4 years ago. I can relate to what you call 'searing/prickly sensations in random spots of your body'. 

tgyphilly

Negative Rituxan reactions

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! 

tgyphilly

Mary from NJ said:

Timing of relapse for NLPHL?

Thank you for posting this information about Rituxan reactions ----

If you don't mind my asking, since your first treatment for NLPHL,, about how long was it before your relapse and have you had only one relapse?  I have a CT scan in mid-March followed by visit with oncologist. It has been 3.5 years since my last infusion of Rituxan.  Although I try to believe otherwise, my symptoms are what they were 4 years ago. I can relate to what you call 'searing/prickly sensations in random spots of your body'. 

I relapsed after 21 years, to the exact day.  Good luck with your scans -- I hope the symptoms are false alarm.