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after receiving rituxan side effects

miss maggie
Posts: 929
Joined: Mar 2010

Hello everyone,

I received 4 weeks of infusion with rituxan. I had no side effects during treatment. The last treatment was dec 30. My doctor informed me that the rituxan can still be working for about 4 months. I will be returning to the oncologist the end of april 2010. Then I will have a pet scan. My question, can there be side effects months after. I'm having pain in my left leg. I never had a problem before. I received an injection of cortisone for the pain. DX with slight arthitis in leg. I forgot to mention, I have stage 1, low grade, B cell non-hodgkin lymphoma. God Bless all. Miss Maggie

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Sorry I don't know the answer to that. I finished my R CHOP chemo which includes Rituxan at the end of January. I go back tomorrow for a PET scan to see if it is still in remission. I am anxious about this with butterflies in the stomach. If all is clear I will have maintenance therapy every 3 months with Rituxan. I will ask my MD and let you know what he says. All the best,
Mary

miss maggie
Posts: 929
Joined: Mar 2010

Hi Mary,

First of all, I wish you the very best with your pet scan results. I just said a prayer for you, and truly understand how anxious you must be. When I was first diagnosed, I went into an unbelivable depression. I have noticed many people having R Chop, what is that?

Thanks for your thoughts and concern about the side effects from rituxan after treatment. I went to their site, and found nothing.

Also, I am going to post another message explaining how this nightmare all started.

I will look for your posts about the results. God Bless Miss maggie

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Thanks much for your prayers and good wishes. I didn't get a chance to mention the pain to my MD because he had much to discuss with me about ongoing treatment I am disappointed that I didn't get a chance because I too have a very sore lower left back and leg. It mostly bothers me when I get up from laying or sitting. It has recently started but I know I have had it before and of course my first thought is that everything I have now I think of as being caused by Lymphoma. My PET scan showed a complete remission. Great news indeed! I am now having to decide on which maintenance treatment to do. R CHOP is a chemo cocktail given for, in my case, follicular b cell non hodgkin's lymphoma. There are probably others it is used for. The letters are an acronym for the drug names. Good luck and I will keep you posted and hope you do the same.
Mary

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

I 'm 62 and I know I had aches and pains before but like you I think everything is the lymphoma.

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

I 'm 62 and I know I had aches and pains before but like you I think everything is the lymphoma.

miss maggie
Posts: 929
Joined: Mar 2010

Oh, mary,

My prayers and others on this board were answered. What great news.

Not to worry about talking with your doctor about my question. That was so sweet of you.
It is what it is. No matter where the arthritis came from. I had trouble with my other knee, right knee.

Do you have to decide what treatment for maintenance? What does your doctorr say?

God Bless. May the good news continue. Miss Maggie

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

Mary.........I can relate. I just finished 4 weeks of rituxan and will start maintenance in a couple weeks. I could hardly walk at one point because of low back/left butt pain when standing and getting up and especially walking. My onc sent me for a lumbar mri and it came back showing an "insufficiency fracture" most likely caused by my radiation treatments and osteoporosis. So, don't write off that pain!

They told me that it will heal on it's own with time. My onc has me taking 2 Aleve morning and night and gave me some pain pills when I need them. About the best I can recommend is heating pad, rest, and ALEVE is great (I can barely walk without the Aleve).

It did not start until the rituxan did, but he says that has nothing to do with this....although I cannot truthfully agree with him but I don't have his degree either LOL.

Good luck,
Beth

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JoanieP
Posts: 573
Joined: Mar 2010

I am new to this and so I hope I am doing it right. I was diagnosed in Jan 2009 with Stage 3a NHL. I had the chop and have been cancer free since last June. Praise God!!!! I have had two rounds of Rituxin , the last being in Jan. I have a lot of chills especially at night.. I get warm too a little but not really sweats. Is there anyone else experiencing chills. My nose also runs and I have a little cough. The Dr. did a chest exray and all is o.k I am so glad to find this discussion board. I started a cancer support group in my church and that helps too.

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

HI Joanie,

I finished my R CHOP at the end of Jan. and had 6 cycles. I too have the chills badly nearly every evening and I know once I get chilled there will be no warming up until I take a hot bath. This started shortly after I started treatment and is something I have never ever had. Also the runny nose thing. I have that too every morning when I wake up and it lasts all morning. Again this is something I have never experienced in my life. I could go months or years without needing a kleenex and now I have a purse full and feel the need to scope out the availability of tissues wherever I am. lol I am glad to know that these things are probably part of the package.
Mary

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

Mary, Thank you for your note. I go to the gym and walk 45 minutes 3 or 4 times a week and also notice I am not quite as steady on my feet or feel tired more than I did after the CHOP. I feel so blessed to be able to go back to work and I do not want to think about this all the time. I know it has only been since July that I finished chemo but I don't want this to take away my joy. I trust my Dr so know that if he tells me to do Rituxin I need to. They told me at Moffet in Tampa that Rituxin will give me an 80% chance of not getting it back for 7-9 years. It would be nice if we could talk on the phone but I don't know how to do that w/o putting my # for all:)

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

Mary I am praying for good results from your PeT scan

miss maggie
Posts: 929
Joined: Mar 2010

Everyone is different, I would assume. Having chills, getting warm are the least, look at the results. I am thrilled to hear that you are in remission since june 2009. You, I and others perhaps are attribiting every little ache and pain to either the chemo, or NHL. What do you think?

Great idea to join a support group. I have to find one in my area, nyc.

Stay well and happy. maggie

miss maggie
Posts: 929
Joined: Mar 2010

Hmmmm, is it true that rituxan is not a chemo drug, but an immunotherapy drug?
Am I stupid or what?

maggie

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

Rituxin is given as a maintanence drug. I think if your Dr wants you to have it, it is every 12 weeks for 2 years. I had Stage 3A and he wants me to have it. I will have my third session in April. The chills for me occur during the day some but mostly at night which wake me up . The nurse called yesterday and wants me to take 600 mg of Tylennol every 6 hours to get rid of the chills. I had a night sweat last night , That is scary to me as it was my only symptom before my diagnosis. I am hoping it was because of the heavy blanket I had on. It is so hard not to think that normal aches and pains you normally would have had before you knew about the lymphoma aren't just going out of remission. Maggie it is great that you had Stage 1. Did you have any symptoms? I had follicular lymphoma which I heard was a 60 year old's disease. I got it at 60, I did read that people in their 30's on this board got it. I was very surprised. Tonight I am going to the cancer support group at our church that I started. We usually have about 10m people there. It is great to talk to others. Take care
Joanie

miss maggie
Posts: 929
Joined: Mar 2010

Hopefully the tylenol will work in time. Having the chills all the time reminds me of the flu. Not feeling so good. Forgive me, I am pasting your sentence. It is so hard not to think that normal aches and pains you normally would have had before you knew about the lymphoma aren't just going out of remission. Joanie,I couldn't of said it any better

No symptoms at all. I had the most horrible pain in my stomach area. I have no memory of the pain, but this is what my family told me. I had a ct scan which showed perforation of the bowel. I was rushed into surgery. I was in ICU for one week, and then 2 more weeks in the hospital. Total in hospital 3 weeks. The surgeon gave me the news about NHL, I was shocked and terrified. Days later I saw an oncologist, had a bone marrow biopsy (next time I want to be put to sleep) it was horrible even though she gave me zanax, and an injection to numb the area. Negative for cancer cells. Pet scan, showed something in neck, had biopsy of neck, negative, but there is a goiter which is normal for my age (67). To make a long story short. My NHL cause was the bacterium helicobactoer pylori, which causes ulcers in the stomach and is associated with the development of mucosn - associated lymophoid tissue lymphoma in the stomach wall.

Therefore my DX was stage 1, low grade, B cell NHL. Even though I have stage 1, it could still come back 8 to 9 years later. I will get a pet scan end of april. I will keep everyone posted.

Let me know how everything is going for you. Let me know how the suppost group went at the church.

Maggie

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

I don't know if you are religious Maggie but I always have something to read to the group and I always ask God to send people who need to be there. He always has the right people there to say things to exactly the right people they need to encourage. It is God's group not mine.

miss maggie
Posts: 929
Joined: Mar 2010

Yes, I am religious, even before I was DX. Loved your post. God Bless

maggie

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

You are correct, rituxan is a monoclonal antibody that attaches to a specific type of cancer cells that helps our immune system know what cells to fight, it's not a chemotherapy drug.

miss maggie
Posts: 929
Joined: Mar 2010

I wasn't sure if I was correct or not. But, I'm glad I read your post to confirm what I thought.

Yes, aleve is great. You are correct. Much better than tylenol arthitis. I am terrified to take aleve because all my troubles started by the bacterium helicobacter pylori which causess ulcers in the stomach and is assoicated with the development of mucosn-associated lymphoid tissue lymphoma in the stomach wall. My bowel perforated also. There are warnings on the label of aleve for patients that have had ulcers.

maggie

twinhous
Posts: 2
Joined: Jun 2010

Just discoverd this site today. I've avoided internet searching since my dx in Nov. 09. NHL Follicular, grade 3 b cell stage III. When I heard this verdict I immediately searched it and was too upset to read any further than the statistics. I have had 6 rounds of R-CHOP ending MArch 8. Now I'm on the Rituxan treatment. Infusion every 2 months for 2 years. Runny nose, annoying night time cough. Chills in the evening were solved by nightly hot baths. But then I would be hot and sweaty when I went to bed. Have been having problems with my mouth through out the chemo and now a feeling of slight swelling and extreme sensitivity to acidic and hot spicey foods. Dr. said my mouth should be better but offered no solutions. My dentist suggested Biotene products for dry mouth. The runny nose has subsided with daily does of Loratidane (Clariton). I also have periotic involuntary eye movement. Eye doctor gave me a good check-up and all is well.
Glad to here your turning to your church. I don't know what I would have done if I didn't have my church support. The heavens have been bombarded with prayers for me. I find I can't pray for myself but I can pray for others and I now I'll include you and all others who are turning to this site for advice and support.

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

I can relate. I had my last chemo July 2009 for 3a NHL(follicular) I still have the runny nose, and sore throat. I need to go back on acid reflux medicine as the ent Dr. said it was from that. Never had that before chemo. I have had 3 rounds of rituxin. I think my night time cough is from drainage. I also have been using the nettie pot as I seemed to always have what feels like a small sinus headache at night. The chills are just about gone. I hope you are gaining your strength back. Prayers and my faith have gotten me this far. Prayers for you. Joanie

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

HAVEN'T HEARD FROM YOU LATELY. HOWS EVERYTHING GOING?

Gihan_Jay
Posts: 1
Joined: Aug 2013

Hi everyone,

 

I am new to this website and still finding out about some of the questions that are yet to be answered. As most of you, I too have pains in the lower back due to my tumor and radiation. I was advised to go for Epidural shots and it has helped me a great deal in dealing with that issue. I have finished my 4 week initial treatement and my second maintainance treatment of Rituxin. I have noticed somethings severe leg cramps. I wonder if anyone is having the same problems as I am. I have to go for another CT scan with contrast next month.

 

Blass you all

 

Gihan

 

 

GKH
Posts: 292
Joined: Jul 2012

I have had bout 20 rituxan infusions. It seems to be working but its no free ride. I have several side effects including the leg pains/cramps and mild neuropathy. I started with 8 weekly infusions followed by one infusion every 8 weeks for 2 years. Just grin and bear it and be thankful for how it works. It appears to be the least side effects of any of the treatments Available. But make no mistake - there is a price to pay.

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