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Rituxan just doesn't like me!

anliperez915's picture
anliperez915
Posts: 755
Joined: Sep 2011

Hello everybody,
Well the verdict is in and the Rituxan just doesn't like me!!! I got a nasty rash/hives that started on Tue. it started in my arms now its from my hands to my feet except for the face (just please don't touch the face lol). I called my Oncologist on Tue. and he said to take benadryl but it didn't really help. Yesterday I went to the Rituxan treatment and he wanted to see my rash/hives. He said it couldn't be the Rituxan given me the rash and that it must be something else. I know it's the Rituxan because yesterday they gave me the benadryl along with the pain medicine and some steroids which completely took the rash away. I was really happy that it was gone but in the evening the rash/hives came back! I hadn't even taken my other medicine yet so I know that its the Rituxan. He also prescribed some Prednisolone. He also showed me my lymphocyte % and it looks really good! The only thing that I didn't like was that he wants to do another BMB in two months! Ugh, I really don't understand why??? Sorry for bombarding you guys like this...just wondering if any of you has had anything like this happen? Take care everybody and hugs to all!

Sincerely,
Liz

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi Liz,
I'm so sorry you are having problems with Rituxan. All of the symptoms you have mentioned are clearly listed under possible Rituxan side effects. I don't know sweetie...I'm at a loss for words. Are you ok with the cancer doctor you have? If you type in Rituxan, up in the right hand corner...(search Hodgkins Non Hodgkins lymphoma) here on the CSN page, you will get a ton of feedback on Rituxan from as far back as 2001. I have gone through many of the posts and have learned so much. Maybe if you get time this weekend you can go through the info and hopefully find someone similar with your situation. BTW....do you have to take the prednisone all of the time or is it just prescibed for a short period of time? I seriously hated that medicine! I don't know what to think of your BMB test being repeated, but once again...your doctor SHOULD have explained to you his reasons for wanting it done. Just be sure to ask for sedation...not just numbing. I won't EVER agree to have another BMB done unless I'm guaranteed I'll be knocked out...stone cold...out like a light! I don't want to hear or feel anything...my one and only BMB was just plain awful! Well sweetie...I will keep you in my prayers and hold positive thoughts that this Rituxan situation will get figured out. Hang in there and share back what you find out.
Love you...Sue (FNHL-2-3A-6/10)

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

Liz,
First thing that popped in my mind was,"What is the real alternative to the Rituxan?" I am sure there are others out there,but it seems its the medicine of choice right at this time. Be sure to ask and then check it out for yourself. As far as the BMB,Well it was a hell of an experience for me. I had no numbing agent or anything. They said they rubbed something on me that would numb the area and gave me a shot that did nothing. I don't know if it was the actual BMB or the pulling and tugging that got my heart racing,but what ever it was it did a number on me. I thought the needle was going to break off. I had no idea how thick it was. I never saw the needle. It was covered up in a blue cloth when I went into the room. I understand the needle or pipe, after I saw what they looked like is actually twisted into the bone like a hand drill.It reminded me of some ancient torture tool I have seen on TV.It had a t-handle on the top. If I would have seen it beforehand I don't know if I would have gone thru with it or not.No Joke !!! My question was why didn't they twist it out? No,it was a pulling from side to side motion to get it out.To this day like a lot of other people I still have an achy left hip.Personally,I would have to think on it for another one.There would have to be a darn good reason for it. Please check and see why. John

anliperez915's picture
anliperez915
Posts: 755
Joined: Sep 2011

Hi John,
You made me laugh "there would have to be a darn good reason for it" that's exactly what I've been thinking so far! I'm gonna try and talk to the Onc to hold on it, can't he just look at my blood levels or CT/Pet scans. Just thinking about it is making my behind hurt ouch!!! Take care of yourself and I'll keep you posted.

Sincerely,
Liz

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

Your discription of a BMB gave me the shivers. I will never have one in less they hit me over the head with a hammer or I am out stone cold. You and Sue have convinced me totally!!!! Joanie

miss maggie
Posts: 929
Joined: Mar 2010

Dear Liz,

I too am a loss for words. As always, Sue gave you the correct info. Check the side effects
of Rituxan. Oh boy, I know how upsetting it is for the up and coming BMB. I promised
myself, in the event I should ever need this procedure again, I would be medicated with
Versed and Fentanyl. I had a colonscopy and there is no need for anestologist, sorry for the spelling. Therefore, there is no additional cost for the doctor and hospital. No need to pay for a specialist to give you the sedation. The only cost would be for the drugs.

I hope some of this email helps. Love Maggie

shelbymae
Posts: 8
Joined: Feb 2012

Good Morning,
I am so surprised that your dr is continuing your Rituxin when you are having side effects. When I was receiving Rituxin the chemo nurse would give me the Benydryl a half hour before the drip was started...they wanted it in my system before they started the drip. The nurse would start the drip very slowly and she would watch me closely to make sure there wouldn't be any issues. The nurse would gradually increase the speed of the drip. It would take 4hrs to receive my treatment of Rituxin. I was given instruction to call the office immediately if I had any side effects..those that you are having. I am sorry you are having to go through these problems.
As far as the BMB my Oncologist told me it wasn't as bad as having a baby...I am not sure what she was thinking???? I had 2 babies/2 emergency surgeries for tubal pregnancies and gallbladder surgery the old fashion kind and none of it felt as bad as the BMB...I have never felt such pain. I would certainly ask why you need a second one and if so to please drug you heavily.
You are in my thoughts and prayers...please keep us updated.
Shelbymae

tall floridian's picture
tall floridian
Posts: 87
Joined: Dec 2011

I too had Rituxin this week as my chemo maint.and have experienced terrible diarrea and upset stomach all week. It usually goes away in a couple of days but this one has me baffled. My onocologist says it's a normal reaction and has me on stomach pills and anti-diarrea medication but still feeling weak and no appetite. As far as my BMB test two weeks ago given by my onocologist in the hospital - wasn't too bad as he gave me two shots before and some jell to numb the pain. He hates his patients having pain and walked me through the procedure gently asking me my pain tolerance on a scale of 1-5 with 5 being the worst - it took about 15 minutes so I just grinned and tried to hide the pain thinking positive thoughts. The test found that my cancer is in remission so it was worth the pain. May we all experience healing and good reports in our walk with cancer. God bless - Steve

anliperez915's picture
anliperez915
Posts: 755
Joined: Sep 2011

Hi Steve,
I hope your feeling better and your stomach problems have eased up a bit. Thank God your cancer is in remission I know everything that we are going through is worth it in the end. I'll probably do the same if I have to get another BMB think happy thoughts or put me out completely! Take care of yourself and let us know how you're feeling ok.

Sincerely,
Liz

anliperez915's picture
anliperez915
Posts: 755
Joined: Sep 2011

Hello Everybody,
Thank you all for responding!
Sue I did the search and I was really surprised to see how many people have the side effects that I'm having. Rapid heart beat, rash, and since day one the horrible pain that the medicine gave me. I'm going to see the Dr. next week again and I'm gonna ask him for any alternative medicine that he can give me instead of the Rituxan but I doubt he will want to. I have been feeling really weird my body hurts and I feel really sore from my muscles. It feels like I did a lot of exercise I also feel weak and shaky. I'm also loosing weight without trying... About the prednisone I'm taking it for six days and on thursday I couldn't sleep until 2 am and woke up at 5 am. On friday it had the opposite effect I was extremely tired and sore. It has helped with the rash but as soon the medicine subsides the rash comes back. About the BMB the onc said something about checking to see if the medicine is working on my cancer. But I'm gonna try to see if he can hold on it for a few more months. Oh well we have to take the good with the bad I guess! Well again thank you all for your kind words and words of wisdom. God bless you all! I will keep you guys posted.

Sincerely,
Liz

kandco
Posts: 7
Joined: Feb 2012

Hi Liz,
Rituxan was part of both of my treatments, and I had side effects, also. Mine would usually go away after the second or third treatment. Did your BM biopsy show bone marrow involvement? I hope the treatments get easier for you.
Cheryl

anliperez915's picture
anliperez915
Posts: 755
Joined: Sep 2011

Hi Cheryl,
Yep I had bone marrow involvement along with tumor in spleen and liver. This Oncologist is my second Dr. because the first one I had wasn't really working out for me. This Oncologist is good but I do have to sit down and have a good long talk about all the stuff that I'm experiencing. I hope your doing good as well, I'm not sure where you are standing at the moment. Well take care of yourself.

Sincerely,
Liz

onlytoday's picture
onlytoday
Posts: 586
Joined: Jun 2010

Hi Liz,

I had four treatments of Rituxan (I have Nodal Marginal Zone NHL Stage IV- in my lymph nodes and bone marrow). Anyway, I had reactions with each infusion, to the point that they finally had to run it so slow it took literally 10 hours one time! They would load me up with prednisone, benedryl, the works and nothing really stopped the hives, rigors, etc. But we continued. The last infusion was rough and they stopped it entirely before it was totally done. I went home and ended up in the ER that night with a severe allergic reaction. But here's the thing- my second opinion onc at Sloan Kettering said last week that there is a possibility that I can have it again and that the reaction was really the lymphoma response - not a true allergic reaction. Kind of scares me but I trust him. And the Rituxan did in fact make my numbers better even with all the trouble. No true Remission (although the one onc called it a Remission once) but it got me out of trouble.

That was in 2010 and I haven't needed treatment until now. Pretty good response!

Best of luck to you- hope and pray your response to the drug is good and that the side effects stop!

Love ya,
Donna

miss maggie
Posts: 929
Joined: Mar 2010

Dear Donna,

Forgive me my friend. I never knew you had such problems with Rituxan, and ended up
in the ER. There is so much I am in the dark about. The fact the Rituxan did decrease
your numbers, is a blessing considering all you went through.

The information you learned from your oncologist, Dr. Paul Hamlin from Sloan is very
important to know. For Liz and others. Especially the Lymphoma response. Isn't it
interesting, your other oncologist never mentioned this fact to you.

I hope the treatment you will be receiving now will be less toxic. You are always in
my prayers.

All my luv. Maggie

anliperez915's picture
anliperez915
Posts: 755
Joined: Sep 2011

Hi Donna,
Wow that is all I have to say, They missed your bowel problems for so long! Just wondering what where your symptoms? And that it gets taken care of fast so you can start treatment.
Sometimes I think that the Dr's don't want to acknowledge the side effects that some medicines have on us. My Onc said he didn't think it was the Rituxan because I didn't have them on my first treatment. I was however heavily drugged up because I did have extreme pain in my lower back so maybe I didn't get to have the rash until the second week. I did show improvement on my lymphocyte %, I guess its worth it in the end if its gonna get me on remission. I truly believe its an allergic reaction but just like you trust my Doc and I'm always hoping for the best whenever I go in there. Just one more to go Thank God! Take care of yourself and sending you a (((HUGE HUG))).

Sincerely,
Liz

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

Hey Liz, sorry to read about the Rituxan side effects, I can really relate to the rapid heartbeats, that was a real problem for me. Keep up the positive attitude! It will be over before you know it!

kandco
Posts: 7
Joined: Feb 2012

Donna, I also had / have Nodal Marginal Zone and was stage IV with lymph node and bone marrow involvement and a very enlarged spleen. My first treatment was CVP-R in 2008, and I received a partial remission and the cancer remained stable. I just did a trial of Cladribine, Rituxan and Vorinistat and obtained a complete remission, including my bone marrow. I did the trial at the Hershey Med Center Cancer Institute. Montifiore in New York is also offering the trial. Although, Sloan-Kettering is great!

Liz, the above should let you know how I'm doing. Right now, I'm doing Rituxan maintenance for 2 years and feeling the best since 5 years ago.

Cheryl

onlytoday's picture
onlytoday
Posts: 586
Joined: Jun 2010

Cheryl,

Thank you so much for the info on your success with the trial! I am definitely going to mention this to my oncologists both at Philly and NY! How exciting !! It truly gives me hope. I've been feeling lousy for so long... still have SIBO (sm bacterial overgrowth) which the gastro doc just dx after 11 months!! Can you imagine!! On top of the NHL fatigue, etc. So once my intestines are cleared up they said that they want to treat.

You really give me hope that remission can happen! Thank you so so much.

Donna

kandco
Posts: 7
Joined: Feb 2012

Good luck, Donna! Hopefully, you will get a good remission too! Although, I obtained thus remission, it isn't considered a cure. I'm just thrilled, I feel good and am taking it one day at a time.

anliperez915's picture
anliperez915
Posts: 755
Joined: Sep 2011

Hi Cheryl,
That's awesome that you're in remission and lets keep on praying that it stays like that for a long time. I'm hoping the same thing for myself and I'll do whatever it takes to get there (rash, BMB, fast heart beat! (lol). Take care of yourself

Sincerely,
Liz

kandco
Posts: 7
Joined: Feb 2012

Thanks, Liz. I hope I have a long remission also, and I wish the same for everyone! This sure isn't any fun!!

I didn't comment previously on the BM biopsy. They are miserable, and I've had three. Your doctor wants to do another because they are a true test of the success of the treatment. A person can have no enlarged nodes and a clean PET but still have bone marrow involvement. However, my doctor did a CT/PET after 2 treatments (usually it is 3, but did it at 2 since it was a trial) to see if the treatment was working. My biopsy was done 1 month after treatment was completed.

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