Rituxan - anyone have to stop it because of side effects?

Physical Health Cancer
1

My DP has DLBCL -- stage IV at diagnosis back in August. After her third R-CHOP, her oxygen levels dropped to 82% on room air and she was hospitalized. A chest CT and later a PET scan showed either infection or inflammation in her lungs; pulmonary functions tests put her at 46% of expected oxygen diffusion. The docs were hoping it was an infection, and did a bronchoscopy ....... no bacterial, viral, or fungal infection noted. So they thing it is the rituxan, and have stopped it for the remainder of her treatment.

The last treatment was CHOP, and it went smoothly. Lung function has returned to normal. She has two more CHOP treatments scheduled, and two of methotrexate (they had added this b/c her lymphoma is aggressive, and they want to prevent CNS involvement). The methotrexate will now be given directly into her spine to avoid lung exposure.....

The good news is that the PET scan after three R-CHOPs showed no evidence of lymphoma. I am still worried about stopping the rituxan though! It seems like the "wonder drug"..... The docs feel like it will be fine (she got three doses and responded very very well) and it is critical to preserve her lungs (can't argue with that).

Anyone have this experience? And is it normal to have a clean PET scan halfway through chemo?

Thanks -
Jen

2

Hi Jen. My Dad had NHL in August. He did his 6 rounds of R-CHOP and his final scan came back clean. He responded pretty well to the drug. Unfortunately, his lungs became damaged, we believe, from the rituxan. They say it's pulmonary fibrosis. He is currently hospitalized in the Hospice unit on a ventilator. They say his lungs are in really bad shape and will only get worse. they initially thought it was pneumonia so they treated him with steroids and anitbiotics. Within a span of weeks he went from being OK to a critically ill man. supposedly this reaction is not common and has only happened in 23 people. Just keep an eye out for any adverse reactions and ask them to keep checking the lungs. If they see any changes in lung function and it's early enough they might be able to stop the damage. good luck.

3

Hi Kiwi and Jen…I have had the same reaction from my chemo…I went thru test after test and couldn’t find out what was the problem but it all started with the Rituxan. I ended up at Mayo Clinic in Rochester and they figured it out.

It was my understanding that now the damage is done and mine is not reversible but it won’t get any worse because the causing agent has been removed. Is this not what your Docs have told you? I do have fibrosis but not as bad as you describe but bad enough that I ended up on disability because I couldn’t breath well enough to continue working. I also have a very complicated medical history to go along with it…but I am grateful that I am cancer free and able to get around, very slowly, but I do ok.

I am interested or maybe concerned…why do they think your dad’s lungs will get worse?? Have they explained this?

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Kiwi -

I am so sorry to hear about your Dad. It is devastating to be cured of one disease, only to have the "cure" cause a catastrophic problem.....

Frieda's docs noticed the problem starting right after treatment #3. They delayed treatment #4, did a PET scan (to note the progress of the lymphoma, pulmonary function testing, and a bronchoscopy (to see if there might be a bacterial cause). They also brought in a pulmonologist who specializes in working with oncology patients to consult....

There was no bacterial or viral infection, and the PET scan showed she was clear of visible lymphoma. At that point, the docs decided that it was probably a drug reaction with the two likeliest drugs being 1)Rituxan and 2)methotrexaten (a distant 2d). They decided the risk of lung damage from the rituxan was greater than the risk from the lymphoma, so they stopped it altogether. (Our doc said that the statistics on effectiveness of CHOP vs. R-CHOP were in the single digits, and she had already had 3 rounds of "R".......)

They also decided to give her the methotrexate intrathecally (spinal injection) in order to eliminate lung exposure to that drug. (The methotrexate is being given to prevent the lymphoma cells from getting into the CNS...... a small, but significant risk in aggressive NHL, I guess...)

She is due for CHOP #6 this week, and also the last methotrexate injection. As of now, her lungs sound clear to the docs, and all symptoms (shortness of breath, fatigue, etc.) have disappeared. After the last treatment, I know we will have another PET and possibly another round of pulmonary testing just to be sure. However, I am hopeful that she has escaped permanent lung damage.

Her doc, who is also a researcher at Harvard, told us that this reaction to Rituxan was very rare and infrequent, but potentially very dangerous. That is why they took it seriously enough to delay one treatment cycle, do all the testing, call in a consultant, and ultimately stop the drug..... I am just hoping the mixed R-CHOP/CHOP protocol will work for her!!! (SHe is 56 and otherwise very healthy....)

Again - so sorry to hear about your father. I will pray that he does improve...

Jen

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OK I see what everyone is talking about...Tony K. told me what language this was before however I don't remember.

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Hi Jen...It is normal for you to be visible cancer free in the middle of treatments however there could be cells traveling around that haven't caused visual nodes or cancer sites but are still there, the rest of the chemo is to "clean-up" those cells so it doesn't come right back after treatment.

What did the Doc's tell you about Frieda's lungs becoming worse after the Rituxan was stopped? I understood my damage to be done and it wouldn't progress as I am off of chemo now. Did I missunderstand?

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My husband had 6 rounds r-chop with increasing breathing problems. finally went to pulminary dr and put on oxygen.Then they did bronchoscopy, then had 2nd PET scan. Cancer free, but still problems breathing. They don;'t know what is causing breathing problems; they are thinking reaction to Rituxin. He is not having any more R-chop, but I scheduled pulminary dr appt because I am concerned that they dont know what it is and if he has/is developing pulminary fibrosis he needs the right treatment now!! I am going to demand a referral to somewhere- Mayo or anywhere (we ive in Iowa). Any comments.ideas? Thank you!

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I got problems with breathing everytime I took the Rituxan. I did go to Mayo Clinic, they did a complete work-up but it is extremely hard to say that it is from the Rituxan. I am almost 1 year out and breathing problems are still an issue, I don't need oxygen but I also have other medical issues that contribute to that issue soooo who knows. I guess being alive is the trade off.

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Remember all these drugs do their own damage and good.I feel that Chop or Rituxan caused my heart and lung damage.I guess it's a balance..... live with this or die with that.These drugs are very harsh,guess if we each read the "fine print" of all the deaths and side effects we'd never take the drugs or would we?

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Thank you! Pulminary doc is having the oncologist make the referral for 2nd opinion at Mayo. I shared concern about pulminary fibrosis and he thought this was not that, but I want another opinion.

My husbands cancer:Diffused Large B cell stage 4

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I am so new - just had my first Rituxan - I am hoping to see some quick benefits and limited side effects. So far I had the chills while getting it and have a sore neck but who knows what causes what. Does anyone know if you can drink on Rituxan. Could use a cold beer after a hard day of work.
Peace all

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They told me no alcohol. Sorry...Try the O'Doole's or other non alcoholic beers. That may be better than nothing.

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HELLO ALL

For the past 34 years, my wife(61), has been suffering with increased symptoms of Wegeners Granularmatosis. This was initially diagnosed as Relapsing Polychondritis 20 years ago. Over the past 20 years she has been on varying doses of oral steroids and periods of Methotrexate and Enbrel. Her new rheumatologist has now started her on a course of Rituxan infusions 2 weeks apart. The first infusion required premedications of 100mg IV steroids, IV Benadryl and oral Tylenol. She has been on 20 mg prednisone for 4 months. After the premeds and within 90 minutes of the Retuxan infusion start, she developed hives, a cough and a burning sensation in her chest. The nurse stopped the infusion, increased the Benadryl and brought in the attending doctor. The symptoms lasted about 3 hours. They ended the session. Her rheumatologist wants her to try again with 3 days of increased prednisone.

Has anyone else had a similar reaction? If so, what was the plan for the next infusion and was it successful?

There are so few WG patients on Rituxan this seemed to be a good site to get answers. Hope you don't mind.

Thanks
Richard

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Hi Richard, you should copy and paste your post under a new thread title. it will get more attention and posts. Good luck and welcome! Gma KB

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I am having only minor reaction to my second rituxin - full dose. It sounds like a lot of people take it with some other chemo agent. I am guessing that this might be the reason for some difficulty they are experiencingl.

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Rituxan will frequently cause such reactions, what they suggest is the usual plan. Sometimes it goes ok and sometimes they have to stop. They watch you really close til the reactions don.t happen anymore or they stop!