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Rituximab And Intense Nausea And Loss Of Appetite

A MyLymphomaTeam Member asked a question 💭
Hong Kong

I am currently suffering Stage IV Bcell Follicular Lymphoma for which I receive monthly injections of Rituximab (Mabthera).
I suffer intense nausea, loss of appetite and fatigue. I have not enjoyed one meal for almost one year!
My doctors tell me I am imagining the nausea and that Rituximab never causes nausea and is a wonder drug!
Am I going crazy?
Graham

March 11, 2023
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A MyLymphomaTeam Member
August 14
A MyLymphomaTeam Member

GrahamHarris,
I definitely would get a second opinion to see if there is another drug that you could take without such severe side effects. I hope you feel better soon. Kelly

August 13
A MyLymphomaTeam Member

You are absolutely not crazy!!! What are they thinking? Wow. You just have to read the basic literature to know that GI issues, including nausea are known, & can be common side effects. I know that I was offered RCHOP (with Rituximab) by both oncos. Then Moffitt changed their DX and tx to just Rituximab couple of weeks later. I turned down both. These were offered when the Whipple surgery biopsy results showed I had NHFL instead of the bile duct CA they thought was highly probable. At my local hospital this was staged as Grade 3A and 3B. It was not until months later that they did a bone marrow biopsy that led them to declare me as stage 1. Things are so sketchy - it is either stage 1 or 1E - depends on the Dr you speak to or which report you read. There is some crazy!

My journey has been atypical - so many twists and turns. Because my Lymphoma caused a 100% bile duct obstruction - I had escalating major GI problems for many, many months prior to surgery/dx: including severe nausea and GERD. I will tell you that the Drs I spoke with just did not seem to comprehend the severity of these symptoms. I was constantly being told to eat/drink. YEP - you must eat/drink to live but they could not grasp what happened inside when I tried to follow their instructions. All the meds only helped at little. Even sipping water was a problem. Explained to them, until I eat/drink enough to sustain my body and start to feel like a human again, no CA tx. It has been 15 months with labs and a CT q 6 months. My frustration is that when I tell them of my improved but continuing GI issues, my fatigue, infections (UTIs, as well as both ear and sinus infections requiring ABTs in the last year) and general I don't feel good comments, I am told that my labs/CT are good. Point blank - anything else is not related to Lymphoma. Interestingly, I have never been told that I am in remission.

So frustrating to be dismissed when you know even though you have had improvements in many areas, there are still many things in your body that simply are not right.

Hang in there! Do your research, ask questions (especially here) and understand that Drs are human too. Some are good at what they do, some maybe are not. Bodies are complex and mistakes happen. At least that is what I try to remind myself before I try again and again to be heard. You are your best advocate. Good Luck!!!

March 11, 2023 (edited)
A MyLymphomaTeam Member

I hope your doc didn't use the word "crazy!" The last thing we need to hear when we are hurting! Here is an excerpt from the NIH, National Institute of Health, Medscape website:"Some side effects can be serious. If you experience any of these symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately:

unusual bruising or bleeding
sore throat, runny nose, cough, fever, chills, or other signs of infection
earache
painful urination
redness, tenderness, swelling or warmth of area of skin
chest tightness
severe stomach pain or vomiting
nausea, vomiting, diarrhea, and lack of energy"

March 11, 2023
A MyLymphomaTeam Member

I have the same thing.Constantly nauseas, can’t eat much. It’s so frustrating I feel like this every day. How are you doing?

August 13

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