Bendamustine Side Effects & Patient Stories
What Is Bendamustine (Bendeka)?
How Is Bendamustine Administered?
Sometimes referred to as an alkylating agent, bendamustine is administered into a vein, usually either by IV or by port if a patient opts to have a port for treatment.
What to Expect After Bendamustine Treatment (Side Effects)
If an oncologist or other healthcare provider has recommended bendamustine chemotherapy for you or a loved one, you may wonder about Bendeka side effects and what to expect. Some of the most commonly reported side effects include, but are not limited to:
- stomach pain or swelling
- sores or white patches in the mouth
- dry mouth
- bad taste in the mouth or difficulty tasting food
- loss of appetite
- weight loss
- difficulty falling asleep or staying asleep
- back, bone, joint, arm or leg pain
- dry skin
- night sweats
Bendamustine (Bendeka) Patient Stories
Here’s what patients had to share about their bendamustine treatment experiences and some bendamustine and rituximab side effects:
Honestly, the chemo itself was not bad. When I first got the first chemo treatment, I was sick. I was throwing up and I had nausea.
I had thrush a lot. The thrush was very painful. I couldn’t eat sometimes. I had to eat a lot of liquidy foods. The thrush was like a white coating on my tongue.
If you ever ate Sour Patch Kids and you ate too many of them, you would get this white film on your tongue, that’s what it kind of reminds you of, and blistery. It’s very painful. Very painful.
The other side effects for me was not sleeping, and my skin was hot. It felt like it was on fire.
In all honesty, I craved something salty. I had to have salt. I would eat a lot of salsa and chips. I really didn’t have a lot of side effects as far as the chemo. Just not sleeping and salty foods.
The only other real side effect that I really had was from the steroids. I would be up all night and also from Neupogen, the white blood cell count medicine that they gave me. I felt like I was hit by a Mack truck.
Kim S. (Follicular Lymphoma, Non-Hodgkin’s Lymphoma, B-Cell, Stage 4)
I started chemo, over two days each cycle, in November. It was bendamustine and rituximab.
One day was about a four-hour infusion for the bendamustine through an IV.
I got Emla cream to try to numb the area before the IV but then a nurse told me I shouldn’t be doing that as it actually constricts the veins. My veins in my hands took a beating and several times my veins ruptured.
Within 24 hours of getting my first chemotherapy of bendamustine and rituximab the tumor on the back of my head completely disappeared.
It melted it away the very first time. Your initial response to chemotherapy is a predictor of how well you do in the long run from what I understand.
I developed a bad mouth sore. That month, I made the mistake of not taking the ondansetron, anti-nausea medication, preventatively.
I waited and nausea came. Then I tried to treat it and it wasn’t successful. I never made that mistake again.
Never ever wait on the anti-nausea meds till symptoms arise.
Candy W. (Mantle Cell Lymphoma, Stage 4 MCL)
The first two days would be bendamustine, which would take an hour or hour-and-a-half to go in my body. The last day would be rituximab and they estimated that as an eight-hour drip, at least.
The port probably would have given me anxiety since I knew it was only going to be six months of treatments. This thing sticking out of my chest, I wouldn’t have been able to sleep so I chose to go with getting stuck each month.
Anybody going through chemo, don’t drink coffee before you get the IV in your arm, if you’re not doing a port. What it does is dehydrate your veins.
One time they took three tries before they could get it in and the nurse said no coffee before chemo. The moment it was threaded in my arm, I would send my husband to coffee!
It started in the evening when I started throwing up,with nausea, really bad headaches, I felt like I couldn’t catch my breath, couldn’t get enough water or liquid in my body. I was to the point where I was throwing up bile.
My tastes were changing because nothing tasted good to me. I would drink a soda and it would make me throw up. It may have been the sugar. It was one of the harder times of my life during that weekend.
They tell you not to go anywhere for the first four days after treatment because you are immunocompromised. I remember one time we were driving around looking for food to eat because I couldn’t make up my mind. I’d say something was good and then five minutes later I would change my mind.
Sheree N. (Non-Hodgkin Lymphoma, Waldenstrom Macroglobulinemia [WM])
They weren’t happy with how little my numbers had dropped, so we had to change up my regimen.
The new one was brentuximab and Bendeka. According to all the billing, those were very expensive drugs.
I didn’t have any side effects with those two drugs.
Tylere P. (Hodgkin’s Lymphoma, Stage 3, Relapse)
All Bendamustine Patient Stories
Candy W., Mantle Cell Lymphoma (MCL), Stage 4
1st Symptoms: Bump in back of head, extreme fatigue, acute weight loss
Treatment: 6 cycles bendamustine & rituximab (Rituxan), BEAM chemo before autologous stem cell transplant, 2 years maintenance chemo (Rituxan)