Brentuximab Side Effects | Described by Real Patients

Brentuximab Vedotin, commercially known as ADCETRIS, is a treatment for lymphatic cancer patients that targets the CD-30 protein. In this article, we delve into the key aspects of this medication, from its administration to potential side effects, with a focus on providing useful information to patients.
Brentuximab vedotin is a laboratory-made antibody whose mechanism of action works by locating cancer cells and attaching to CD-30 surface-level proteins to destroy those cells. (2)
The medication is used to treat Hodgkin Lymphoma, Anaplastic Large Cell Lymphoma (ALCL), and Cutaneous T Cell Lymphoma, which are cancers that affect the lymphatic system and include over 60 variations.
At The Patient Story, we care about providing readers with comprehensive and supportive overviews, in empowering them to make their own informed treatment decisions. Below, we will cover everything there is to know about this new development while sharing real-patient stories.
“Brentuximab was the ‘easiest’ treatment. It was done within an hour [of] infusion and 30 minutes of pre-medications. I received this treatment every 3 weeks, for a total of 18 rounds. There was no hair loss. My hair actually grew. Slowly, but it grew. I had severe muscle pains, and a year later I still have peripheral neuropathy that the treatment caused. My walking is a lot better, but for over a year I walked with a limp."
Table of Contents
Brentuximab Treatment: What is It?
Brentuximab j-code —referred to as J9042 in medical nomenclature—is administered intravenously in 3 week cycles via a 30-minute drip infusion. For those who have untreated peripheral T-Cell Lymphoma, however, the treatment is often combined with chemotherapy. (4)
The medication is best geared towards those at high risk of cHL or who have experienced a relapse in sALCL. (6)
This rather new and effective drug used to treat lymphatic cancers has changed the entire trajectory and outlook for patient recovery, increasing survival rates and decreasing likelihood of regrowth.
In addition to the intravenous procedure, a treatment plan with Brentuximab includes regular PET scans (tests that detect metabolic activity) to evaluate the body’s metabolization of the cancer by locating abnormal activity and treating those areas proportionately to the level of severity.
The PET scans also allow patients to view their treatment progress regularly and understand its efficacy on their affected regions.
Besides the integration of chemotherapy, many patients choose to incorporate bone marrow transplants into their Brentuximab Hodgkin Lymphoma treatment plans.
Brentuximab Vedotin Mechanism of Action
Brentuximab vedotin is an antibody that zeros in on CD30. When it connects with CD30, it’s like a key unlocking the cell. Inside, it releases MMAE, which acts as a roadblock for microtubulin, putting the brakes on cell division and growth.
Ado-trastuzumab emtansine (T-DM1) is designed to tackle HER2. Once inside the cell, it unpacks DM-1, which interferes with microtubule assembly, causing cell death. T-DM1 also has a dual role by blocking HER2 signaling, preventing the shedding of the extracellular HER2 domain, and encouraging antibody-dependent cellular cytotoxicity (ADCC).
Gemtuzumab ozogamicin (GO) has its sights on CD33. When it enters myeloid blast cells, it releases calicheamicin, a DNA-damaging agent that disrupts the DNA structure with breaks. It’s a precise tool for the job.
Brentuximab Side Effects
It’s crucial that your doctor keeps tabs on your progress with regular check-ups to ensure this medication is doing its job. Sometimes, they might need to run blood and urine tests to make sure there are no unwanted effects. Lastly, be mindful that this medication might affect your blood sugar levels. If you encounter any issues or notice changes in your blood or urine sugar test results, consult your doctor.
Remember not to take any other medications without discussing them with your doctor first, whether they are prescription, over-the-counter, or herbal or vitamin supplements. Your doctor can provide guidance on potential interactions.
Common Side Effects of Brentuximab Vedotin:
Taking a medication can sometimes come with unexpected side effects. While it’s important to keep in mind that not everyone will experience these, if you happen to, don’t hesitate to reach out to your doctor or nurse. Here’s a list of side effects to keep an eye on:
Back Pain
Blurred vision
Body aches or pain
Bone pain
Burning, numbness, tingling, or painful sensations
Chest tightness
Chills
Cough
Difficult or labored breathing
Dry mouth
Ear congestion
Fever
Flushed, dry skin
Fruit-like breath odor
Headache
Increased hunger
Increased thirst
Increased urination
Loss of voice
Lower back or side pain
Nausea
Pain
Painful or difficult urination
Pale skin
Pinpoint red spots on the skin
Sneezing
Sore throat
Stomach pain
Stuffy or runny nose
Sweating
Swollen, painful, or tender lymph glands in the neck, armpit, or groin
Trouble breathing with exertion
Unexplained weight loss
Ulcers, sores, or white spots in the mouth
Unsteadiness or awkwardness
Unusual bleeding or bruising
Unusual tiredness or weakness
Vomiting
Weakness in the arms, hands, legs, or feet
General feelings of unwell
Numbness or tingling in the extremities is common but often resolves itself upon completion of Brentuximab treatment. (1)
In certain cases, your doctor may prescribe a G-CSF medication to encourage the bone marrow’s production of white blood cells. (2)
How to Manage Side Effects of Brentuximab Vedotin:
Stay hydrated.
Eat small meals throughout the day.
Utilize meditation and other self-care relaxation techniques that work for you.
Other Possible Side Effects:
Skin irritation or rashes can be treated with topical creams.
Over-the-counter painkillers can help manage symptoms such as abdominal or chest pains.
Less common side effects may include inflammation, redness, dizziness, breathlessness, and bruising due to drops in red blood cell count.
Hair thinning and hyperglycemia are also possible side effects.
On the less likely end of the spectrum are:
Light sensitivity
High uric acid levels and fever
Internal pancreas inflammation
Liver toxicity
Reduced sensation in bodily extremities that may worsen throughout your treatment.
Rare Side Effect:
On rare occasions, Peripheral Neuropathy may occur, where the peripheral nervous system becomes damaged. However, many patients report that this dissipates when treatment finishes. (3)
Serious Risk:
The most serious risk is a life-threatening brain infection known as PML, which can be detected through behavioral and mood changes, memory loss, and a decrease in coordination and strength on just one side of the body. Please notify your doctor immediately if these signs occur. (8)
Because the medication affects patients to varying degrees depending on their course of treatment and level of disease, it’s important for those taking Brentuximab to pay close attention to their bodies and alert a doctor about changes in symptom expression. Based on this, a doctor may either adjust or halt your treatment altogether if needed. (3)
Brentuximab Success
Matthew Matasar, MD: Chief of Blood Disorders at the Rutgers Cancer Institute of New Jersey explains how the combination of chemotherapy with Brentuximab is “proving to be very powerful, safe, and highly successful at getting patients into remission or back into remission,” based on the positive outcomes of a 5-year study.
The drug shows incredible promise, with a total 38% of patients who achieved CR 13/34 on the medication reportedly remaining in remission for over 5 years or been fully cured, while an average 9 out of 13 patients moving into long-term remission.
Another study showed that patients with Stage 3 or 4 of Hodgkin Lymphoma who received A+AVD showed a survival rate of 93.9% when combined with chemotherapy, according to a study first reported by the New England Journal of Medicine in 2018. (7)
Other Studies
“This is the first time we’ve moved the needle on survival for Hodgkin lymphoma,” says Stephen M. Ansell, M.D., Ph.D., a hematologist and oncologist for Mayo Clinic Comprehensive Cancer Center in Rochester, Minnesota, who also led a Brentuximab CD-30 study.
“The impact on overall survival with Brentuximab Vedotin plus AVD chemotherapy is somewhat surprising,” continues Dr. Ansell. “It does confirm that the use of novel agents in the frontline treatment of patients with Hodgkin lymphoma has a long-term impact.”
Most patients in their study, 85.6% of whom experienced peripheral neuropathy in the A+AVD group, had complete resolution or amelioration of symptoms by final follow up.
In the ECHELON-1 6-year study, in which the classic treatment of ABVD (Adriamycin, Bleomycin, Vinblastine, and Dacarbazine) was measured against the newer BV-AVD (the same combination but replacing Bleomycin—a lung aggravator— with Brentuximab) in advanced cancer patients, the latter showed to greatly increase survival, reducing risk of death by 41%. (6) (7)
Final Words about Brenuximab
Matthew Matasar, MD refers to Brentuximab as a “new and improved standard treatment” that is “a better tool to cure more people and help them live longer.” (9)
Thanks to global efforts pushing the envelope on cancer research, the science and technologies emerging with Brentuximab are creating a world in which all stages of Hodgkin Lymphoma are curable.
To think even 60 years ago the disease was considered terminal, to now have a modality that directly targets and destroys Lymphatic cancer cells, is groundbreaking. And, with over-the-counter ways for managing the most common, mild Brentuximab symptoms being available, medicine continues to open doors for patient success and a brighter future for all.
- https://www.adcetris.com/classical-hodgkin-lymphoma/patient-stories/
- https://www.cancerresearchuk.org/about-cancer/treatment/drugs/brentuximab
- https://www.mayoclinic.org/drugs-supplements/brentuximab-intravenous-route/side-effects/drg-20075154?p=1
- https://medlineplus.gov/druginfo/meds/a611052.html
- https://www.mskcc.org/cancer-care/patient-education/medications/adult/brentuximab-vedotin
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8247884/
- https://www.nejm.org/doi/full/10.1056/NEJMoa2206125
- https://www.oncolink.org/cancer-treatment/oncolink-rx/brentuximab-vedotin-adcetris-r
- https://www.thepatientstory.com/medical-experts/latest-in-hodgkin-lymphoma/
Please note that while these sources provide reputable and up-to-date information, it is always important to consult with your healthcare professional.
Brentuximab Vedotin Patient Stories
Delishea A., Hodgkin's, Stage 4B
1st Symptoms: Extreme itchiness and dry cough
Treatment: 6 cycles of chemo, radiation, immunotherapy (Adcetris)
Topics: Finding community & support, self-advocacy
...
Emmanuel S., Relapsed Hodgkin’s
Symptoms: Enlarged lymph nodes
Treatments: Chemotherapy: ABVD, ICE; autologous stem cell transplant; Targeted therapy: Brentuximab
...
Fabiola L., Hodgkin's, Stage 2BX
Cancer details: Stage 2 with bulky disease, relapsed after 1st chemo. Remission after 2nd chemo & bone marrow transplant
1st Symptoms: Shortness of breath, dry cough, fatigue
Treatment: ABVD chemo (6 cycles), IGEV chemo, bone marrow transplant, BEAM chemo, brentuximab
...
Katee P., Hodgkin, Stage 2B
Cancer details: Accidentally found in x-ray after months of symptoms
1st Symptoms: Night sweats, fatigue, extreme itchiness, persistent cough
Treatment: AAVD chemo, clinical trial w/brentuximab (Adcetris) + nivolumab (Opdivo) immunotherapy
...