Chemo Side Effects and Reducing Doses
Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology, Social Work
JUNE 09, 2022
As we all know, side effects from chemotherapy are highly variable. One of the most dreaded ones, hair loss, is completely dependent upon the drugs. That is, certain chemo medications (like Adriamycin) guarantee baldness while others rarely affect hair. Most side effects, however, are not consistent person to person, and it is impossible to predict how difficult they may be for any one individual. Over previous decades, medications to ameliorate nausea have become highly effective, so the dreaded night on the floor of the bathroom is now a very rare occurrence.
A study reported...that 97% of oncologists speak with their metastatic cancer patients about side effects at every visit.
When someone is being treated with adjuvant chemotherapy—chemo that is given shortly after diagnosis with the hope of curing (although that word is likely never going to be used) cancer—it can feel as though the side effects are much worse than the disease. Be reminded, however, of the context here: someone receiving adjuvant therapy has not been sickened by the cancer itself as it was caught at an early stage. I have told many patients, somewhat tongue-in-cheek, that your doctors don’t care how sick they make you as they are trying now to cure you.
Sometimes, if the side effects are too much to bear, adjuvant chemotherapy doses may be reduced. More often, however, the strategy is to carry on, pull up your socks, and do whatever is necessary to somehow get through it. For most of us, these are unpleasant, but definitely not intolerable, months.
The situation changes if someone has metastatic/advanced cancer. At that point, the cancer is treatable, but not curable, and a lot of attention is paid to finding the best balance between quality of life (QOL) and fighting back the cancer itself.
A study reported at the San Antonio Breast Cancer meetings said that 97% of oncologists speak with their metastatic cancer patients about side effects at every visit. Since most people with advanced cancer will be on one or another treatment for the rest of their lives, this becomes very important. It can also quickly become complicated as patients, as well as their doctors, want to live as long as possible and are wary of making any treatment changes that might affect that goal.
Another study confirms the importance of these conversations. This one seems particularly interesting as it was directed by patient advocates from the Patient-Centered Dosing Initiative. They distributed a confidential survey to women with metastatic breast cancer via social media and other online forums. Developed by both patients and medical oncologists, the questionnaire asked about the prevalence and impact of treatment side effects and whether these concerns were discussed with their doctors.
The findings were that 86% of patients had experienced at least one significant side effect, and that 83% of them felt better after a dose reduction. Remembering that any new treatment is begun at the recommended (via the findings of clinical trials) dose, it is not surprising that individuals had widely variable reactions and very often felt much better at a lower dose.
It is really important to remember that no oncologist is going to suggest a lower dose than she thinks will be useful. No one is interested in treatment that is destined to fail because the dose is inadequate. If an individual continues to experience intolerable side effects at a lower dose, it is more likely that a treatment change will be recommended than lowering the dose even more.
It is also important to remember that it isn’t necessary to be scared of a new medication. Of course, there is worry about what might happen and any possible side effects, but remind yourself that they are mostly manageable. If not, a possible dose reduction may still enable you to receive the drug without compromising your quality of life.