Jane is a ten-year survivor of a very rare form of cancer Myelodysplastic Syndrome. She has enjoyed several exciting careers including a librarian, counselor, teacher, and writer. She loves to write about surviving cancer, overcoming hearing loss, and her hearing ear service dog, Sita.
There are dozens of potential side effects, and more are being reported every month.
I have a blood cancer and will always be on chemo. I was told this from the beginning of my diagnosis. As one could predict, the effects have worsened over the past eight years. I have continuously been on chemo and more side effects seem to pop up each month.
Recently, my understanding oncologist took me off all chemo temporarily because my bone marrow biopsies, which I have every six months, remained unchanged and the cure seemed worse than the disease. I feel much better than I have for a long time. However, I know eventually I will have to go back on.
I became curious because other cancer survivors have shared with me that they had experienced side effects for years after they were completely off the chemo. I did some research and tried to check out reliable articles from the following agencies including: the American Cancer Society; Health Line; ASCO; the Mayo clinic; CURE; and Very Well Health. What I discovered was amazing.
There are dozens of potential side effects, and more are being reported every month. Obviously, not everyone gets all of them, and some fortunate people get none. Many of us get a few. But most of the above agencies agreed on the most common side effects.
One of the most startling potential side effects is cardiac problems due to both chemo and radiation therapy, which can affect the heart muscle. Also, fatigue is mentioned by almost every organization without fail. Chemo brain or fog is being recognized.
For younger patients, infertility can occur. Hearing loss is experienced by many patients and hearing screening should be done. Peripheral neuropathy is also common and sometimes can be permanent. Osteoporosis is common in women, who should have bone density tests to confirm or deny.
Unknown to me, cataracts can develop and after a CURE contributor wrote about this, I made my eye appointment! Dental problems and dry mouth from the chemo is also common. Digestive problems and irritation to the stomach and esophagus can happen. Chronic diarrhea is also another irritating result of chemo. Radiation can cause scarring in the lungs. And, of course, we all know about nausea and hair loss. Some cancer centers, like the one I go to, have a lymphedema team to help survivors who develop this complication.
Another side effect little mentioned is irritation to the kidneys and bladder, which can lead to increased urinary frequency. For those of who have made those frequent trips to the bathroom like me — now they tell us!
Glucose levels in the body can be affected, thus causing or worsening conditions like diabetes. Tired and achy muscles that cramp and limit walking is also a miserable possibility.
I also culled out some information on the longevity of these complications. The Mayo clinic admits that cancer survivors might experience late effects even years later. The American Cancer Society states that while many side effects go away quickly, some may take months or years to dissipate.
Stan Gerson, M.D., director of University Hospital Seidman Cancer Center in Cleveland, states that all major cancer centers now have informed consent to alert patients to immediate and long-term effects.
I write this not to discourage other cancer patients, but to encourage them. Survivors need to be their own advocates. It is absolutely impossible for your oncologist to predict the effects on you. We are all unique, which makes it very hard to determine what is going to happen — but also makes us special!
What we do need to do is be honest with our doctors, both family practitioners and oncologists, and let them know what is happening. Your chemo nurses are a great reporting source also — in fact anyone on your chemo team may be able to help. I suffered for months with gastric problems before finally mentioning them to my oncologist. She referred me to a gastroenterologist, who discovered ulcers in the stomach tract. One little pill cured the problem, and I sleep much better at night! My audiologist conducts regular hearing tests since I have been deafened from chemo. My dentist prescribed a specific oral mouthwash to keep my mouth from getting too dry.
I get it — we all are so sick of medical appointments and going to doctors, we just cannot face one more commitment. I also hate to mention one more symptom to my oncologist, because I do not want to be perceived as a whiner. It is easy to put off regular checkup and we are all probably guilty of doing it. However, we need to do our research and be vigilant.
Most of all we need to be honest and talk to our team. After all, this can save our lives, helps us to live longer and to have a better quality of life. This makes it all a win — win!