When Chemotherapy Ends (unexpected side effects)

by

Jennifer Weir

[Editor's Note: Jennifer is the mother of three children: 14-year-old Michelle, 9-year-old Laura, and 6-year-old Kevin. Before having children, she worked in securities brokerage as a compliance officer and operations manager. She was becoming certified to teach  high school Biology, Anatomy, and Physiology in September 2003 when Kevin was diagnosed with Ewing’s sarcoma.]

So many times, we’ve been told that we should be grateful that our son’s chemotherapy protocol has come to an end. We are. However, everyone unfamiliar with cancer assumes that once treatment ends, the patient is fully recovered and can resume a perfectly normal life.  We wish.

When our 5-year-old son Kevin was diagnosed in September of 2003, with Ewing’s sarcoma of his right pelvic bone, our world was rocked. Somehow, someway, we all made it through a year of grueling chemotherapy, pelvic resection and bone graft surgery, a staph infection, numerous blood transfusions, five months of non-weight bearing on his right side, etc. We were also under the assumption that once treatment was finished, we would be able to relax, breathe easier, and enjoy life.  We wish … for Kevin’s life is far from carefree.

We knew surgical recovery would be long.  Once again, we are grateful that our son’s wound and bone graft healed while he was on chemotherapy … highly unusual we have been told. Kevin walks with a limp, has sporadic pain, and is undergoing physical therapy in attempts of strengthening the muscles that had been partially resected around his pelvic bone. He becomes very discouraged when trying to play a simple game of tag with his friends … he just cannot keep up. While we are thrilled that Kevin can walk, we are saddened by his limitations. This once very athletic little boy tends to sit on the sidelines, at times looking very defeated.

In the spring of 2004, we began noticing that Kevin was always turning the volume up on the television, and sometimes did not hear us when we called him.  We were never sure if he was just tuning us out … after all, we had spent a great deal of time together during Kevin’s treatment, and maybe, he was just tired of us. He would also call for us from his bed – this was during the “non-weight bearing period.” I would always answer with “I’m coming”, but he seemed panicked by the time I arrived. Apparently, he never heard me. I brought this to the attention of Kevin’s oncologist, and he ordered an audiogram. We learned that Kevin has suffered permanent, sensorineural hearing loss associated with the massive doses of intravenous antibiotics he had been put on during times of fever and neutropenia.  He has been tested again, and his hearing loss was slightly worse – in the mild to moderate category, still not too bad. Recommendations from the ENT specialists are that Kevin should continue to have his hearing tested every 3 months. They have already recommended preferential seating for Kevin in the classroom, and have said that Kevin may eventually require hearing aids. The assumption is that Kevin’s hearing may very well worsen over time. While this is certainly not as devastating as a cancer diagnosis, it is yet another obstacle our once healthy son has to overcome.  As with everything with Kevin, we are told that this side effect is “highly unusual”, since the blood levels of the antibiotics he received were monitored very carefully.

It has also been revealed, on regular scans, that Kevin has several nodules on his thyroid gland.  We do not know the long-term implications of these nodules.  Recommendations from the endocrinologist are that Kevin have his thyroid function tested regularly, and have an ultrasound of Kevin’s thyroid gland performed every 6—12 months.  Kevin will be having another ultrasound in the coming weeks.  The presence of these nodules probably has nothing to do with Kevin’s treatment, nor his cancer, but it is something else that will need to be watched.

Our most recent, and serious, scare has come from a diagnosis of cardiomyopathy. Kevin’s clear scans in October, 2004, came along with something else “to discuss.” Kevin had already had a poor echocardiogram after just two treatments of doxorubicin.  That drug was suspended for a while, but as Kevin’s oncologist let us know, doxorubicin is the drug of choice against Ewing’s sarcoma.  We were all hoping that Kevin’s tumor would be 100% necrotic when he had his surgery. Unfortunately, it was not, so the need for doxorubicin was still present. Kevin received three more rounds of doxorubicin, and his echocardiograms had returned to normal. However, his first echocardiogram following the completion of chemotherapy revealed cardiomyopathy—a weakening disease of the heart muscle, and most specifically, the left ventricle in Kevin’s case. The very day we learned of Kevin’s heart condition, he had started to experience shortness of breath (and this was before we had seen the doctors that day).  Kevin has been referred to a pediatric cardiologist, as he now becomes a long-term cardiac patient. The cardiologist will most likely put Kevin on heart medication at some point, which will work for a while, we were told. Presently the medications available only work for a limited period of time, and no one knows how long they will work for Kevin … after that, a heart transplant may become necessary. Almost unthinkable, given everything our son has already gone through. Once again, this is considered to be a “highly unusual side effect” of chemotherapy treatment. Only about 5% of those on doxorubicin show signs of heart problems – most are revealed many years following treatment, and only a handful of the heart problems ever become severe enough to warrant a heart transplant.

Another common assumption from those unfamiliar with cancer is that once treatment is completed, the patient is cured of their cancer. God knows, we hope this to be true.  Because of Kevin’s intermittent pain and increasing limp, he had another bone scan, earlier than originally planned. The scan revealed a few “hot spots” on his pelvic bone—very scary in the world of bone cancer.  The good news is that Kevin’s oncologist and orthopedic oncology surgeon both believe that those spots are due to inflammation, as Kevin is so much more active than they ever thought was possible. They will continue to watch, however, and closely monitor Kevin’s complaints of pain.  Statistics-wise, we can hardly rest easy.  Chances of relapse are far too great for us to feel relief.  I hate being in this place, and wish I could resume being an easy-going mom, but it’s just not that simple.  However, in spite of all of these “unusual” long-term side effects and our ongoing fears, our funny, adorable, little boy is still with us, and we will be forever grateful for that.

V2N1 ESUN Copyright © 2005 Liddy Shriver Sarcoma Initiative