The Cancer Survivors Network (CSN) is a peer support community for cancer patients, survivors, caregivers, families, and friends! CSN is a safe place to connect with others who share your interests and experiences.

Thank you for being a part of the Cancer Survivor Network community. Survivors and caregivers like you have played a unique role in fostering an online environment that encourages connection among those needing support, community, and education. On May 28, the Network will be discontinued. More details are available here . If you have any questions, contact CSNSupportTeam@cancer.org. Thanks again for the support you’ve provided each other over the years. We remain committed to supporting you in other ways throughout your cancer journey.

Fighting Rhabdomyosarcoma

Lilo
Lilo CSN Member Posts: 4 Member
in Childhood Cancers #1

Hello all,

My beautiful 1 year and a half old son was recently diagnosed with embryonal rhabdomyosarcoma in his middle ear. We have completed 4 cycles of chemotherapy and just discovered that the cancer has progressed. At first, his tumor showed great response to chemo and reduced significantly in size after just 2 cycles. However, new cancer growth from the original site was discovered in his last scans. The doctor suspect the growth was due to a subset of cancer cells that are resistant to chemotherapy. With the new early progressives diagnosis, we were given a 30% chance of survival. This is beyond devastating for the family. We will be heading down to Florida for his proton therapy in a couple of days. I would love to hear stories from people or caregivers who have fought or are currently fighting rhabdomyosarcoma. Any tips will be greatly appreciated as well.

Thank you all,

JP

Like 1Care

Discussion Boards