Trish from Orange County, California says, “Don’t fear it. Chemo has a job to do and sometimes we may not like how that job makes us feel.”
The Standard Protocol for OS Treatment The Children’s Oncology Group (COG) protocol for osteosarcoma is MAP chemotherapy. MAP stands for the chemotherapy agents (M) methotrexate, (A) adriamycin (also called doxorubicin) and (P) cisplatin (also called platinol). The MAP regimen consists of 2 cycles which lasts 10 weeks. Surgery recovery is followed by 2 more cycles of MAP (10 weeks) and then 2 cycles of MA (8 weeks). The final 2 cycles do not include “P” as usually the maximum lifetime dose of cisplatin will have been reached. Many doctors do warn that the timeline indicated is if there aren’t any delays- which is very rare.
While the above is standard protocol, there are many reasons doctors may decide to deviate from this, including size and number of tumors, the health of the patient, age of the patient, etc. Do not be surprised if this protocol changes. Treatment is not one size fits all and changes occur when the established protocol does not work well for a patient or a specific situation.
Know that it is likely you or your child will experience at least some side-effects. Keep your team well informed, there are many different options to combat side-effects; if one doesn’t work, they can try others.
Morgan from Montana says, “Everyone is different in regards to what chemo works and how much they can have. While there are protocols for OS, nothing is black and white. I’ve had chemo I handled well and another chemo that I ended up having to stop.”
Chemotherapy after surgery is called adjuvant chemotherapy. This chemotherapy is used to continue killing any osteosarcoma cells that may be left in the body after surgery. These cells could remain due to poor surgical margins (cancerous cells on the edge of the surgical site that still remain). More commonly, there are cancerous cells moving through the blood to other areas of the body. These cancerous cells get into the bloodstream via the blood vessels that feed the tumor. These microscopic, malignant cells, called micro-metastases, are present in the majority of patients at the time of diagnosis. The adjuvant chemotherapy is used to kill these cells and prevent any further metastases from taking hold in another bone or the lungs. Since the addition of adjuvant chemotherapy to osteosarcoma treatment, the relapse rates have decreased. So, while chemotherapy is difficult, it is very necessary to keep the osteosarcoma from returning
Emily V. from Wisconsin suggests, “When going through treatments, distract yourself. Don’t fuel the flames of anxiety and depression. Try new hobbies, watch foreign films, do anything and everything that makes you feel wonderful and happy.”
The first chemotherapy treatment is scary for everyone. That is normal. We all have heard stories about how horrible chemo is, but it is a necessary part of the treatment to address osteosarcoma. Before most chemotherapies are administered, there is a regimen of pre-medications or preparation. It may be as simple as liquids to fully hydrate the body or establish a certain level of pH to help flush the chemo from the body safely. Most of the time there will be pre-medications to help minimize the side effects like nausea. For some chemotherapies, there will be premedications to address some of the more harmful effects chemotherapy can have on other organs or parts of the body. For example, prior to doxorubicin, a premed of Zinecard maybe given to help protect the heart muscle.
For osteosarcoma, the first treatment is usually a combination of two chemotherapies, doxorubicin, and cisplatin. Both of these are very strong chemos and have their associated side effects. The first thing most patients notice is the color of doxorubicin (nicknamed “the red devil”). It is a reddish orange color. For some patients it is difficult to look at and see that color of liquid flowing through the tube into their body. One trick many have used is a pillowcase over the bag as it hangs on the IV pole or moving the IV pole behind the patient leaving it out of direct sight. Of note, the doxorubicin goes in red/orange and can often stain saliva, tears, and urine with the same red/orange color.
While most anticipate nausea as a side effect of chemotherapy, it doesn’t happen immediately for most patients. It may be several hours or overnight before it hits. Even then the severity may vary patient to patient. The doctors and nurses have several medications that can help combat nausea. If one doesn’t work they will add or replace with some of the alternatives. Some do cause drowsiness, but that is not a bad thing for some patients as it helps them pass the time of the chemotherapy delivery more rapidly. When awake your child may find activity helps delay the onset of nausea... laughter can be the best medicine. Playing a game, becoming engrossed in a really good movie, using guided imagery to ‘take a trip somewhere else’, or doing homework can delay nausea a little. None of these activities will avoid it. Nausea can be impacted by how well your child is doing overall. How well your child is feeling will impact his/her interest in participating in activities. Trust your child. Encourage your child.
The length of stay for many hospitals will vary based on the particular chemotherapy treatment being given. There are also different policies and procedures based upon the hospital. Some hospitals do nearly all treatments inpatient and others allow patients that are tolerating therapy well to go home each evening with hydration IV’s and medications for the evening. Doctors will monitor the side effects and make sure they have these under control before releasing them from the hospital. If side effects are not well controlled please contact your doctors to address these concerns. For methotrexate, the treatment or dosage is administered in a single IV session. However; patients receive a rescue drug, Leucovorin, until the level drops below a threshold set by your team, this can vary from team to team so discuss details with your own team. This is determined by a blood test drawn once a day or more often. For some that is as quick as 2-3 days, but we have heard of cases that took over 10 days to drop below the required level. If it helps you to understand why this important - ask questions. Your treatment team can explain the rationale for long stays while waiting for chemo to clear - remember your child may feel pretty good during this time yet it may not be ‘safe’ to be discharged. Most patients try to determine what will help lower their methotrexate level the quickest as getting out of the hospital is such a relief. Most come to realize that staying well hydrated, urinating often and staying as active as possible help – there is not any magic trick, it takes time and patience for your body to rid itself of the methotrexate.
At home, it will be helpful to have items of support for your child that will make everyday tasks easier. Even if you choose not to use them, you won’t know if, and when, you will need it until the moment arises. It is not unusual for your warrior to not want to be confronted with the items mentioned below until they are absolutely needed. They are a tangible reminder of their illness. Many families find that keeping them out of sight, until needed, is a way to protect their warrior’s state of mind. Items that may be helpful or necessary at some point:
If the bedroom or bathroom is not on the ground floor then determining how to modify the house arrangement temporarily or how your child will move from one floor to the next will need to be considered. Determine a method that your child can get your attention anytime in the day or night. Some people have their child sleep near them or use a baby monitor or bell - you will want a way for your child to let you know they need you.
Montgomery suggests, “It is a long and hard process but time goes faster than you realize!”
*No two osteosarcoma patients are the same, therefore there is no substitute for the expert care of your medical team. This is not meant to replace the guidance of your oncology team. It is meant to share resources, information and support.