Our members have contributed to the content of this page in the hopes of giving you ideas to discuss with your doctors. Make sure and communicate with your health care team about your side effects. Some side effects are typical, and some are more serious, so communication is important.
UPDATE: I recently co-authored an article that includes this information and more. It's called
Dealing with the Side Effects of Sarcoma Treatments. Please check it out!
FatigueMany of us had extreme fatigue while dealing with chemotherapy and radiation. Unfortunately, there is not much to do but get plenty of rest and communicate with your doctor about how you feel. We were given:
- Neupogen shots raise white blood counts and often boost energy.
- Blood transfusions are given when hemoglobin levels are very low, and these tend to boost energy levels. A blood transfusion doesn't sound like fun, but our members who have had them loved them!
Hair LossHere are some of the things we did to deal with hair loss.
- Make a decision about when you will shave your hair off and stick to it. Some people do this before they start losing it, and some wait until different times in the process.
- Throw a shaving party, or take a friend with you to a hairdresser.
- Get creative - some girls use temporary tattoos on their heads, glitter, etc.
- Some of our members tried wigs, but most ended up going with hats, bandanas, or the natural look.
- If you're at risk for bleeding when you need to get rid of your hair, talk to your doctor. Options include hair clippers or a beard trimmer. The key is NOT to use a bladed razor.
Mouth SoresTreatments we were given
- Daniel's solution is a mouth wash. A patient can swish before, during, and after treatment. It tastes pretty good, but sometimes can be hard to keep in your mouth.
- Swish and Swallow solution - it is reported to taste horrible.
- Mircacle Mouth Wash (lidocaine, benadryl, maalox) provides short term relief that will allow some time for eating.
- Peridex (chlorhexidine Gluconate 0.12%) is a mouthwash used about four times a day to prevent mouthsores.
- L-Glutamine is used for treating and preventing mouth sores. It can be mixed with water or juice, swished and swallowed to go through the digestive system.
- Lidocaine gel can be used for sores at the other end of the digestive tract
Foods we avoided eating
- sour things
- things that need to be chewed
Foods we managed to eat
- popsicles
- pudding
- jello
- icecream
- baby food
- apricot or peach juice
- strawberry milkshakes
Another helpful tip: Try using a baby toothbrush because of its softer bristles.
NauseaWe all had different results with medications, and sometimes they were used in combination. Here are the medications that helped us:
- ABH (a combination of Ativan, Benadryl, and Haloperidol)
- Anzamet
- Ativan
- Emend
- Phenergan
- Sancuso Patch
- Zofran
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