Finally met with my new oncologist, chemotherapy starts on the 9th.

[u/WrapImpossible9451]

I have Epithelioid Sarcoma that is almost 9 years old. (It was misdiagnosed any only just found)

My new oncologist is supposed to be the leading expert in our state on sarcomas. She confirmed that it has metastasized in my lung, along with a new tumor on my left elbow.

They want to go travel to the hospital near my oncologist on the morning of the 8th. They will be putting a port in my chest and doing scans to see what has changed since my last one last month. Then I will be staying for the week in the hospital while they do my first round of chemotherapy. (I have extremely complex health and they have no idea if I could react badly)

I'm so nervous. There is so much to prepare. Especially for my little boy.

What have been your experiences with chemotherapy? What is something smart to eat before, since I know I will probably get sick.

Just so much to think about and not much time.

[u/jay-aay-ess-ohh-enn]

I did AIM (doxorubicin + ifosfomide) for 4 cycles this year.

I had nausea but no vomiting, so i pretty much ate normally until the mouth sores were too painful. After that I ate less solid food and more smooth soups and protein shakes. The pharmacy at my hospital stocked High Calorie Boost that I could buy for 50% of what it costs on Amazon. Mouth sores are definitely a thing, but my throat problems might have been worse than most people's because my tumor was in the muscles that control swallowing function.

Despite the nausea, you have to eat to keep on your weight and maintain your energy. Your oncologist should give you meds to help control the nausea. Make sure that you pay attention to your symptoms and talk to your doctors about anything that gets uncomfortable. They don't always give you everything available at first, but they can make suggestions or change your meds if you are proactive about communicating with them.

[u/Lamlot → u/jay-aay-ess-ohh-enn]

I had 6 rounds of the same. My doctors said if I am eating, that’s good. While they wanted to have it be healthy, if I could eat a McGriddle that’s good

[u/WrapImpossible9451 → u/jay-aay-ess-ohh-enn]

Thank you so much! One of my many health issues that I deal with is ulcerative colitis. So I'm very worried about the nausea and my ability to eat which is already pretty bad right now. But my doctor has been experimenting with different medicines to help try to get the nausea of the control.

I'm definitely glad the first round is happening in the hospital, that way if I have any weird symptoms I can immediately speak to somebody.

[u/Fransaskois]

I’m sorry to hear that you’re being nailed with a ton of shitty news all at once. Try to focus on the things that are in your control like you’re doing with food. When I went through the AIM protocol, I drank as many fluids and ate as much protein as possible. Oddly enough, I developed a type of lactose intolerance, as I bloated like crazy whenever I had dairy, which I figured out between cycle 2-3. Once I switched to oat milk, it was much better. I stayed as active as possible throughout my treatments, so I was running/walking whenever I could. I learned new recipes (I am a brutal cook, so my partner definitely appreciated this! Lol), read and did whatever I could to distract myself.

I went 7 months NED before a recent scan and I’m now stage 4 with mets in my lung and chest wall. I just finished round 1 of Gemtax protocol. I did have a bit of nausea, but I’d suggest to really get your team to find the right cocktail of medications to help you navigate that, as they had it perfect during my AIM chemo.

Should you get a booster for your white blood cells, be sure to take Claritin before and after your chemo. The bone pain it causes is quite intense.

Good luck on your journey and you’ve got a full Reddit cheering section rooting for you.

[u/WrapImpossible9451 → u/Fransaskois]

Thank you so much!

I'm trying to gather some things so I can distract myself more. I actually just learned that my brother and sister are going in together to get me an adaptive controller! I have not been able to play for more than about 10 minutes a day since my sarcoma got to about the size of a grapefruit. So I'm excited to try playing one-handed with a new adaptive controller.

I'm hoping I can find a good balance of medications to help with nausea because it's already really bad and I have not even started any actual treatment. Thankfully because of my ulcerative colitis, I'm kind of used to living my life with a certain level of nausea and stomach pain. So I'm hoping that will help me be able to find coping mechanisms.

[u/Successful_Hope4103]

🙏

[u/Just_A_Warrior]

How do you have extremely complex health,?

[u/WrapImpossible9451 → u/Just_A_Warrior]

I have 5 different chronic health issues that all do different things to my body. Like, my EDS causes me to get injured easily and apparently makes certain drugs not work right.