Diagnosed with sarcoma? Let's share

I just completed 25 Proton radiation treatments at Mayo Phoenix - very little adverse affects mine tumor is in my calf the size of a Soft Ball - the treatment themselves is painless and takes any minutes - the side effects for me were some fatigue usually about 1 day a week I felt like It just wanted to nap - during the treatments no adverse effects to my skin - but I am on week 2 after treatment and I have a mild sunburn which is am treating with Aloe Vera - I used a radiation burn cream all during treatments - the saying is you might be done with Radiation but it is not done with you so expect some issue after completion - The calf feels like an internal sunburn which I find ice helps - We have a pool and the temp is currently 70 degrees and standing in the cold water really helps
The care at MAYO is best of the best - you should check in with them there are places available to stay that are very low cost right at the hospital - the difference with MAYO is that I have a full cancer Board - A surgeon, radiologist, oncologist, plastic surgeon and a Physical therapist they consult constantly on my case to determine best treatment plan for my type of cancer no chemo was recommended as studies show it is not effective where Banner Health immediately told me to start Chemo
Hope this helps and best to you and your son

Give you call doctors warts, you won't regret it.He's the best Doctor I've ever had.He saved my life

I don't know if it helps or not. But Doctor Herbert Schwartz at the Vanderbilt clinic was the only Doctor out of about 20 at skyline hospital that sent me to Vanderbilt I had a 13.5 cm sarcoma. Tumor on my femoral artery. Several doctors at skyline said Id die on the table. He didn't hesitate.My wounds not completely healed and I'm still struggling I worked in the garden yesterday and paid for last night, but I'm doing a MRI in a cat scan next month every 3 months.the best doctor I have ever had .Im cancer free after 10 years

I appreciate it.

I wish I could offer you something that might be helpful, but I have no experience with cancer treatment except for a spot of Basal cell carcinoma on my temple several years ago. I did recently look into whether Duke Cancer center, which is near me had a proton beam for radiation treatment.

Have you tried Mayo Clinic or St. Judes? I think St. Judes does have the proton beam, but am not sure.

I sure hope things go smoothly and that you get good support from the support groups. I wish I could offer more. I hope blessings are ahead for your boy.

@celia16 Thank you so much. Things have needed to move so quickly that we haven't had a 2nd opinion. I was looking into the Mayo Clinic. Have you had any experience with the targeted Proton beam. I imagine, we don't have that technology here in Boise but I'll be asking. It's hard to watch your child suffer. It still feels like it should be us as his parents. This is my first experience with a support group. I'd welcome any suggestions on support or finding sarcoma experts. I do trust our doctors so far. That has been a surgery and meeting one pediatric oncologist. They have a whole team of pediatric oncologist.

I’m sorry to see this about your son. That sounds very stressful. Do you have support around you? I hope the treatment next week goes well. I’ll look forward to seeing how things go next week. Sending positive thoughts your way for you and your son.

I just saw your post. How are you doing? Good to see your care is excellent. That means a lot. Sending you warm, well wishes!

Rhabdomyosarcoma * 13 year old son Boise Idaho.

My 13 year old beautiful son has Rhaddomyosarcoma. He had surgery on his cheek last week. We get a port this week and chemotherapy the following week. We are in Boise, Idaho.