Diagnosed with sarcoma? Let's share

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.

...continuing radiation therapy with 4 more treatments to go out of 25. No side effects so far, except being tired. Have moderate to severe arthritis in lower back (lumbar 3-5) previously for 3 years or so. LMS is located in pelvis left side next to the psoas muscle close to my lower back. Pain in both areas enough for some mediation. No pain while sleeping or in a lounge chair. I've fallen several times in the last 10 weeks or so due to some pain and numbness in my left leg and with no consequences. I do use a 4-wheel walker. The biggest problem is trying to get up after falling. I am very pleased with the Kaiser system so far. My surgeon has a lot of experience with cancer patients. I've seen an oncologist, surgeon, my PCP, neurosurgeon, and pain specialists. In my opinion I am getting great care.

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I agree with staying optimistic - your body has amazing abilities to heal itself - I can't say enough positive things about the team at Mayo they have been with me every step of the way - I have a soft tissue sarcoma in my right calf the size of a soft ball - I have completed radiation - 25 treatments with no adverse skin issues - Surgery is May 5th and then can expect a long recovery to be able to walk unassisted - they say up to a year - I am already working with a Physical therapist to strengthen and improve flexibility -
One thing I have learned is to allow myself some time to just let is all out as well - a sort of emotional cleanse - do what your body tells you it needs.
I take curcumin 600 mg twice a day it is a good cancer fighter and anti inflammatory and I take milk thistle with it - also 20000 IUS of Vitamin D with Vitamin K

I have completed my 25 radiation treatments - and no adverse damage to the skin - I am scheduled for surgery May 5 - A flap of muscle and blood supply will be taken from my right quadricep to replace the muscle etc from my right calf - 7-10 days in hospital with the critical factor being the flap so ensure the blood supply is good and is healing properly - bedridden first 5 days and then slowly allowed to dangle the leg - surgery expected to take 10+ hours