Diagnosed with sarcoma? Let's share

Did not sign in but now I have the knack, maybe next time.

hello, my name is Rocio, I am from Queretaro in Mexico, and I found this group searching through the internet since we are in shock and desperate looking for an answer or guidance because we do not know where to turn for this situation. My 4-year-old little cousin has been diagnosed with osteosarcoma in her bones, the news has been devastating, but according to the studies that have been done, the spots have appeared quickly on both of her legs. I would like help on where to go, in Mexico attention is precarious and in the country's capital the wait is very long for an appointment, I think we should act as soon as possible but we feel our hands are tied.

Hi @bicycle3, I'm sorry I didn't see your message until now. I hope you were able to eventually sign into the Zoom ostomy meeting. It's still happening now. Please Join Zoom Meeting here
https://mchealth.zoom.us/j/99659580974?pwd=VUdyZ0dQVmdxd3lCd0s4S0JzbnVvdz09
Please contact Candy Boyes, ARZMCOSTOMYSG@mayo.edu if you need help in the future.

Having trouble signing in to participate in zoom at 9pm for ostomy meet up.

I take pain pill every 4 hours. Also one that is slowly released. Also tylenol every 8 hours.
I am able to attend my weight training classes and dance classes and yoga all at the Y as I modify. Cycling and swimming are other loves. I have cycled on the flat Erie Canal trail and will try swimming this week. The ileostomy is my concern in the water.
The chemo made my hands and feet a bit crusty. My hair falls out a bit at a time so
I hardly notice it. It is not growing or thick as it used to be.
We will measure the largest tumor on the 31st to see how it is growing or?!?!?

I take pain pill every 4 hours. Also one that is slowly released. Also tylenol every 8 hours.
I am able to attend my weight training classes and dance classes and yoga all at the Y as I modify. Cycling and swimming are other loves. I have cycled on the flat Erie Canal trail and will try swimming this week. The ileostomy is my concern in the water.
The chemo made my hands and feet a bit crusty. My hair falls out a bit at a time so
I hardly notice it. It is not growing or thick as it used to be.
We will measure the largest tumor on the 31st to see how it is growing or?!?!?

@maria957, I noticed you wanted to post a link to a resouce for @rociovega. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is helpful. Please allow me to post it for you.

- Sarcoma Alliance https://www.sarcomaalliance.org/

Hi @rociovega, I would ask the pediatrician for referrals, oncologists for children, if available. Take it easy and study options. My friend (with another cancer, non curable) heard from a neighbour her mother had gone to a Doctor "xx" and recovered. I checked his name with friends and my clinical doctor. They all said that guy is a NO NO. He gives placebo and sells "hope". So thank god I could stop that nonsense.
Desperate is not good.
Go to doctors referred by doctors you trust.
Hope this helps, get two or three opinions. Sending all my love.

I appreciate your attention and any guidance regarding this disease. We are desperate.

hello, my name is Rocio, I am from Queretaro in Mexico, and I found this group searching through the internet since we are in shock and desperate looking for an answer or guidance because we do not know where to turn for this situation. My 4-year-old little cousin has been diagnosed with osteosarcoma in her bones, the news has been devastating, but according to the studies that have been done, the spots have appeared quickly on both of her legs. I would like help on where to go, in Mexico attention is precarious and in the country's capital the wait is very long for an appointment, I think we should act as soon as possible but we feel our hands are tied.