Diagnosed with sarcoma? Let's share

Hi Jeff,
Thanks for checking in and congratulations on your upcoming anniversary and strong recovery! How goes your running? I am doing well. In two weeks I have my first scan since surgery 6 months ago and I'm hopeful that it is clear and all is well. My voice quality is not much changed, so I'm going to see a speech/lang therapist next month for an evaluation and see what options there might be to improve that. Take care and continued good health to you! Deb

Hi. I have been battling myxoid liposarcoma with round cell for 6+ years. Mine has around cell component. Mayo is the best. Radiation has few side effects. I would get tired more easily. Towards the end of treatment you may have skin breakdown. Myxoid responds well To radiation. You should have good results. Stay positive. It's a marathon not a sprint.

I am getting daily radiation. I am on Day 3 today. Surgery should be somewhere in December if all goes well. I am meeting with the surgeon tomorrow.

When I had my 25 sessions of radiation, I would go to the gym and do a workout. It kept me from fatigue and my mind occupied. Just a thought to keep yourself strong for your upcoming surgery

I was referred to the local (teaching hospital which has the current information and equipment. I got a lot better treatment there. The doctors were specialists that worked as a team. If I had not had the referral, I would have had to make appointments with them each a few months apart, for far more money and better care. Ask your doctor about it.

Hi,

He just got home today on his 52nd bday (4 days inpatient) from second chemo treatment of dosage of methotrexate. He endures the chemo well like last time with main effect fatigue (no nausea). This time they pump tons of fluid through and agressivly monitoring so he is up every hour which is hard with good sleep deprivation. He says hardest is being lonely in hospital as it's an hour away. The first round I made it down after work and was shorter stay. Difficult when you work full time and have 2 kids to try to keep as normal a schedule as possible for them. After the first round he was doing great and all the sudden a week and half later his hip pain went from 3 to 10 and couldn't stand. Some pain meds and 3-4 days and it was gone. The are not really sure why it seems. It was scary and I hadn't read about that happening overnight. So far though things are going well. I think the next round they may let him wear a pump and do it at home. Mayo second opinion came and they are in agreement with current treatment plan.

I'll check out the last link and happy to help anyone.

Hi, I've posted on a few other groups here. I'm still trying to find out all of what I have & how to treat it. When I was waiting 2 hours for my orthopedic oncologist a sweet nurse came in with a huge sarcoma note book explaining how to use the book for access to help. My ortho saw it & said nothing. After a 7 minute meeting he sent me for 30 minutes of more x-rays, then a 2 hour 40 minute wait for a 3 minute appointment where he said he couldn't tell by x-ray if the bone caner (in 90% of my body) has improved since my radiation or gotten worse. He never answers my question's except to tell me I'm not a candidate for surgery even though I have a few broken bones. The next doctor I saw ( within minutes) asked, "Why do you have that book? You don't have sarcoma." I can't remember if it was my brain tumor doc or my endo onco doc. So I just sat the book aside when I got home a few days later. I still haven't wholly accepted this, I guess.
Maybe I need a better team or better communication. Well it just dawned on me! I can just call Sarco even if I don't "fit" they should be able to answer if I have it. Just reading some of these posts today I found out there's different kinds of sarcoma! It started in my thyroid b4 2006. They just found it last year. It's in my pancreas & I've never seen a doc for THAT part. The MRI, or is it a CT, lights up over 50% of my face/head & I haven't seen anyone for that either. The radiation/iodine uptake causes all the cancer to show. It's very poor quality- smudgy screen & print. Is this considered average care or below average...normal? Is it my lousy Medicaid insurance? The doctors? The extent of my Stage IV? The fact I'm 60? I'm in a very rural town without support groups. I'm due for my follow up radiation/iodine uptake soon to see the results of the oral dose. That's all the treatment I had almost a year ago. Just posting today mad e my brain click to call the sarcoma office. Thanks for being here.

Oh one doc said last year I have cancer in the soft tissues & synovial fluids & the like. I also just a few months ago found out the arthritis I have had for 20 + years is osteo. it's because of this I can't have surgery. I had 3 bone density tests in the past 2 years. All were high normal & there's no answer as to how this could be with powdery bones that are about to break. Any suggestions would help. I have no funds to travel.

Your support is very helpful and important to his treatment. He will be more carefully monitored when you reinforce him to the staff when he needs more attention, like the pain medications. When you are attentive to his daily condition (and let the staff know that), he will not get shuffled from one person to another and miss important care for his treatment and for his comfort. Please continue to keep him and his care close to your heart. I assure you it has and will do LOTS of good!

I am concerned that you have not received the results of the radiation test. Call or email every day to find out what the results were or if the test needs to be redone. Write down who you talk with at each phone number, what day you called and what you were told, word for word. I prefer email because it notes who the contact person was, what time, and I have Exactly what was said.

It is possible that the results came back negative, so the case was filed without notifying you. Still, keep track of who says what on what day, so that you will not have more than one person telling you they do not know, to try someone else. Or if you find out something, the same person is more likely to remember and help you with the next step. It really helps if you have someone else go to any appointments with you so that they can verify that information with anyone else you speak with. They can also help you remember and sort it all out.