Diagnosed with sarcoma? Let's share

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.

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.

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.

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.

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 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.

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.

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

From what I understand the first surgery mass was in the femur bone, 15 CM was removed along with the hip Ball. Now there is another mass that is on the same side and on the pelvic bone? The mass has started to grow around the steel replacement previously put in. So I am confused here she was in 10 hours of surgery, it seems like to me the missed a mass it had to be there prior to the first surgery. What I am saying is the mass is already growing around the steel replacement this is in less than 6 months so it had to be missed. Now they don't want to do surgery again to remove it? Makes no sense to me, there reason is to shrink the mass. or get her pain under control. Well the mass is causing the pain so eliminate the mass eliminate the pain. Finally someone is on the same page as me. Shrink or remove the mass then the pain will decrease. So they are doing isolated radiation to shrink the mass. Problem is she is so fatigue from the radiation. I certainly don't want to loose her from treatments either.

She is doing better as far as the pain goes. They have been doing isolated radiation on the mass. However seems to be draining her. I was trying to get her into North Western in Chicago or Mayo don't want to loose her over not getting proper treatment. You really don't know how precious life is until someone you love could be taken away. I have a donation site up not having much luck, Have any ideas?

Robert