I am glad you contacted the site. We are a small group of people affected by LCS . WE help eachother by sharing information and reports for our doctors and give eachother support when needed....
My advice is that you ensure you have a team that specialises in Sarcoma. It seems to be the advice we all have stuck to as this is so RARE that you want your doctors to be on top of it at all times. Seems that Penn State is a teaching hospital???- so I would assume they have a very good Sarcoma Unit.
We were the first case in Australia! Lucky Daniel. A puzzle to our Sarcoma Team and still are!
Seems that the preferred chemotherapy regimen is CHOP. Many on this site have been treated with it.
Looks to be that you are in Pennsylvannia, USA...correct?
Try not to worry PaT. I know that seems hard at this stage of the treatment, so much fear , anxiety. This is a very treatable cancer. From what we have worked out here on the site, it seems to choose very different primary sites on everyone. Your husband has lymph nodes , many have neck lymph nodes, some like Daniel have Bone, others have had spine ...but it seems to prefer lymph glands. LCS is very responsive to chemo and most of us on here have also tried complimentary things like diet change, chinese herbs, etc with great results.
wish you well and hope the next few months go well for you. Keep in touch and let me know if you need any reports to share with tyour team for comparison. BTW, we were diagnosed by Ronald Jaffe in Pittsburg childrens hospital as our Australian team wanted his opinion- pathologist- expert in Langerhans cells !!
send me your email if you want the reports.