Langerhans Cell Sarcoma

Langerhans Cell Sarcoma

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42 Comments

Reply Maria Monteverde
6:40 AM on February 13, 2019 
Hope everyone is doing well. Been another 2 years since last update . All well with Daniel. How are you all going? Would love to hear...
Reply Maria Monteverde
6:08 PM on February 18, 2017 
2017 has arrived and Daniel is still doing well. Take care everyone and I hope this website has helped in some small way . Sometimes with a very rare disease or Cancer it is just comforting to know we are not alone.
Reply Maria Monteverde
6:48 AM on August 26, 2016 
Hi all,
Been a while since I posted on the site so I thought I would share some good news. Young Deryn from the UK is doing very well and I found this article on the internet about his amazing progress. He has grown into a handsome young man , been back at school since 2015 and is doing what he should...enjoying life and good health.

2 years ago I was contacted by Eric who lives in South Australia . There are now 2 cases of LCS in our country. WE have kept in touch and he is doing very very well too.

and as for my son Daniel, all is well and we are now over 6 years in remission!

Love to know how you are all doing....send us a line and share your experience with LCS so far and hope all is going well with all of you!
Reply Maria Monteverde
7:49 PM on June 8, 2014 
Pat,
How is your husband going with his treatments
Maria
Pat Roussel says...
My husband in Sept., 2013, was diagnosed with Langerhan's Cell Sarcoma in lymph nodes under his left arm. A Pet scan showed more cancer in lymph nodes on his left side, but it has not spread to other organs. We have an appt. with a doctor at Hershey Medical Institute and will know what kind of chemo will be used. Any information will be appreciated.
Reply Judy
6:58 PM on November 9, 2013 
Hi Pat,
My husband has LCS. He is now no evidence of disease. They don't use remission....even though we want to use the term! This month he is 3 years out of treatment. His cancer was found in a lymph node in his neck!! He had CHOP chemo and radiation. He is doing great! We go next Thursday for the 6 month scans and blood test!! If we can help in any way, just contact us. Our home email is rrmjlm@bellsouth.net We live in Tennessee, he was treated at Vanderbilt University!

Sincerely,

Judy Morgan

Pat Roussel says...
My husband in Sept., 2013, was diagnosed with Langerhan's Cell Sarcoma in lymph nodes under his left arm. A Pet scan showed more cancer in lymph nodes on his left side, but it has not spread to other organs. We have an appt. with a doctor at Hershey Medical Institute and will know what kind of chemo will be used. Any information will be appreciated.
Reply Maria Monteverde
5:58 PM on November 9, 2013 
Hello Pat,
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.
Take Care,
Maria




Pat Roussel says...
My husband in Sept., 2013, was diagnosed with Langerhan's Cell Sarcoma in lymph nodes under his left arm. A Pet scan showed more cancer in lymph nodes on his left side, but it has not spread to other organs. We have an appt. with a doctor at Hershey Medical Institute and will know what kind of chemo will be used. Any information will be appreciated.
Reply Pat Roussel
1:18 PM on November 9, 2013 
My husband in Sept., 2013, was diagnosed with Langerhan's Cell Sarcoma in lymph nodes under his left arm. A Pet scan showed more cancer in lymph nodes on his left side, but it has not spread to other organs. We have an appt. with a doctor at Hershey Medical Institute and will know what kind of chemo will be used. Any information will be appreciated.
Reply Anthony Hills
2:29 PM on October 8, 2013 
Hello Daniel and all,
I have Langerhans Cell Sarcoma and found your info on the web. I had a surgery on my neck to remove a tumor in July and it turned out to be Langerhans Cell Sarcoma. My recent PET scan results had a mix of good and bad news; the good news is that there is no active cancer anywhere in my body, except (the bad news), it is growing again in my neck. Based on this new information from my PET scan my Oncologist is recommending surgery to remove the active lymph node cancer. My surgeon believes that this next surgery will be beyond his abilities as the lymph node is embedded in deep and wrapped around the artery. Now I will discuss with UCLA on Oct 15th and potentially use a surgeon at UCLA to conduct this surgery. I have changed several areas of my life to give my body the best possible chance to survive; I?m now on a Vegan diet with no salt, no caffeine, no alcohol, and also juicing organic fruits and veggies like crazy. I added an RO water system and now I?m looking at home air purifiers. Thanks for your website and hope for a bright future. Take care and God Bless.
Tony
Reply Sara Garcia Gomez
12:04 PM on June 17, 2013 
Thanks, maria.
Yes, after therapy my mom had a PET and, just two days ago, an exam of the throat (where was the primary tumor). They said that her conditions are good. She will have PET and/or CAT every three months from now.
Sorry for the english,i'm quite in a hurry! All best for all of you! I will write soon