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Maria Monteverde

8:05 PM on April 25, 2019

Hi all. Been a while. Daniel still doing fine and enjoying life. Eric, the other case here in Australia also doing well. Hope everyone enjoyed their easter and have been well. Maria

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...

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.

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!

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.

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...

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...

Pat Roussel

1:18 PM on November 9, 2013

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

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

Maria Monteverde

6:48 AM on June 6, 2013

Ahmad,

Welcome to our site. I will email you the details you were after. All the best for your son.

Ahmad says...

Hi Maria,

you re doing a great job, as you know we are also fighting this LCS, and I am sure hope will take us out of this one day...

Ahmad

Maria Monteverde

6:47 AM on June 6, 2013

Hi Sara,

I am sorry . I thought I had replied to your post. I am so glad that your mum is doing well on CHOP. Daniel is doing very well . Over 3 years in remission now. He has more scans next week, MRI .

Please keep in contact and feel free to ask questions. We are not doctors but we have one thing in common, LCS. The members on the site have mostly all been through treatment and can help answer any questions you may have. As you know , this is very rare and any information is useful. I wish your mum a good recovery from the chemotherapy. Are they doing more scans soon to see the results of the chemo?

Maria

Sara Garcia Gomez says...

Hello everyone, sorry for the long time i didn't visit this site.

How are you? Maria, i just want to inform you about my mum. After many exams, they found some tumoral sites in her tonsil and her lung, so they decided to cure her with CHOP and no surgery. She ended her therapy just few weeks ago, and it seems that it worked, doctors are glad. It was a very bad phase for her, but now we're all hoping for a long long new phase of health.

How is Daniel? And you members of the site? Thanks maria for your support!

anonymous

6:28 AM on June 6, 2013

Good to hear about your Mom, CHOP seem to be working...

anonymous

6:28 AM on June 6, 2013

Sara Garcia Gomez says...

Hello everyone, sorry for the long time i didn't visit this site.

How is Daniel? And you members of the site? Thanks maria for your support!

Ahmad

6:27 AM on June 6, 2013

Hi Maria,

you re doing a great job, as you know we are also fighting this LCS, and I am sure hope will take us out of this one day...

Ahmad

Sara Garcia Gomez

3:40 PM on May 16, 2013

Hello everyone, sorry for the long time i didn't visit this site.

How is Daniel? And you members of the site? Thanks maria for your support!

Maria Monteverde

4:24 AM on December 16, 2012

Hi Barry.

I have been in contact with Callie and a link to Deryn's story ( their blog) is on this site. I have been keeping an eye on him from afar through their blog and hope that he is soon back home and away from hospitals. You are a very good friend to go the extra mile and try to find information for them. There is so little to be found though as its so very rare. Only a few cases worldwide. Not many people affected, so no foundations, no research or very little. This is why I started this site so that we could all share what we find. take care and have a very happy Christmas. My son will celebrate 3 years of remission and his 21st birthday on the 21st of this month. I wish the same for Deryn. He is only 13 and has a whole life ahead of him !

Barry Turner says...

Inspired to find out more as deryn Blackwell,my friends boy has this rare condition in the UK and as I network well and like to find out about a subject ended up here.

They are doing a lot to make people aware and a nod of sipport is always welcome.

Hope all is well in Aus and thanks for the info and links.

Barry Turner

2:49 AM on December 16, 2012

Inspired to find out more as deryn Blackwell,my friends boy has this rare condition in the UK and as I network well and like to find out about a subject ended up here.

They are doing a lot to make people aware and a nod of sipport is always welcome.

Hope all is well in Aus and thanks for the info and links.

Barry Turner

2:49 AM on December 16, 2012

Maria Monteverde

4:58 AM on October 20, 2012

Hello Sara. Wishing you all the best for your mum. This Cancer is very rare but very treatable. Let us know how she is going please. Maria

Sara Garcia Gomez says...

Hello everyone, I'm from Padova, Italy. Just this week my mum, Antonia, has been diagnosed with Langerhans cell sarcoma... Her neck's lymphonodes have grown since this summer, and after many exams, we are waiting for the surgery and then radiotherapy. But first she has to get an other TC.. Seems that we're waiting from long long time! I hope to give you good news in the future.

Good luck for Daniel and other fighting people.

Sara

Maria Monteverde

4:54 AM on October 20, 2012

Hi Graham,

I hope you are well. You asked me if anyone else in the UK has this Cancer a while ago. A young boy has been recently diagnosed. His mum contacted me. They also know of someone who has it I think. Dylan's mum is called Callie. You can follow their story here on their blog. http://www.langerhanscellsarcoma.co.uk/. Hope this helps.

Graham Sawyer says...

Hi Maria

Thanks for your offer. I am not sure what I want to read about this just yet as I am still coming to terms with the diagnosis. Of course, anything I learn I will share with you. May I ask, do you or anyone else on here, know if anybody in the UK has this cancer?

Sara Garcia Gomez

12:38 PM on October 19, 2012

Good luck for Daniel and other fighting people.

Sara

Maria Monteverde

9:14 AM on July 1, 2012

Hello Graham, How are you? Its been over 12 months since we spoke . I hope everything is going well with your treatment. Maria

Graham Sawyer says...

Hi Maria

Maria Monteverde

9:11 AM on July 1, 2012

Ciao Sandro. Come stai? Daniel sta facendo molto bene ed � ancora priva di qualsiasi tumore. Maria

Sandro Carrara says...

Hi, I'm Sandro. I'm born in Italy in 1962 . I was diagnosed with Langherhans Cell Sarcoma in 2007, Is localized in my neck(parotid gland). I was operated so teatred with Radiotherapy(30 teatments).

Today at the last controll in TC everything is "normal".

Good luck for Daniel and i'm available for any explanation. SORRY FOR MY INCORRECT ENGLISH .

Maria Monteverde

9:08 AM on July 1, 2012

Ollie, How is you Dad doing?

Ollie Askill says...

My dad, Stephen Askill has just been diagnosed with langerhans cell sarcoma, to have surgery soon. Please get in touch

Maria Monteverde

5:07 PM on February 28, 2012

Ollie, Sorry to hear about your Dad. I started this website to find cases overseas as we live in Australia and my son Daniel is the only case in this country.

I just thought that if we can help the doctors by sharing treatment plans, comparing scans and pathology reports then it will ultimately help us with this very rare cancer.

Every case is different and the location and size of the tumor varies so much. Where is your Dad's tumor. Has he had any treatments before surgery? Did he have Chemotherapy? Radiation? How was it diagnosed? Pathology here in Australia gave us the diagnosis practically immediately but then they wanted a second opinion as they were not sure if it could have actually been benign.

Stay positive. Maria

Ollie Askill

1:58 PM on February 28, 2012

My dad, Stephen Askill has just been diagnosed with langerhans cell sarcoma, to have surgery soon. Please get in touch

Maria Monteverde

10:56 PM on December 3, 2011

Hello Everyone. Just wanting to wish you all a wonderful Christmas with your families and most of all a HEALTHY 2012! May you all continue to have good results ....we have HOPE and we have through our new friendships, support. I value your friendships and I am glad I now have people who can relate to what we are going through. Take care and lets kick Cancer's arse!

Sandro Carrara

8:48 AM on November 28, 2011

Hi, I'm Sandro. I'm born in Italy in 1962 . I was diagnosed with Langherhans Cell Sarcoma in 2007, Is localized in my neck(parotid gland). I was operated so teatred with Radiotherapy(30 teatments).

Today at the last controll in TC everything is "normal".

Good luck for Daniel and i'm available for any explanation. SORRY FOR MY INCORRECT ENGLISH .

Kim Wilson

10:34 PM on September 24, 2011

What a gorgeous family you have. Kahlia, Britany and I have just viewed your photos. Oh how we can relate. Maria you are an amazing Mum and your website is really impressive.

You are a lady after my own heart. Nothing is too much, too hard, too far away for our babies.

Danielle is looking so well!! And handsome!!

Love to you all from fellow a sarcoma warrior family.

Maria Monteverde

4:21 AM on September 9, 2011

another PET scan in 7 days. Wish us luck.

Maria Monteverde

3:36 AM on July 15, 2011

Didn't realize it was 9 months! Thats wonderful. They say that the more time goes by without a reoccurrence, less likely you are to have one....so with each day there is increased hope! Theoretically by the time they reach that " 5 year" stage , their chances are very low that this will ever come back.

Judy

2:19 AM on July 15, 2011

Russell is now 9 months out of treatment and we are counting each day!! WooHoo!!

Judy

9:17 AM on May 30, 2011

Hi Graham, my husband has Langerhans Cell Sarcoma. We are in the US. He is just 7 months out of treatment and doing fine. He had surgery, then 6 treatments of CHOP chemo, and then 18 radiation treatments. He got LCS at 58. So it can strike people of all ages. There are very few cases in America. We did register with the Sarcoma Foundation of America. In hopes that they find out new medical information before we do. This is the website. http://www.curesarcoma.org

Prayers are with you!

Judy

9:12 AM on May 30, 2011

Graham Sawyer says...

Hi Maria

Maria Monteverde

5:14 AM on April 27, 2011

Hi Graham,

I understand what you must be going through. Cancer is frightening and even more so when they tell you how rare your condition is. I don't know of any cases in the UK. I did email many hospitals in the UK looking for cases but that was about 14 months ago now. I emailed some of the leading sarcoma Hospitals and sarcoma Foundations in the UK. I will email you later with their details if you like.

This sarcoma is rare but very treatable. If you have been treated for Lymphoma, you probably were given CHOP chemo, which is what they used to treat Daniel's sarcoma.

Take Care, Maria

Graham Sawyer

4:05 AM on April 27, 2011

Hi Maria

Maria Monteverde

9:50 AM on April 26, 2011

Hi Graham,

Thanks for contacting us through our website. I hope you are going well with treatment and that being able to compare treatments will help. If you like I can send you Daniel's reports and pathology results. It may help your team and in return if you could send yours and some information about yourself and your journey so far it would help our team of doctors. Where are you being treated in the UK ? This is a very rare condition and very different in every person but hopefully we can share some information which will help. You can email me via the contact page. Take care. Maria

Graham

8:56 AM on April 26, 2011

Hello all

I am not too sure what to say here yet as up until today, the doctors thought they were dealing with Lymphoma but today I learned that it is in fact Langerhans cell sarcoma. I am in the UK

maria Monteverde

6:32 AM on April 10, 2011

Hi Judy. Thank you for contacting me. I hope your husband is doing well. This is such a rare subtype of Sarcoma and it seems to manifest itself in people of all ages and appears in many different areas of the body. I have managed to find some cases online, have you? If so let me know as any information helps. As with you we waited 8 weeks for a final diagnosis that came from an expert in Pittsburg USA. It is hard to cope at the best of times , but harder knowing that there are no records, no known treatments that actually work. as you have probably read on this website, daniel is doing well and his last PET scan a few weeks ago was completely clear. We , like you, can only hope that it does not return. I would like to know more about his case. I am happy to share Daniel's reports with your doctors and vica versa. Would you kindly ask them if they are interested in seeing his pathology reports and his scans etc. PS you are the first person to contact me since I created the website. This is definately a rare condition, but hopefully a curable one! Regards, Maria

Judy Morgan

2:10 AM on April 10, 2011

My husband has Langerhans Cell Sarcoma. He was diagnosed last April. After 11 needle biopsies (which no one could find out what it was) in the lump in his neck he had surgery to remove the mass on March 31, 2010. Finally 10 days later we were told it was Langerhans Cell Sarcoma. He had 6 treatments of Chop and then 18 radiation treatments. I found this by accident and I am thrilled there is a support group!!

Joe Ierano

3:18 AM on March 15, 2011

I am thrilled at the creation of this site. Knowledge is not only power but can be part of compassion. Maria is living testimony that you can 'get things done' and Daniel proof of the 'doing'... be well.

Cheryl Bolling

8:49 PM on February 2, 2011

Sharing Daniel's journey will give others comfort and support. Daniel and your family will remain in my thoughts and prayers.