Good news for us with yet another year passing with no reoccurrence. Its now been 7 years since diagnosis and so much seems to be happening in the world of oncology and Cancer treatment. I have heard Immunotherapy is being used more and more and I really believe there is much to be excited about in the years to come with treatments that will target specific cancers in your body based on your specific makeup.

I am sure everyone on the site will be happy to know that young Deryn is doing extremely well...they are calling it a miracle recovery. This young man needs some serious fun now! 4 years of fighting and he has come out the other side...there is hope and this proves that never giving up, asking the right questions, dedicated parents and so many other factors can and do, help you get through this. 

We wish you all the best Deryn!

http://www.bristolpost.co.uk/Miracle-recoveryDeryn-14-fight-rare-cancer/story-20647890-detail/story.html

Its been a while since I have had contact with Deryn's mum , Callie. So how happy was I to hear that is is doing so much better . Its been a tough few years for them all. 

There is always HOPE and no matter what the medical teams predict...no one ever knows what your body is capable of and where this very rare sarcoma called Langerhans Cell Sarcoma will take you.

all our best Deryn, hang in there 

http://www.bristolpost.co.uk/Miracle-recoveryDeryn-14-fight-rare-cancer/story-20647890-detail/story.html

Seems that the neck area is most frequent place for primary site of LCS. It also likes to locate itself in  Lymph nodes in the neck area. This is just what I am seeing from the few new cases since starting the site.

There are of course many other locations. 7 yr old Sydney- spine. A gentleman from USA- groin. Daniel- pelvis. Another case- Neck- tonsils and Lungs.

I have just been contacted by a gentleman whose son, 14 has been diagnosed- neck lymh node area. 

CHOP chemo seems to be the main choice , some are also using radiation and  surgury to remove the tumour if possible. 

It would be wonderful for all if you could take a minute to share your tumour locations and treatment protocol with the others on this site and keep us updated if you can with how you are going. This is so rare thats its crucial to share what we can.

Wishing you all well and hoping that you are all doing fine.

Daniel's scans are still showing up clear! The same goes for Russell ( Tenessee) - who just had a clear PET scan! 

Maria

Since starting this website I have become aware of 9 more cases of Langerhans Cell sarcoma through people contacting me or posting on this site. Yes, this is very rare. That doesn't mean its not curable. Actually, most doctors are intriged by its rarity and are willing to search that little further for answers. This is where our combined information can help. Good luck everyone- Lets kick this Cancer in the arse! 

We are so happy. Daniels latest PET and CT scans last week were clear.:)

Russell from Tennesse also has had CLEAR scans just recently:)

In the past few months I have learnt of young Dylan from the UK who has just been diagnosed and a lady in Italy also. 

follow Dylan's story here  http://www.langerhanscellsarcoma.co.uk/

Daniel's latest scans in December were clear.  Next we have a PET scan in 3 months. He looks well and feels wonderful. 

Daniel's latest MRI results from June 2011 shows " No local tumor reoccurrence" .  18 months since diagnosis now.

Its now been one year since chemotherapy ceased for Daniel . His last was Easter Thursday 2010. 12 months of no reoccurrence. To someone with cancer it means everything to know that every day that goes by with clear results is a step closer to remission and winning the battle of their lives.