Langerhans Cell Sarcoma

Langerhans Cell Sarcoma

Daniel's Story

"you have a very rare sarcoma"

 

an email I sent to a friend that explains the first few weeks... It is a bit muddled and all over the place but I was very confused at the time.

Maria Monteverde( Daniel's mum)

Dear..............

On the 21st December, 2009 on Daniel's 18th birthday he was diagnosed with a Sarcoma. It is in his hip and the size of a very large orange. It has been named Langerhans Cell Sarcoma but more tests are still being done to determine what else it could be. It is a very rare cancer and that is what scares me. Daniel is the FIRST case known of in Australia.

 

We are still trying to come to terms with this as it was diagnosed by accident- we took him for an MRI scan to see if he had an muscle torn or an infection  as he had a sore hip for 2 weeks and then started to have night sweats and fevers . Blood tests that I ordered showed extremely HIGH levels of CRP ( C Reactive Protein) an indicator of severe inflammation or acute infection or tissue injury.He also had a very high erythrocyte sedimentation rate (ESR), another indicator of inflammation. 

The MRI was conclusive- it was then that we were told to go straight to RPA Hospital, where the Sarcoma team was waiting. That day is a distant blur. Much of it I cannot remember. So much information to absorb. Shock and disbelief , comes to mind but numbness also took over and we were unable to think straight or to function. Daniel was quiet all the way home. So were we actually. There was nothing that I could get out of my mouth that could make it better for him. What do you say to your son, after he has just been told he has cancer. We  made a rule not to cry , not to show our fear .

The next day we were more composed and we started to talk to him, discuss the events of the previous day and try to reassure him that all would be fine. This could not be happening to him. 

A biopsy was scheduled for 21st December, his 18th birthday. That was the day they confirmed it was a malignant Sarcoma. Every young adult celebrates their 18th with fun and laughter, but my son had the worst news any one can get . A small gathering was arranged and he had 20 or so of his closest friends visit him that night to celebrate his 18th. They were strangely quiet, some were crying when he wasn’t looking , some were just in shock...but they smiled and laughed for him and made his birthday as good as it could be.I watched him struggle to smile. He was in pain from the procedure but as always determined to not let this get to him. He was happy to have his friends there for him and that was all that mattered on the night. 

The PET scan in the 22nd December showed no other cancer in his body ( no metasizes) so it seems to just be in the one place for now but it is quite large. This was fantastic news as it means that its a lower grade and possibility of a cure or remission is greater. Once the cells move into the lungs, other organs or lymphatic system, it is harder to eradicate.

Daniel had his first chemo on the 24th December and will have to be treated every 2 weeks with “CHOP” chemotherapy regimen.

 

Its now 8 days since chemo and after a few rough days he is looking healthier and has color back in his cheeks and a little more energy. Vince and are having good and bad days and are trying to keep happy faces for Daniel as we want him to stay positive.

He has been feeling well enough to go out with friends the last few 

days and is walking better now but has weak muscles in his upper leg and thigh so cannot even lift the leg without help. He uses crutches to get about.

  

His friends and their families have been wonderful and some are even shaving their heads to support him.Our families are of course being strong and supportive. I have not as yet told all of my friends but will do so as I have the energy. 

 

I have been trying to research the cancer online but until more 

results come back from the USA we are still not exactly sure what the diagnosis is. Once I know I will make sure he is getting the right treatments and travel overseas if they cannot help him here. I have though been reassured that we have the best care he can get. He has a team of cancer specialists including an oncologist, and an orthopedic surgeon. 

This is a rare cancer. Treatments are experimental. We are ready for whatever it throws our way . We will fight for our son and do whatever we can to help the doctors find answers. 

speak soon, Maria

A Summary of what has happened since then...

Daniel’s diagnosis took forever until finally an expert from Pittsburgh , USA gave us the FINAL diagnosis. At one stage the tumor was thought to be benign but his analysis proved that wrong. 

In total Daniel had 5 rounds of chemotherapy ( CHOP regimen) and his final was Easter 2010. 

We also took Daniel to see Dr Chen , a chinese herbalist who was once an oncologist and specializes in cancer. Daniel takes herbs, is given acupuncture and a special diet. 

The tumor was most completely gone by June 2010. Bone regeneration is visible and he was then monitored with regular MRI and PET scans. 

As of July 2013 the scans are still clear. The PET scans show normal activity where there was once high SUV readings. 

Since the tumor was suspected to be of a lower grade and had resolved, surgery to remove the tumor was re considered , something we were happy about since it was going to be drastic and debilitating as his ilium and hip joint were to be removed, radiated and replaced. Surgery is always one of the best choices for Sarcomas but we agreed that it was best for Daniel to wait and see.

I look at my son now and he is healthy and thriving. His body is fighting and we live with HOPE. 

Please feel free to CONTACT me if you have any information about this rare cancer that you would like to share or if you would like any information that I have found.  

 

Update: February 2011

Good News. Daniel's latest MRI scan is clear- "There is No evidence to suggest tumor recurrence". A PET scan has been organized for end of March. It will look for any metastasis in other parts of the body as the MRI only focused on the primary site in the pelvis.

Update : March 2012

We continue to have good Clear scans. The latest MRI and PET scans were both clear. Its now been 27 months since diagnosis. 

Update : July 2013  All clear still- 3 1/2 years since diagnosis

all clear !

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