Nicks story as told by his daughter, Susan...who contacted me through this website- these are her emails to me....
I just came across your website. My father was diagnosed with Langerhans Cell Sarcoma last year. He’s 55 (54 at the time), and underwent extensive chemo treatments, which got rid of his tumor. 6 months later, he’s just received word that the tumor is back and is now going to undergo aggressive chemo treatments (staying in the hospital for a week at a time per round of chemo), and also has to have a bone marrow transplant. He’ll be treated at Stanford Hospital (we’re from San Francisco), so I know he’ll have the best of the best looking after him, but nevertheless a very scary time since there is little to nil information about this condition. My dad is a private person, so I have to rely on my stepmother for the facts. All a very tough pill to swallow.
They (Doctors) believe that his Langerhans came about because of overexposure to chemicals. My dad worked with asbestos when he was a teenager, while working at his dad’s gas station (so, more chemicals!), and is also a heating/air conditioning contractor). So I’m sure the list of toxins he has been exposed to goes on…
Anyway, just wanted to introduce myself. I’m glad your son is doing well! It’s great to hear success stories on such a rare condition.
Chemo was working, but the cancer came back. The DR had him on intensive chemo, which worked to shrink the tumor, but they stopped for fear his liver would give out. Now he’s on leukemia medication. We’re just buying time so we can find a bone marrow donor. So far, no match. We’ve been holding various bone marrow drives within our community (we’re Russian), all over the country, and we’ll keep trying until we find one. I haven’t really asked the question about how much time we have until we really need to worry, or what happens if we don’t find a donor… trying to do what we can to get the word out and get people to join the National Bone Marrow Registry!
The tumor started in the groin area and he did have a lymph node removed. With chemo, the rest of the cancer went away. When he went back for his 6 month follow up exam, the doctors advised that the cancer was back “aggressively”, which is why they want to do the bone marrow transplant. So with intensive chemo (not sure about the use of any radiation), they did see results. But he can only be on the chemo so long. Right now the hope is that they find a match, and when he does, he’ll have the bone marrow transplant, plus an extra dose of heavy chemo to kill off what’s left. Problem is that the cancer has now spread to another lymph node, so trying to stay hopeful that we find a donor soon. From what I know, it has not spread from the primary site.
Sadly, my dad passed away on September 9th, 2012. He received a bone marrow transplant last April and although it took very well, it did not help the cancer at all so it only spread. He attempted one more very aggressive chemo treatment in May or June that landed him in intensive care for almost a month due to kidney failure. His chances of surviving the kidney failure were slim, but he bounced back from that (in fact, the dr’s said he would need dialysis for the rest of his life, but his kidneys were over 95% functional by the time he passed away and never needed dialysis outside the hospital). But once the kidneys failed, there wasn’t much more they could do. He went home in July to hospice care, where he looked and felt great (didn’t need a walker or anything!) for over a month. Then, inevitably, the sudden decline. I saw him the day before he passed and he seemed to be able to recognize me. He was tired and weak but kept trying to get out of bed and had eaten bites of food that morning. Even though I knew what was happening, I was still a little in denial at this point because I had never seen anyone so close to death fighting so hard. He passed away in his sleep and went very peacefully. Never will I know someone who was so physically and mentally strong. He fought right up until the end. Sorry for the lengthy and detailed email. Sometimes it feels good to share.
I appreciate all the support you showed me and my family and am so very, very happy that this disease was indeed able to be stopped with your son and others. Hopefully we’ll find the key to this terrible disease so others can be saved. I know through our bone marrow drives alone, we have helped 6 people find their bone marrow match, so 6 people and 6 chances at life. And that’s something to feel good about