The treatment that we, so far, have been through, Trying to cure Lymphangiomatosis

1. Daily injection of the product IntronA, produced by Schering-Plough. Another name for this is Interpheron Alfa 2B. Even though we stopped the treatment, because we did'nt get any results from using this drug, we still think it's worth a try.
2. Monthly injection of the product Aredia, produced by Novartis Oncology. Another name for this is Pamidronate or Bisphosphornate.
3. Pills on a daily basis, Calcium pills called UniKalk, produced by Pharma Vinci A/S

We are at this moment, waiting for some replies from doctors around the world, because many of them want us to start radiotherapy, but here in Denmark the doctors seldom treat children whit this, because one of the many side effects is growth retardation.

Here is what, one of the doctors wrote to us in a e-mail:

"Treat the humeus by radiotherapy using the dose 18 Gy in 12 fractions over 2.5 weeks Try systemic chemotherapy i.e. cyclophoshpamid or a combination of vinblastin and methotrexate for the lung If no response after three courses I will suggest thoracic irradiation accepting early and late toxicity."

We will make this site more informative, as soon as we know some more, right know we are looking at a product called "Zometa" It is as effective as Aredia but with considerably fewer side effect and much short infusion time. Also it seems to be more effective in any bone resrorption disorders. The interesting thing about it (yet to be confirmed) that an infusion every 3rd or even a 6th month may be sufficient !

As far as we have read there are not any similarities between patients. There are slightly more males affected and that made us think of what else is "special" about Marcus. It might be a "dead end" but it would be interesting if other patients could recognize what we have come up with:

• Race

Marcus is Euroasian, with ¼ Chinese. Is it perhaps more common in "mixed" children?

• Birth

The birth of Marcus was very fast and though he was never at risk, his mother lost a lot of blood and it took quite a while for the placenta to come out. Is there a connection?

• Health in general

Unlike the rest of the family Marcus almost never has a cold or the flu. Besides his problems with Gorham´s he really has an exceptionally good health. Is this a positive side effect of having a raging lymphsystem – bugs just don't bite on him?

We would be very happy if other patients took the time to answer these 3 questions and e-mail us. There is probably no connection at all but as parents the question we always ask ourselves is "WHY"? It is also extremely difficult to gather such information when we are dealing with a disorder which is only seen in 3-5 cases in every country and perhaps if similarities are found it could be a way to cure or even avoid the disease in breaking out….