LAM Fact Sheet

Treatment to try and stop LAM progressing

Various treatments have been tried for LAM, particularly hormone treatments. Because LAM is rare it has not been possible to study different treatments in the way that they would normally be studied in other diseases i.e by comparing treatment with a dummy treatment (placebo) in a controlled trial. The treatments outlined below appear to have been helpful to some patients although it isn't clear whether they suit all patients and they can have some side effects. The following treatments have been tried:

  1. Progesterone. This is the most commonnest treatment used in the United Kingdom. It is usually given by an injection every 3 or 4 weeks. It may help some patients but even this is not certain.There is also a tablet form but whether this is effective is uncertain. There are often no side effects from progesterone but nausea, a bloated feeling, headache and swollen ankles can occur.
  2. Removing the ovaries (oopherectomy). Removing the ovaries reduces the levels of the female hormone oestrogen. It has been tried more in the United States than in the United Kingdom. How helpful it is is uncertain
  3. Tamoxifen. Tamoxifen blocks the effects of oestrogen and is sometimes used by patients with breast cancer. Experience with this is even more limited.
  4. Hormones to reduce the release of oestrogen. These drugs are usually given by injection or by nasal spray and experience is, again, limited.

New experimental approaches to treating LAM are being considered and one drug (rapamycin) is already undergoing clinical trials. New treatments have to be assessed carefully as the drugs are not without risk. Other possible treatments are under investigation but not ready for clinical trials yet. The LAMPost and website will keep you up to date on developments.

Next - Treatment for Kidney Tumours