Side-effects of Progesterone-Threrapy?

[Christina.Ramos]

Hello all members  ,

My name is Christina, I´m 34 years old and I live in Germany. I`m sorry, but my English is not very good. I hope all of you could unterstand me .
I was diagnosed with LAM in the year 1997, I was 22 years old. My Lungtissue was already at this time complete overgrow with cysts, the both sids of the lungs.

It was the beginning of a very bad time. I must undergo two operations(pleurectomie+ pleurodese) on the rigth side and one on the left side, because a chest tube couldn´t resolve all the problems. I have at this time many Pneumothoraces.
Eight months later, when I feel bether I beginn to work. I´m a nurse. But it was very difficult that I must stop it, because I have tuberous sclerosis too with epilepsy.

From the year 2006 my lungfunction get worse( FEV1 500ml; VC 2100ml). The next problems I had, was many of Chylothorax, Chyloptysis and Chylous ascites!
At this time I beginn the Therapy with Sirolimus (3mg/day) and Medroxyprogesterone i.m. (300mg/month). The Complications I have: Thrombosis and Osteoporosis.

Here in Germany is the disease LAM by the most of the Medicals unknown. During my therapie 2006 they make many mistakes. I lost very much weight and I have muscelatrophy. I have Oxygen 5lpm sinse 2006.

Now I´m afraid about the side-effects of the Therapy with Progesterone(since three years!).
I heard about a case of a women with LAM treated with Progesterone; subsequently, rapid growth of multiple intercranial meningiomas was observed.
I try to speak about this Case with my medicals, but nobody heard about this problem. For me it is a big disappointment. The most of the medicals are lack of interest!

In the month of may, I had the opportunity to speak with Dr. David Neal Franz. He told me about a therapie with Aromatase-Inhibitor. I heard about it the first time.
Perhaps somebody of you could tell me more about a Case with this therapie?

Many greetings from Germany,
Christina Wörpel- Ramos

[harbauma]

The aromatase inhibitors have been tested in clinical trials for treatment of women with breast cancer.  In particular it was being compared to the use of tamoxifin.  There appears to have been success in preventing metastisis.  I don't remember if it has been approved yet anywhere for the treatment of cancer.

Since LAM cells have some of the characteristics of cancer cells (although LAM is not cancer), the LAM researchers are interested in setting up a clinical trial of the use of aromatase inhibitors in the treatment of LAM.  I am not aware of any cases of LAM being treated with this.  You might try to contact Frank McCormack at the University of Cincinnati for more information (frank.mccormack@us.edu) and/or Leslie Korbee (leslie.korbee@cchmc.org) who is currently the MILES Trial Project Manager and has information about the aromatase inhibitors and a possible clinical trial in the future.

While progesterone used to be considered as a potential treatment, it is not usually recommended these days because its effectiveness is uncertain and the because of concern about the side effects such as some you may have experienced.  It may have some benefits in a small number of those with LAM but who those might be is not known.

There is an organization in Germany that might be helpful to make contact with.  They might be able to put you in contact with more knowledgeable medical providers.

LAM Selbsthilfe Deutschland
Susanne Geiling, LAMbassador
Hubert Wirtz, MD, Medical Advisor

Contact Sally Lamb at The LAM Foundation for contact information.  slamb@thelamfoundation.org

I wish you the very best and hope you can find some answers and better support.

Mary Harbaugh
Shoreview, MN

[Christina.Ramos]

Hello Mary,

please forgive me that I am reacting to your fast response only now.
I would like to thank you for it quite cordially.

Many greetings,
Christina.