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KS- I've tried everything; is anything left?
May 18, 2003
Hello Dr. Bruce,
I have been on the full service, extended program for HIV and K.S. and wonder if there is any other way to adress K.S. Anything to eleviate the burning pain.
My history:
- HIV from 1986 / K.S from 1991
- Currently CD4 360, VL 1320
- soon atazanavir, + ?? depending on results from resistence test. (which meds. suppress K.S. best??)
- have been on/had
- Cidofovir 3 times(early 90)
- ABV chemo 6 times (late 90)
- Caelex (Doxil) 16 times (from late 90 to early 00)
- radiation therapy (my foot is meanwhile well done)
- Taxol once (the second time round an anaphylactic shock cut off this option)
- angiogenesis trial
- lymphatic compression
- I look like Ms. Doubtfire with my supportive stocking
- So far all of this took place in my right leg and foot. The left side is however catching up.
- Doctors from three leading hospitals are looking after me. They just do not see many patients with K.S. anymore.
Is there anything you can suggest. Anything you have learned from your practice. Even less orthodox remedies like floating on the death sea.
Is etoposide a serious option? If it were not for the K.S, my life would be quite all right.
Many thanks,
Amsterdam
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Response from Dr. Dezube
It does indeed seem like you have tried everything. Although I don't have definitive answers for you, here are some thoughts
1) Can you try Cealyx (known as Doxil in the States) again. You might get some benefit from it given that you haven't hadit since 2000?
2) I do wonder if you have active KS. Is there any chance
that you leg swelling is due to left over radiation swelling? Radiation, in itself, can lead to leg swelling.
3) I am not aware of any clinical data that suggests that one group of HIV drugs is better than another group when it comes to KS. That said, there are two basic science papers which indicate that protease inhibitors can inhibit KS independent of their effect on the immune system. These were
basic science papers. Whether they apply to patients is unclear.
4) Etoposide is indeed an option. Different patients response to different drugs. I might try to Doxil first, but if that doesn't work, etoposide is worth a shot.
5) There are some clinical data on Navelbine, which is reasonably well tolerated.
Good luck.
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