I’ve posted on here once before when I was told I’d be getting sclerotherapy done to treat my AVM. Mine is right in my shoulder and under my clavicle, so unfortunately I can’t try compression therapy on it. About 3 weeks ago, I got my first round of sclerotherapy done. I was not told what medications they would be using to treat it, and when I was told in the recovery room that I might experience hair loss, I found out that Bleomycin is used as a chemotherapeutic. I’m a little worried now, as this is the only treatment I can get done, and I don’t know the long term effects of using a medication like this. Has anyone else had to work through this same process, or have their own experiences with bleomycin?
Hi Aimsie, Welcome back. I hope you find the information and support you’re seeking here.
I have no “extremity” info, my AVM was in my brain.
The only experience we share is the hair loss and I can’t tell if you’re male or female. I’m assuming it matters more to women. Either way, you have my empathy because it feels uncomfortable even though you know it will grow back or you can wear a hat.
I’m hoping that this AVM journey is not too long or painful for you. Best wishes, Greg
Hi @aimsie639 ! It can be hard to keep this in perspective. As you pointed out, this is the only treatment available for your avm. The risk of the minor hair loss is temporary, and from what I found online it’s a fairly low risk.
When I was in my thirties I had some hair loss from methotrexate for my autoimmune condition (also a med used in much higher doses for chemo). It was distressing, no doubt, but it was not actually noticeable to others. My hair did fill out again after some time and proper supplementation.
If you’re struggling with this, and with worry, I would encourage you to keep the lines of communication open here, with your family, and possibly with a professional.
I’ve had and will continue to have Bleomycin treatments. I know looking up the meds online it can sound scary but it hasn’t bothered me at all and seems to be clearing up a lot of the small vessels that would be hard to treat using other methods. Are you getting treated in Boston?
The dosage used for AVM treatments are lower and more local than what is used in cancer treatment, where it’s administered via IV instead of injections. In the past I’ve had foam, coils, glue, and alcohol. Bleomycin is more subtle and less painful afterwards.
Let me know if you have other questions I’d be happy to share more of my experiences.
