Thank you for accepting me to the gruop, I have AL in the lungs is there any one out there who has this and would they like to share
Hello Tallguy and welcome to the group. While I don’t have lung involvement, I do have localized Amyloidosis that was treated with radiation therapy. Since lung amyloid is sometimes treated with radiation, we may have that in common. Has that ever been discussed in your case? I do know several patients with lung involvement but they are not members of this group. Three have had radiation and two others are taking a wait and watch approach right now. If you contact Pat Neely at ■■■■■■■■■■■■■■■■■■■■■■ she can direct you to the specialists and hospitals in your area that are familiar with Amyloidosis. Just tell her Paula from the Amyloidosis Support Groups sent you to her. We met a few years ago in the Netherlands while attending the International Society of Amyloidosis bi-annual meeting. She is a sweet lady and knows her stuff! If you have any questions, I would be happy to try and answer them for you.
Hi Tallguy welcome to the group, i've tried to send you a message on the group discussion board but it told me we had to be friends first ! so i have sent you a friend request hopefully you'll get the message as well if not let me know and i will try again. I have Localised AL amyloidosis in trachea main bronchial tree and lungs.