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Hi i'm a new member my name is Stacy and unfortunately my mom has localized amyloidosis in the lungs. I'm trying to find out if anyone out there has the same diagnosis. She has a really bad cough to the point where she can't breath, just wanted to know if anyone has some experience with this symptom..... hoping that maybe there is something to calm the cough, thanks...
Thanks for the info...I was able to contact him right away...very helpful! :)
Hi Nemo,
Dr. Berk's emails address is jberk@bu.edu. Have you had your workup done yet? You can also call him, he is great about returning telephone calls.
1-617-638-4317
I think at one time I read a message on this board from Muriel and she gave someone Dr Berk's email...if you could share that again I would really apprectiate it. THANKS! :)
Thanks...for the excellent info. Unfortuately, most local doctors seem to not have any experience with amyloidosis and there is so much trail & error...I will definately share this info with local doctor too. I should be seeing Dr Berk in about 3 weeks if the scheduling goes right. (it's a long story but they keep trying to schedule me for the 3 full days of workups there like I had last year but I really only need to see 2 doctors Dr Berk & another one) I am sure he will give my local oncologist the right dosage as you mentioned. I am grateful for a doctor like him and hope the appt goes through! I think I might have more questions for you after the visit @ Boston Medical. I will be away for 2 weeks in case you don't get a response from me on this thread.THANKS AGAIN for sharing.
Hi Nemo,
While I'm not Paulette, I too had radiation treatments for my amyloidosis. I had 18 days of radiation in 2006 and it did stop the growth of the amyloid in the radiated area. I was told by Dr. Berk in Boston that they give patients no more than 20 grys of radiation per treatment period and that they try not to give more than 40 grys total. Unfortunately for me, my local radiation oncologist refused to contact Boston for dosing advice, and because of that I received 36 grys of radiation during my treatments. (I had not talked to Boston before having this done locally....BIG mistake). So please be careful if you are treated locally....make sure they don't over radiate you. Please consult with Dr. Berk in Boston. You would receive the proper care there.
Paula
The post from Nemo on July 1 was a question for Paulette 1. Thanks :)
Could you share how long you received radiation..for months? how many times per month? how many months in duration? and does it slow it down or erradicate it?
THANKS :)
I let Paulette know that you are trying to reach her. She has not checked her emails lately due to the trip but she is trying to get to them soon. I don't have a phone number for her but I do have her email address. Were you trying to reach her on here or on her private email address?
Hello my name is Katrina Hunt
I was recently in Boston, MA (with my mother) where I met Paulette Wolff. I am having a problem getting in touch with her via e-mail.
Please let me know how I can reach you. Thanks a bunch. I have been thinking of you & praying for you.
God Bless
katrina
I have amyloidosis in both lungs and I'm treated in Boston. Please have your Dad's doctors contact Dr. John Berk there! I have been given very low dose radiation on my right lung and it's really helped. I have NEVER taken any drugs as part of my treatment.
PLEASE DON'T WAIT to contact them!! Dr. Berk is helpful and wonderful.
Hugs, Paulette Wolff, Denver, CO
My father does live in Phoenix and I have directed him to go see the specialists at Mayo. Styxx, my father is on Prednisone. The physicians started him in the hospital on very high doses and they are now tapering him off. Steriods are pretty nasty as far as what they do to the personality, so we are looking forward to him being totally off in 20 days. Styxx and Gapeach thanks for responding and being so kind.
Hi Phxgal,
i'm very sorry to hear what happened this must be extremely hard for u and ur family, i hope u can stay strong for ur dad he needs all the support he can get. My mom is on steroids too and inhalers. What did they give ur dad? I just want to see if there are there any other meds my mom can get. thanks for responding to my discussion i appreciate it, i hope to hear from u soon, to see how u and ur dad r doing....stay strong.
My father was just dx with Amyloidosis of the lung after 3 weeks in the hospital. He started with coughing up copious amounts of clotted blood. The doctors did not know what was wrong with him until they did an open lung biopsy and sent it to Mayo. We thought we were going to lose him, he spent 5 days intubated in the ICU. The pulmonolgist found a case where they used high doses of steroids in Japan, so they started my father on steroids. After another week, he was dcd two days ago. He is doing well, but we are all painfully aware that he has a non-curable, rare disease. I hope your mom finds some relief from her sx.
Hi everyone, I have been trying to figure out what to do with her health insurance because she doesnt have any right now, i went into both websites for both boston and mayo and i wanted to give them a call but i'm not sure what to do .
Hi Stacy,
Haven't heard from you in a while and just wanted to check in and see how your Mom is doing.
Hope to hear from you again soon.
Hugs, Paulette
Thanks again for all the helpful information... Mommalina im sorry for ur loses, my mom is diagnosed with ILD, Interstitial Lung disease, she is still not on oxygen but i know eventually she will be.
I checked out the websites for mayo cliic and BUMC and they have so many diffrent options and research programs that are available, i will get in contact with them eventually, thanks GaPeach. Both of u have a great time in Jacksonville and let us know whats new.
Thanks everyone. I asked about Idiopathic Pulmonary Fibrosis because my friend and neighbor was diagnosed with IPF several years ago and has to breath oxygen all the time. I know of several people in my area who have died with the disease. My own father died in 1977 of IPF after having to have oxygen for his last 1 1/2 years. Since my brother, Bill, died on Nov.2 of AL, I'm just wondering if there could be any connection. Of course, in my father's case, he smoked, farmed, and inspected grain for the state of Georgia. I just feel a lot of these ailments may be amyloid related. Keep the replies coming. I am attending the seminar in Jacksonville tomorrow.
Hi GaPeach and Paula,
thanks for answering my question so quick, my mom lives in los angeles, california and she was diagnosed may 2008 @ LAC+USC general hospital. The doctors have not mentioned radiation as an option for her problem, they just say there is no cure and have her on prednisone and imuran. thanks for the support and feedback i appreciate it,
stacy
Hi Stacy,
I too have localized Amyloidosis but mine is on my lower lip and on the inside of my mouth. Where does your mother live and where is she treated? I do know of one other woman with lung involvement. She lives in Denver and is treated by Dr. John Berk at the Boston Amyloid Treatment & Research Center. Has your mother had any radiation as of yet? That appears to be the best way to manage lung amyloid. If you go to our website at www.amyloidosissupport.com you can see when and if we have a support group meeting in your area. We also have a yahoo group with over 540 members that you can join by going to www.amyloidosisonline.com. I will send an email to the lady with lung involvement and let her know you need some questions answered. She is a member of this board but I am unsure how often she checks in.
Paula
GA/FL Co Facilitator
Amyloidosis Support Groups
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