"Carla, I am new to the group. I am very sorry to hear about your mother. I lost my dad to pancreatic cancer, and I understand exactly where you are coming from in your opinion about the chemo; it definitely shortened my dad's last…"
"My Mother lost her fight November 1. Her amyloidosis was exacerbated by the chemo. My Mother told me before starting that chem had never ever cured anyone in her family and had always killed. It did my Mom. I pray…"
"ty..well for me it's been a real roler coaster ride...good things bad things every week..imagine thats the norm for most chemo patients.I am hoping after about 2 months now of this to see numbers indicating what direction I m going for now..do…"
"Welcome Carla! Glad you found this Group! My Mom also was a nurse and found out she had amyloidosis a few months after her diagnosis. That was 20 years ago, when they didn't have any treatment at all to help her. I pray…"
Are you a patient, relative, friend, caretaker or medical professional?
Relative, Caretaker, Medical Professional
When were you (or the patient) diagnosed?
June 10, 2011
What medications and/or treatment have you tried?
Mom tried chemo one round alkaran and just about killed her. The last 6 months have been very hard. We were diagnosed at Mayo Clinic in Rochester. She has been doing albumin and anitbiotic infusions in addition to daily prednisone 20mg.
How has Amyloidosis affected your quality of life? Your ability to work?
Mom's quality has been compromised, she is a retired nurse, but she always says it could always be worse.
Please share your story with the community..(even a few words helps us know you are not a spammer. :))
All I can say is that if I were not a Christian I could not get through all this with Mom.
How did you hear about us? (This information tells us how to best find new patients to help!)
Why did you decide to join (multiple answers okay)?
Friendship: I wanted to connect with others, Cure: I want to help find a cure, Support: I need emotional support, Support: I want to help support others dealing with this, Information: I want to learn more about symptoms/treatment, Information: I want to share what I've learned about symptoms/treatment
Do you want to to OPT-IN of the Ben's Friends monthly newsletter (http://bensfriends.org/welcome/newsletters)?
Yes - please send me the monthly Ben's Friends Patient Communities newsletter.
What are you passionate about?
A cure and a way to better diagnose before it is too late. I am a nurse with a very scientific mind. I have worked in healthcare 22 years and this is the worst disease I have ever seen!
Comment Wall (7 comments)
You need to be a member of Amyloidosis Support Network - Online Support Group to add comments!
Carla, I am new to the group. I am very sorry to hear about your mother. I lost my dad to pancreatic cancer, and I understand exactly where you are coming from in your opinion about the chemo; it definitely shortened my dad's last days, and made them more difficult, too.
I believe the next decade will see some promising new treatments for amyloidosis. I have posted about a new trial in the discussion section. Best wishes for your peace and healing!
Welcome Carla! Glad you found this Group! My Mom also was a nurse and found out she had amyloidosis a few months after her diagnosis. That was 20 years ago, when they didn't have any treatment at all to help her. I pray that the treatment your Mom is on helps her. I totally agree with you....Amyloidosis is a horrible disease! At that time, there wasn't a support group when my Mom was sick! Please know that I'll always be here to support you, Carla!