"Carla, we have established a memorial forum on the site: http://amyloidosissupportnetwork.org/page/amyloidosis-memorial
If you wish to leave a remembrance of your mother, you are most welcome to. Best wishes!"
carla's Page
Latest Activity
Moderatordancermom left a comment for carla
"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…"
carla replied to LindaH's discussion How to prepare and what to expect with chemo?"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…"
ModeratorScott Orn commented on carla's status
"Thanks for sharing Carla, I hope you got some good feedback. :)"
mike commented on carla's status"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…"
carla replied to LindaH's discussion How to prepare and what to expect with chemo?"My Mom started this yesterday. Lets pray for each of them. Please keep me posted and I will too"
carla posted a status"Mom started Chemo yesterday Velcade, Cytoxan and Dexamethasone. Anyone know about this?"
ModeratorScott Orn left a comment for carla
"Wonderful to have you here Carla! this is a terrific group of people. I hope you like it here!"
ModeratorLouisa Marion's Daugher left a comment for carla
"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…"
John "JC" Colyer left a comment for carla""Welcome carla , I know you will connect with good people here that will offer you support and information, Stay Strong"
Profile Information
- 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!)
- 2. Facebook
- 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)
- At 6:47am on April 25, 2013,
Moderatordancermom said… Carla, we have established a memorial forum on the site: http://amyloidosissupportnetwork.org/page/amyloidosis-memorial
If you wish to leave a remembrance of your mother, you are most welcome to. Best wishes!
- At 8:38pm on April 2, 2013,
Moderatordancermom said… 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!
- At 8:17pm on August 21, 2012, John "JC" Colyer gave carla a gift…
- At 1:14pm on July 29, 2012,
ModeratorScott Orn said… Wonderful to have you here Carla! this is a terrific group of people. I hope you like it here!
- At 4:26am on July 28, 2012,
ModeratorLouisa Marion's Daugher said… 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!
- At 5:24pm on July 27, 2012, John "JC" Colyer said…
"Welcome carla , I know you will connect with good people here that will offer you support and information, Stay Strong
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