Ray Female Covington, KY United States: Like

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PRAYERS & HEALING ENERGY…

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Carla's Mother

Started this discussion. Last reply by StuartUK Dec 1, 2012. 3 Replies 1 Like

Good news! And hope to ALL!!

Started this discussion. Last reply by Pete Oct 20, 2012. 5 Replies 6 Likes

My mother left the hospital today!!She had her stem cell transplant,She had a few set backs, butThe Doctors say that her Amyloids are all in "check". And that they accomplishedWhat they hoped to. She…Continue

Stem Cell Transplant

Started this discussion. Last reply by Ron Mowry Sep 27, 2012. 6 Replies 0 Likes

My mom begins her Stem Cell Transplant tomorrow.

My mom

Started this discussion. Last reply by Tracy loves her dad Oct 18, 2012. 9 Replies 1 Like

My mother is ok but im afraid that maybe she is not. I'm terrified of what's to come, I wish For a way to comfort her. She can not taste anything Or walk right now. and it is so heartbreaking.…Continue

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Red Ribbon From John "JC" Colyer

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Latest Activity

ModeratorScott Orn liked Ray's discussion Good news! And hope to ALL!!

Sunday

ModeratorLouisa Marion's Daugher left a comment for Ray

"Hi Ray, How are you? Keep in Touch...Louisa"

May 9

Moderatordancermom left a comment for Ray

"Hi, Ray, we recently formed a sub-group just for AL amyloidosis: http://amyloidosissupportnetwork.org/group/primary-amyloidosis-al Please join the group. We hope this will make it easier for our members with AL amyloidosis to share…"

Apr 25

Ray was featured

Congratulate them!

Apr 5

Moderatordancermom liked Ray's discussion Good news! And hope to ALL!!

Apr 5

Moderatordancermom left a comment for Ray

"Hi, Ray, I am new to the group. I hope your mother is doing well. I am so glad her treatment was effective. Give us an update and let us know how she is!"

Apr 2

hawaii lovin and Ray are now friends

Feb 12

Ray commented on mike's blog post amyloid syptoms

"My mom has and is experiencing all of the mentioned symptoms and from every post. Some symptoms from before diagnosis and some due to side effects from her treatment. Her tongue, feet, legs swelled for three years before diagnosis. After high dose…"

Dec 22, 2012

Ray commented on Chris's blog post Signs & Symptoms

"It is so true, With each story shared it will help build and stengthen the future awareness of the symptoms and signs and aid others in a timely efficient diagnoses. Best wishes Chris!"

Dec 11, 2012

Ray commented on Chris's blog post Signs & Symptoms

"My mother told numerous doctors of her "swollen tongue" for two years before being diagonosed."

Dec 11, 2012

StuartUK replied to Ray's discussion Carla's Mother

"Carla, I'm sorry to hear this news... my thoughts are with you and your family."

Dec 1, 2012

mamma2sweetpea replied to Ray's discussion Carla's Mother

"Carla, I do not know you but, my heart is with you. I also lost my mother less than a month ago to Amy. She was diagnosed in late May of this year and unfortunately did not make it to the 2 years they had expected. My condolences to you and your…"

Dec 1, 2012

Ray's discussion was featured

Carla's Mother

Carla, I'm very sorry to hear about your mothers passing. My heart sank when I read your post. May the love of those around you help you through the days ahead and may your memories give you strength.My mother is in the process of battling the steep aftermath effects of chemo and a stem cell transplant with hopes to recover. Please know that you are not alone.See More

Nov 30, 2012

3 Comments 1 Like

ModeratorScott Orn replied to Ray's discussion Carla's Mother

"Well said Ray. My best wishes go out to Carla and her family."

Nov 27, 2012

ModeratorScott Orn liked Ray's discussion Carla's Mother

Nov 27, 2012

Ray posted a discussion

Carla's Mother

Nov 27, 2012

3 Comments 1 Like

Profile Information

Are you a patient, relative, friend, caretaker or medical professional?: Patient, Relative, Friend, Caretaker, Medical Professional, Other

When were you (or the patient) diagnosed?: February 18, 2012

What medications and/or treatment have you tried?: Currently taking Remelivid ( oral chemo) + steroids

Please share your story with the community..(even a few words helps us know you are not a spammer. :)): My mother has primary amyloidosis. After 3 + years of tests and doctors they
Have diagnosed her. They found the amyloids in her muscle
Tissue and intestines. She gradually lost her ability to walk, lift her arms,
It started about ten years ago with general muscle bone
Weakness, extreme swelling of her legs, bruising upon touch.
Thank you to doctor Eferbera for diligently testing and
Not passing her condition off. It has taken years. Years of misdiagnosis
And heartache. My mom starts a 3 month daily cycle of
Oral chemotherapy next week, along with steroids and other medicine
To reduce swelling and risk of blood clots. She will then
Harvest her stem cells, have two major chemo doses to
Delete her stem cells and then undergo a stem cell transplant.
She's a trooper. She has spent the last tens years battling a
Mystery disease. When i tell anyone of amyloidosis, it is usually the first they have ever of it.
what i hope for is that with a rare condition/diagnosis comes a
a rare and hopeful undiscovered cure.

How did you hear about us? (This information tells us how to best find new patients to help!): 1. Search (Google/Bing/Yahoo), 2. Facebook, 3. Twitter, 4. Youtube, 5. Blog, 6. Friend/Word of Mouth, 7. Other

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, Other

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.

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Comment Wall (13 comments)

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At 10:33pm on May 9, 2013, ModeratorLouisa Marion's Daugher said…: Hi Ray, How are you? Keep in Touch...Louisa

At 7:48am on April 25, 2013, Moderatordancermom said…: Hi, Ray, we recently formed a sub-group just for AL amyloidosis:

http://amyloidosissupportnetwork.org/group/primary-amyloidosis-al

Please join the group. We hope this will make it easier for our members with AL amyloidosis to share information. Best wishes to you and your mom!

At 9:27pm on April 2, 2013, Moderatordancermom said…: Hi, Ray, I am new to the group. I hope your mother is doing well. I am so glad her treatment was effective. Give us an update and let us know how she is!

At 9:16pm on November 9, 2012, ModeratorLouisa Marion's Daugher said…: Ray...How is your Mom doing now that she's home?

At 3:56am on September 30, 2012, ModeratorLouisa Marion's Daugher said…: Glad you joined the prayer group, Ray....I pray for all those with Amyloidosis every night and pray that a cure is found!

At 9:20pm on June 27, 2012, John "JC" Colyer gave Ray a gift…: Red Ribbon
Happy Birthday!
From the Gift Store

At 5:39am on June 26, 2012, ModeratorLouisa Marion's Daugher said…: Happy Birthday, Ray!

At 6:31am on May 11, 2012, ModeratorLouisa Marion's Daugher said…: Ray, your Mom reminds me so much of my Mom....Although when she was diagnosised there was no treatment, but she kept alot away from us. I believe she was sick even before she was diagnoised and didn't tell us! Stay Strong and Stay Positive. Please know that I pray for your Mom and pray for a cure!