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5/17/2008
 


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Add a Story

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Please enter the following information:
1. Patient's Last Name:
  First Name:
2. Birth Year:
3. Gender: Male Female
4. Patient's City of Residence:
     
5. Who is providing/authoring this story? click on one
 
Self
Patient
Spouse
Caregiver
Family Member
Friend
Other, please specify:
     
6. E-mail address:
  First Name of Story Provider:
  Last Name of Story Provider:
     
7. Type of Amyloidosis? click on one
 
Primary AL
Secondary
Familial
  Other, please specify:
   
8. What were the external affected areas or symptoms? click all that apply
 
Swelling
Enlarged tongue
Shooting pains in the legs
Enlarged liver
Fatigue
Feinting
Chest pains
  Other, please specify:
   
9. Current Status? click on one
 
Partial Remission
Full Remission
  Other, please specify:
   
10. What are the areas of major and/or other organ, system or tissue involvement? click all that apply
 
Kidneys
Nervous system
Gastrointestinal
Heart
Liver
  Other, please specify:
   
11. When did symptoms first appear? MM/YYYY
 
   
12. When was the diagnosis confirmed? MM/YYYY
 
   
13. When did treatment begin? MM/YYYY
 
   
14. Place of Diagnosis? click on one
 
Boston University Medical Center
The Mayo Clinic
Royal Free Hospital (Formerly Hammersmith Hosp.) in the U.K.
  Other, please specify:
   
15. Place of Primary Treatment? click on one
 
Boston University Medical Center
The Mayo Clinic
Royal Free Hospital (Formerly Hammersmith Hosp.)
  Other, please specify:
   
16. Primary Treatment received to date? (Please note any "alternative" or unconventional therapies you have used) click all that apply
 
Stem Cell Transplant with High Dose Chemotherapy
Oral Chemo and Steroid's
Thalidimide
Dex
IDOX
  Other, please specify:
   
17. Maintenance Treatment received to date? (Please note any "alternative" or unconventional therapies you have used) click all that apply
 
Stem Cell Transplant with High Dose Chemotherapy (second time)
Oral Chemo and Steroid's
Thalidimide
Dex
IDOX
Various medications for other organ involvement
Local doctor monitoring
Nutrition & Diet
Regular Excercise
  Other, please specify:
   
18. In your own words please enter your story. Please consider the following as you write:
   
 

If you are not inclined to write your whole story and you are doing well, please just describe those things that were most important to your wellness and recovery.

How have you responded to all of the above on an emotional, psychological and spiritual level?

Have you used any particular source of sustenance or support that you would like to mention to others?

Tell about the results of treatment (including improvement or lack of improvement and time span involved; problems encountered with treatment or medication.

What helped? What hindered?

Current status with regards to treatment, medication, and therapies?

What was the health history or life style prior to diagnosis with Amyloidosis?

By whom are you being treated now? (local hematologist-Oncologist, at a regional hospital, etc.

Where did you grow up or live for extended time periods? Were there any environmentally stressful conditions in these places, such as, nearby manufacturing plants, nuclear power plants, waste disposal operations, refineries or any sort of noteworthy contaminating conditions in your home, nearby or at your place of work?

Tell us about yourself or your loved one who has been diagnosed with Amyloidosis. Who will begin to listen to us if we do not tell each other who we are and what we have experienced and learned along the way.

What advice would you give to others who are about to travel a similar route? (Including matters emotional, spiritual, social and financial … or whatever)

What advice or feedback would you give your doctors and other medical practitioners and advisors?

What is the worst of it? What is the best of it?

Family Members and Caregivers: In order to assist others, if you are writing this narrative on behalf of an Amyloidosis patient who has died, please share circumstance of his/her death (i.e., during bone marrow transplant, due to infection, post surgical, was it expected or unexpected, etc.)

   
19. If you wish, enter a "title" of your story
 
20. We would suggest you draft your story off line and then paste it into this text box.
 
 

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Thank you for taking the time to share your experience. Click the "Submit My Story" button and it will be added to the list as soon as our editors format it. Optionally, you can also submit a photo after you submit your story. Its nice to associate a face with something so important and intimate.

 


 

 

 

This page was last revised on November 5, 2007