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Guidelines for Myeloma Stories

 

Guidelines for Your Submission to the
Multiple Myeloma Survivors' Stories Website

Myeloma has many guises, and the intent of this website is to give Multiple Myeloma patients a place to share their stories and hopefully to educate health providers on the experiences of Myeloma patients. It is our hope that if we get enough detailed information that these narratives may be of use to healthcare professionals studying and treating Myeloma.

Stories are welcome from patients, caregivers, and surviving family members. Please try and include the information below in your narrative (as a story rather than just answering the questions below). If there is anything else you want to share or feel is important please feel free to add it to your story. If something is unclear or we need more information we will contact you. [Our Policies]

We want to update these stories as you have new information to add, so feel free to send progress reports. If it's a minor change, just email the change and we will edit the story. If it's more than a few sentences, an attached word processing file is better. In either case, tell us how you want the story updated: correction, addition, or replacement.

Caregivers or Surviving Relatives: Please provide the information as best you can, since anything may be of use to other patients. If you are writing on behalf of a Myeloma patient who has died, please share the circumstances of his/her death (i.e. during bone marrow transplant, due to infection, post surgical, was it expected or unexpected, etc.)

Info we need:

bulletPerson providing the information: patient, spouse, caregiver, family member, etc.
bulletPatient's name
bulletAddress or current city
bulletBirth year and age at diagnosis of MM
bulletType of Myeloma: IgA, IgG, IgM, Kappa or Lambda light chains, amyloid, non-secretory, smoldering, etc.
bulletMajor treatment protocols taken: Thalidomide, Revlimid, Velcade, radiation, stem-cell transplant, etc.
bulletSignificant events, such as bone fractures, kidney failure, etc.
bulletCurrent status of your Myeloma: immunoglobin numbers, stage, general health

Optional, but desirable:

bulletAn Email address to be put on your page, if you wish to allow others to reach you
bulletAn alternate email address of a close relative or friend, which we will keep off the site and use for communication only if we get no response from the other address
bulletA picture of yourself (any image-file attached to your message is fine, or email us if you wish to send a photo we can scan)

Other things to include in your story:

bulletWhere you grew up, lived or worked for a long time. As examples: farming area, suburbs, city, within 50 miles of nuclear power plant, etc.
bulletYour health history prior to MM, such as a history of allergies, severe allergic reactions, autoimmune disease, other chronic illnesses, major surgeries, etc.
bulletHow you were diagnosed
bulletBy whom you are being treated, such as by a local hematologist-Oncologist, at a regional hospital, by a doctor that specializes in Myeloma, etc.
bulletSymptoms you have had, and how they have changed
bulletYour initial lab findings, and changes, if any, documented in your lab tests during the course of the disease
bulletKinds of treatments have you received, including any details that you can about these treatments, such as the names of drugs, dosage, and side effects experienced
bulletWhether these treatments improved your condition
bulletProblems you ran into during treatment
bulletHow your attitude has changed, and how you are feeling now
bulletAny personal notes or advice to others

Please avoid:

bulletProselytizing any specific treatment that you believe was beneficial for you to the exclusion of others
bulletRecommending that others will achieve the same benefits you did if they follow your advice - this site does not offer medical advice

We suggest writing what ever you think might help people understand the way your Myeloma has developed and affected your life: symptoms, pre-diagnostic events, diagnosis, early treatment, progression, lab findings, ongoing treatment, prognosis, and how it has affected your life, outlook and attitude. Thoughts about your interactions with health professionals, medication side-effects you experienced, any decision-making processes you went through, and anything you think might help someone else are all welcome. Try to avoid rambling, repetition and conclusions based solely on guesswork, that might serve to confuse or mislead anyone.

Thank you for taking the time to share your experience.

Please email your story to Dean Gallea at:
mstories(.)submit(@)gallea(.)com [remove the ( )s]

Our Policies:

bulletWe will honor all requests to post stories by Myeloma patients or their caregivers that are intended to help others become informed and deal with the treatment and consequences of this disease.
bulletWe ask that the contributor check the Guidelines above and try to give the information requested. We will proofread, edit for spelling and grammar, and format the story for the site.
bulletWe leave it up to the contributors to send us updates whenever they want to. At any time, contributors may request that we pull their story.
bulletIf there is no update for over a year, we will send out reminders. If we get no response to a final reminder within the next year, we will remove the story.
bulletIf a contributor passes away, and we are notified or otherwise find out, we will move their story to the "In Loving Memory" section of the site, or remove the story if requested by the family or a caregiver.
bulletWe NEVER release any information from this site to any other party, nor do anything else with the personal information in your story.
bulletWe do allow other websites to link to our Home Page. (There is no way to prevent this on the Internet anyway.) We have directives on our site that forbid legitimate search engines from indexing individual pages.
bulletWe generally disallow mention of products or services for sale. Websites and books related to cancer written by story contributors are an exception, allowed on a case-by-case basis.

What others have said about this site:

I wanted to update my site! I still get many emails from people who have read it, and say I am such an inspiration! "THANK YOU" for giving me the opportunity to counsel people, the site continues to heal me, too, for I need them as much as they need me!

 

Site 2000-2015 Dean Gallea (in loving memory of June Brazil)

Site 1996-1999 June Brazil - Webmaster:
(To email story contributor, see address at top of story)