Myeloma has many guises, and the intent of this section of the IMF 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, these narratives may even 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. [See Our Policies below]
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 any case, tell us how you want the story updated: correction, addition, or replacement.
Caregivers or Surviving Relatives: Please fill out the information as best you can... any information you can provide will 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.)
- Person providing the information (patient, spouse, caregiver, family member, etc.)
- Patient's name and Internet or email Address (if applicable).
- Address or current city.
- Birth year and age at diagnosis of MM.
- Type of Myeloma (IgA, IgG, IgM, Kappa or Lambda light chains, amyloid, non-secretory, smoldering, etc.)
- Where did you grow up? (farming area, suburbs, city, within 50 miles of nuclear power plant, etc.)
- Health History prior to MM. (history of allergies, severe allergic reactions, autoimmune disease, other chronic illnesses, major surgeries, etc.)
- How were you diagnosed?
- By whom are you being treated? (by a local hematologist-Oncologist, at a regional hospital, by a doctor that specializes in Myeloma, etc.)
- What symptoms have you had, and how have they changed?
- What were your initial lab findings? What changes, if any, have been documented in your lab tests during the course of the disease?
- What kinds of treatment have you received? Please provide any details that you can about these treatments: types of drugs use, amounts, side effects experienced.
- Did these treatments improve your condition?
- What problems did you run into during treatment?
- Any personal notes or advice to others.
Thank you for taking the time to share your experience.
click here to email your story to Dean Gallea
- We 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.
- We 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.
- We 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.
- If 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.
- If a contributor passes away, and we are notified or otherwise find out, we will move their story to the "In Loving Memory" section in Myeloma Stories. As always, we will remove the story if requested by the family or a caregiver.