Connect with others who understand.

Sign up Log in
Quick Links
Q&A Treatments A-Z Help Center Guidelines Crisis Accessibility
Resources
Emotional Well-Being Living with Myeloma Myeloma Condition Information Myeloma Symptoms Myeloma Treatments All Resources
About MyMyelomaTeam
What is This Site Terms of Use Privacy policy
Powered By
Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Hoping Someone Can Help Give Us Some Insight On This Horrible Disease.

A MyMyelomaTeam Member asked a question 💭
Vienna, WV

My husband was diagnosed Iga lambda light chain in Feb. 2019. He has been on 5 other lines of treatment and is currently on Kyprolis, Sarclisa and dex. They did a pet scan in December and it shows lots of soft tissue tumors in his liver, spleen and throughout the skeleton. Two weeks ago his eye started to pertrude out and they thought it could be conjunctivitis, but continued to get worse. Went to eye Dr who then sent us to a university hospital to have it looked at closer. After CT it showed… read more

January 18, 2023
•
View reactions
A MyMyelomaTeam Member

Didi, like I tell everyone run don’t walk to a MM specialist! My own oncologist sent me to one!

January 20, 2023
A MyMyelomaTeam Member

Certainly, here is some insight on multiple myeloma based on the knowledge base:

- Emotional Impact: Living with multiple myeloma involves significant emotional challenges. Patients often experience emotional triggers daily, even if they appear healthy and happy. The journey includes dealing with nausea, fatigue, and Show Full Answer

Certainly, here is some insight on multiple myeloma based on the knowledge base:

- Emotional Impact: Living with multiple myeloma involves significant emotional challenges. Patients often experience emotional triggers daily, even if they appear healthy and happy. The journey includes dealing with nausea, fatigue, and infections, alongside the mental strain of relapse and remission cycles.

- Diagnosis and Treatment: The process of diagnosing multiple myeloma can be drawn-out and confusing. Selecting the best course of treatment is another major challenge. It's crucial to find the right words to explain the diagnosis to loved ones, especially children.

- Support and Community: Sharing experiences with others who understand the condition can be incredibly helpful. Platforms like MyMyelomaTeam provide a space for over 22,000 members to ask questions, give advice, and share their stories.

- Financial Burden: Cancer treatment often comes with unexpected costs, including specialist visits, tests, and medications. Health insurance may not cover all expenses, leading to significant out-of-pocket costs. It's advisable to speak with the hospital's billing department for potential financial assistance.

- Celebrity Influence: When celebrities like Tom Brokaw share their diagnosis, it helps destigmatize the disease and provides hope and inspiration to others facing similar struggles.

For more detailed information, you can refer to the articles and resources available on MyMyelomaTeam.

July 11
A MyMyelomaTeam Member

I agree with JeGist! It is time to bring in the big guns! I was at the end of the line for what Maui had to offer me, so I went to Fred Hutch in Seattle, and they started me on a drug I could not get on Maui. That was two years ago, and I am doing great now! I did my research and went to the top guy for MM at Fred Hutch, and he knew exactly what to do. Do you know who the top MM oncologists are in your area? Maybe just a phone call could be a good start. I wish you and your husband well!

February 10
A MyMyelomaTeam Member

Dixl I am so sorry. My heart goes out to you and your family🙏❤️🙏

May 3, 2023
A MyMyelomaTeam Member

JeGist,
Thank you for the hug. My husband lost his battle with MM after no longer being able to tolerate treatments.
Became too weak after last round of Kyprolis and Sarclisa. You are right about finding a specialist. We waited too long!

May 3, 2023

Related content

View All

Can Someone Give Some Insight On CMMC Test.

A MyMyelomaTeam Member asked a question 💭
Ashdown, AR
October 5

Hi Everyone I Hate To Bother All Of You But I Got Another Message From Polygon Health About Us Signing Up They’re Really Trying To Help Us.

A MyMyelomaTeam Member asked a question 💭
Springfield, PA
August 27

AM I RELAPSING?

A MyMyelomaTeam Member asked a question 💭
Moorestown, NJ
July 13
Putting Yourself First
Telling White Lies
Who’s the One Person You Should Always Keep Your Promise To?
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data Policy and Privacy policies.Your privacy is our priority Lock Icon
Already a Member? Log in