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

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Hoping Someone Can Help Give Us Some Insight On This Horrible Disease.
A MyMyelomaTeam Member asked a question 💭

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

posted January 18, 2023
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A MyMyelomaTeam Member

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

posted January 20, 2023
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!

posted February 10
A MyMyelomaTeam Member

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

posted 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!

posted May 3, 2023
A MyMyelomaTeam Member

I am so sorry, I just realized I wrote your name incorrectly.
Praying for you both. Hopefully there is a new treatment plan available 🙏❤️🙏

posted January 19, 2023

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