Has anyone with MBC BEEN DIAGNOSED WITH MULTIPLE MYELOMA?

[Kathleen1999]

I have been diagnosed with MBC for 19 years. On May 29th after noting my declining hemoglobin I was told after a bone marrow biopsy that I had Multiple Myeloma. My oncologist and I were both really shocked.

[Juliandrea]

I can imagine after 19 years, how shocking this was. Praying for you . What is the next steps. ? You are an inspiration with your story. And a very strong woman for sure. What treatments have you had all these years? We’re you diagnosed with MBC from the beginning, what year?

[Kathleen1999 in reply to Juliandrea]

I was stage zero on the left in 92; stage IV on the right since 99. Bilateral mastectomies, tomoxifen, radiation tx 3, 7 years on Xeloda, years on Arimidex, have been on Faslodex since 2011.

Regarding the multiple myeloma: I am doing 6 rounds of chemo and if all goes well I will have a stem cell transplant.

Thanks for your supporting prayers.😀

[Juliandrea in reply to Kathleen1999]

Thank you for your reply. All will go well, you are clearly very strong and will not let this control you. All good positive energy coming your way. Stay in touch during chemo if you can so we can support you. We’re you HER positive or negative in 1999?

[Kathleen1999 in reply to Juliandrea]

I was estrogen and progesterone positive and Her2 negative.

[Toomanyquestions in reply to Kathleen1999]

Hi there, do you have any advice for how you have dealt with this for so long please? X

[SeattleMom]

So sorry for your news, Kathleen. I've not heard of someone being treated for MBC and then developing multiple myeloma. You mention that you were diagnosed with Stage IV in 1999 but not where metastases were found? Did the metastases arise after the tamoxifen or before?

We have a close friend (who is also my son's boss) who was diagnosed with MM in December, with tumor encircling his spine. He has already had one stem cell transplant and will be undergoing two more. He lives in Seattle but is receiving treatment at the Myeloma Institute at the University of Arkansas. This center describes itself as "the most comprehensive center in the world for research and clinical care related to multiple myeloma and related diseases." I'm not sure where you live, Kathleen, but this may be a great source for a second opinion: uamshealth.com/medicalservi...

God bless you! Linda XO