Diagnosed with both multiple myeloma and amyloidosis: Anyone else?

Is there anyone here with a confirmed diagnosis of multiple myeloma and any other blood disorder(s)?

I initially was diagnosed with CML. Five years later I developed multiple myeloma. I am looking for others that have developed two or more blood disorders

As my husband's advocate, I am trying to understand several processes (the learning curve is steep!)
How do I find the Standard of Care for this dual diagnosis? We just finished a two week fight with the insurance company over a PET scan. As we move toward treatment, I question whether there will be delays due to denial of authorization from our insurance carrier. I'm told if it's a standard of care procedure, it's covered. Is that accurate? Can I use that to appeal future denials?

@mgm4kc
Ugh I’m so sorry. Generally my physician’s office advocates for something she has ordered. Have you spoken to the nurse or doctor about this problem? The hem/onc clinic should be able to help with this.

@mgm4kc, I'm tagging a few other members like @cemeterygal01 @mkempson42 @naiviv @tlcox49, who also have experience with a dual diagnosis of multiple myeloma and amyloidosis.

Have you considered enagaging with an oncology social worker to help you work through some of the entanglements of insurance approvals. New patients/caregivers sometimes are not aware of this role that social work can play. Learn more in this article:
- How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

Is your husband in the care of a team at a cancer center?

Thanks Colleen, this is very helpful. We are so new to this new journey, we don't know where to find resources. Just starting to realize how much this will invade our lives and hoping to understand more about the insurance process. We were just switched to a new oncology team and I will ask about the social worker support team.
Appreciate your message.

Yes, it will take more of your time but having the "correct attitude is VERY important." From the beginning the doctor told me that my world had not come to an end. I realized yes, I had Multiple Myeloma Stage 1 but "it didn't have me." Ask Mayo team for literature, DVDs, and speak with knowledgeable Care Team members. These things are time well spent. I am replying, and I hope this helps. Now to resume projects that are very important to me. All.

Is anyone dealing with either of these cancers? My oncologist is currently trying to rule out AL Amyloidosis. Still going through testing, but have been diagnosed with Multiple Myeloma.

huron
Have you entered either of these 2 cancers above in the search. There are many discussions on this site. Also, soon you will have a post from a moderator or someone who is in the know about your concerns.
I am an MDS patient, and I found almost all answers to my questions here on connect. I am treated at City of Hope in California but all information and compassion i found here is precious and helpful. Relevant and useful. Coming directly from those who have traveled this path.

@huron Welcome to Mayo Clinic Connect!

If you go to the blood cancer support group, which is where we are right now, and use the search bar to type in multiple myeloma, it will give you discussion and comments where that is mentioned. Here is a thread that might interest you: https://connect.mayoclinic.org/discussion/myeloma-newly-diagnosed/

What has your medical team talked to you about as far as treatment is concerned?
Ginger

Sorry
I do not know anything about these diagnosis