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A friend at church shared that he had MGUS, and was see an Oncologist nearby. I told him I could only find a MM Specialist in Los Angeles. I looked up his doctor and saw he said he was interested in lots of disorders but not MM. An Oncologist is a Specialist but not necessarily a MM Specialist. Check out the list of interests this doctor has. No where does it say MM Specialist.
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Members tackled the important question of whether their oncologist is a true Multiple Myeloma specialist, with many sharing that they see... Read more
And…not all oncologists are MM specialists. Please find an oncologist that specializes in MM. It makes a major difference.
A good way around this is to Get a MM Specialist from another hospital to work in conjunction with the local oncologist. I am in Missoula, MT and there is not a MM Specialist resident in Montana, or Idaho. I went to Fred Hutchinson Cancer Care in Seattle, which is a research facity for MM. I asked if they would do that, and they were glad to do it. BUT---I also asked the local oncologist if he/she would be willing to work with Fred Hutch as well. Although my local guy agreed, he never talked to the specialists! Eventually, I have had to "fire" him. As it turned out, FHCC hired on a MM Specialist with a license to operate in MT, so that solved a lot of problems. I do telehealth with FHCC, but have my local gal, who is an excellent doctor do my treatment of Darzalax FasPro/Revlimid combo bi-weekly.
Make sure everyone is agreeable with the arrangement and respect how each contributes to the situation. FHCC is amazing, and very willing yo work with you and others! Do your own research, and oversee the treatments! I am doing quite well as a result, and my I trust my present local gal oncologist. My MM is in a "holding pattern" and under control.
Which reminds me, find out what is YOUR "normal", your blood draw numbers may not reflect the national norm, but they are YOUR "new normal". As long as they stay fairly consistent, and they may oscillate between a hi & lo threshold, yet be just fine. Find a good doctor, or nurse, and talk to them! Do not be afraid of questioning what you see. The good ones will work with you, the not-so-good won't, but there are usually protocols that allow you to change the medical team.
Take care, be curious, and learn!
Pbaldini, The list you posted for his doctor does say "bone marrow disorders and does also list MDS which is a blood cancer. The doctor is probably a hematology/oncologist. I looked up doctors in Santa Ana and there are several. My doctor is a hematology/oncologist. He specializes in blood/bone marrow cancers so yes he is a specialist in both these fields. He does not do only MM. My husband goes to him for monitoring his MGUS, my mother went to him for MDS, and I go to him for my MM. He was the doctor who determined my 4 cycles of chemo/immunotherapy at the cancer center where his office is. The 2 major hospitals here in town do not do stem cell transplants so he sent me to St Louis to Dr Vij who specializes in bone marrow transplants and treatments for leukemia and myeloma. He leads a research program, at Washington University Medical Campus, focused on treatment of multiple myeloma.
It's true that not all oncologists are multiple myeloma (MM) specialists. While oncologists are trained in cancer care, MM specialists often have additional expertise in plasma cell disorders, including MGUS and MM. If your friend has MGUS or MM, it may be beneficial to consult a hematologist-oncologist or a specialist with Show Full Answer
@A MyMyelomaTeam Member,
After 10 days in the hospital with pneumonia, he is home, but he still has pneumonia and a low grade fever. Doctor refused to take more fluid out of his chest even though my son in uncomfortable. Hopefully, he will get better day by day, with God's grace.
Paula🌹
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