After all the tests, and after discussion with KU Cancer Center tumor board, my oncologist said that I was definitely in the smoldering stage of multiple myeloma. My follicular lymphoma is stage 2A. He said that everyone decided that it is better to watch and wait, with him checking me every month for the myeloma and every 3 months for the lymphoma. So far I feel good physically.
I am also going to send a copy of my records to MD Anderson for a second opinion, which he said was fine with him and that KU encourages a second opinion. There was a myeloma specialist on the tumor board that discussed my case.
Thanks to everyone for all the support on the board and I will continue to read and participate in the forum.
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Re: Recently diagnosed with lymphoma & myeloma
Tracy J,
If you should read this, I called MD Anderson, Mayo, and Sloan Kettering about mailing my records for a second opinion, but they all said I would have to make an appointment and see a doctor in person. Do you have any ideas other then making an appointment?
If you should read this, I called MD Anderson, Mayo, and Sloan Kettering about mailing my records for a second opinion, but they all said I would have to make an appointment and see a doctor in person. Do you have any ideas other then making an appointment?
Re: Recently diagnosed with lymphoma & myeloma
Hi Gary,
There was a posting here in the forum recently that explained that long-distance consultations are often complicated by state licensing laws. The doctors at the centers you contacted aren't licensed to practice medicine in your state, so they can't provide you advice by phone or email.
Some centers, however, are making it possible to do what they are calling "electronic consultations", or "econsults." The way that works is that you go through a doctor or medical practice in your home state, who arranges for an "econsult" with a cancer center in another state. This econsult is actually between a local doctor and one or more doctors at the Mayo Clinic.
I checked, and it turns out that the Mayo Clinic has a partnership with a hospital in Topeka, Kansas that makes such econsults possible for patients seen by physicians at the Topeka hospital. See this press release for more information.
According to the press release, Mayo has similar arrangements with hospitals and health care networks in a many different states.
MD Anderson is building up a similar network of physician and hospital affiliates, but it doesn't have any affiliates in Kansas. Here's a list of the MD Anderson affiliates.
I don't think that Sloan Kettering has something similar ... or at least I wasn't able to find anything similar.
Good luck!
There was a posting here in the forum recently that explained that long-distance consultations are often complicated by state licensing laws. The doctors at the centers you contacted aren't licensed to practice medicine in your state, so they can't provide you advice by phone or email.
Some centers, however, are making it possible to do what they are calling "electronic consultations", or "econsults." The way that works is that you go through a doctor or medical practice in your home state, who arranges for an "econsult" with a cancer center in another state. This econsult is actually between a local doctor and one or more doctors at the Mayo Clinic.
I checked, and it turns out that the Mayo Clinic has a partnership with a hospital in Topeka, Kansas that makes such econsults possible for patients seen by physicians at the Topeka hospital. See this press release for more information.
According to the press release, Mayo has similar arrangements with hospitals and health care networks in a many different states.
MD Anderson is building up a similar network of physician and hospital affiliates, but it doesn't have any affiliates in Kansas. Here's a list of the MD Anderson affiliates.
I don't think that Sloan Kettering has something similar ... or at least I wasn't able to find anything similar.
Good luck!
Re: Recently diagnosed with lymphoma & myeloma
Thanks Cheryl, I am just now getting back to the forum site. I will check into the information that you gave me and see what happens. I do appreciate the help.
I just saw my doctor about my recent blood work and CT scan and full skeletal x-rays and everything looks stable for both the lymphoma and the myeloma. My myeloma is still smoldering and my lymphoma has not grown significantly.
Thanks again for the help.
I just saw my doctor about my recent blood work and CT scan and full skeletal x-rays and everything looks stable for both the lymphoma and the myeloma. My myeloma is still smoldering and my lymphoma has not grown significantly.
Thanks again for the help.
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