[guest]

Going for a second opinion - what should I know?

by guest on Sat Oct 19, 2013 7:05 pm

My husband has completed 16 weeks of treatment, cyclophosamide and Velcade. Dex was withheld due to altered mental status. He has had an excellent response. He receives treatment at the University of Iowa. Our oncologist is sending us on Monday for a referral to the Mayo clinic in Rochester.

My husband has severe cardiac issues. He suffered a cardiac arrest 2 years ago, requiring 25 minutes of CPR. This resulted in an anoxic brain injury. He made a good recovery to this. Has some deficits, but functions well. Prior to diagnosis of Multiple Myeloma he had a pretty severe mental break. Thats when this diagnosis was made. We are going to Mayo to find out if he is even a candidate for a stem cell transplant. And to find out what protocol they would use because the U of I has a very agressive pretransplant protocol.

I read, and read all I can about multiple myeloma, but quite frankly, after a few minutes my head spins at all the terms and tests and lab results. And I work in health care, so I'm not an idiot when it comes to understanding medical terms. Throughout the whole of his medical issues I have become a strong advocate for him. I'm just afraid I'm going to get lost in this process. And he trursts me implicitly to help him understand.

What are the most important things I'm going to need to know?

Forgot to mention he had triple bypass surgery last year followed by to additional stents. And he is IGG lambda, And he shows light chains in his urine. At diagnosis his creatinine was at 2.3. But hovers at 1.3 or 1.4 now.

Thanks for any input you may have.

[Dr. Edward Libby]

Re: Going for a second opinion - what should I know?

by Dr. Edward Libby on Mon Oct 21, 2013 8:42 pm

Hello,

Your question is really really broad but ... you are on the right track. One way to really help your husband and your family is to become informed & educated about the disease and its treatment. Read the pamphlets that are available at your doctors office or get them from reliable sources on the web. The Beacon has a very nice list for you under the "RESOURCES" section and many links to other excellent myeloma patient groups under the "LINKS" section. I am especially fond of the International Myeloma Foundation, the Leukemia and Lymphoma Society and the Multiple Myeloma Research Foundation for sources of information. The American Cancer Society also has an excellent website and educational resources.

You can take solace that your husband is going to be seen in one of the best myeloma centers in the world ... the Mayo Clinic at Rochester, Minnesota. He will have access to the very very best of care there. The University of Iowa is great too so your husband is in good hands all around.

I hope the visit at Mayo went well today. I wish you and your husband the best of luck in your journey with this challenging disease.

[Jaksix]

Re: Going for a second opinion - what should I know?

by Jaksix on Mon Oct 21, 2013 10:49 pm

I am sorry to hear that your husband has so many other problems on top of multiple myeloma. I am seen at the U of Iowa as well. I was initially diagnosed at Mayo, but life very close to the U and was lucky enough to stumble upon Dr. Tricot. Yes, his treatment plan is very aggressive. Is he willing to treat less aggressive? Will he treat along with Mayo recommendations? I assume you live somewhat close to the U. With so many other health problems, wise decision. mayo is great. They will take great care of your husband. Be prepared to be exhausted as they will have your husband thoroughly tested and consulted in a matter of days.
Feel free to private message me.
Please let us know how the appointment goes.