[ligo]

Father newly diagnosed, has intense back pain

by ligo on Fri Jul 01, 2016 10:06 am

Hi all!

This is my first post. Thanks for being here.

My dad was diagnosed with stage 3 multiple myeloma two weeks ago. He has had several back fractures, which were treated with kyphoplasty and now may have another.

The doctors wanted him to start chemo immediately. We are learning a lot quickly.

He has intense back pain, but terrible reactions to Vicodin (hydrocodone and acetaminophen / paracetamol) and other opioids – nausea, itchy skin, lethargy, and loss of appetite. He is suffering so much.

We are in Michigan. Any other Michiganders out there? We are considering getting a second opinion at the University of Michigan.

Thanks,
Lisa

[Multibilly]

Re: Father newly diagnosed, has intense back pain

by Multibilly on Fri Jul 01, 2016 11:03 am

Hi Lisa,

Welcome to the forum. You may find some kindred spirits and useful advice in this forum thread:

"Myeloma specialist recommendation - Michigan or Chicago"

[kerrirunnergirl]

Re: Father newly diagnosed, has intense back pain

by kerrirunnergirl on Fri Jul 01, 2016 11:43 am

Hi Lisa,

We are from Michigan (Temperance). We went to The University of Michigan for a second opinion and also went to see Dr. Jeff Zonder at Karmanos Cancer Center in Detroit for a 3rd opinion. We loved Dr. Zonder. He is a myeloma specialist and while we get treatment in Toledo, Ohio, we see Dr. Zonder once a year and will see him when and if relapse occurs,

Would highly recommend Dr. Zonder.

Good luck to you both. Kerri

[faithoverfear]

Re: Father newly diagnosed, has intense back pain

by faithoverfear on Fri Jul 01, 2016 12:38 pm

You are of course in shock and grief with this diagnosis. It is important to get started very quickly. But it is crucial to start on the right path.

You're pretty close to the Mayo Clinic, one the leading myeloma treatment centers in the U.S. My experience is that their genetic testing identified the best treatment for ME. Their general approach is to minimize toxic side affects of treatment. I would start there immediately to get the genetic test going. It takes quite a while to complete.

About genetic tests ... Most, if not all, hospitals send their bone marrow biopsies to a com­mercial lab for processing. The commercial lab will only preform tests that are covered by insurance. Mayo does those tests PLUS additional tests that are paid for by their research efforts. These tests can make a big difference in selecting treatment.

If travel to Mayo is not an option, your local hospital may be able to send the biopsy to Mayo for processing.

My lessons learned: Doctors offer treatment which works well for the majority of patients. However, no treatment works for everyone. The key is to find the least toxic treatment that works for your Dad.