Monday, December 14, 2009

Radiating Love All Around - by George!

Myeloma patients take note:  Multiple myeloma is a unique cancer and you will not be well served in your treatment decisions if you do not allign yourself with a doctor who specializes in treating myeloma.

Sue was referred by her regular doctor to a very nice cancer doctor in Fresno.  That doctor, an oncologist without experience treating myeloma, upon properly diagnosing multiple myeloma, referred Sue to Dr. Jeffrey Wolf, a specialist in treating multiple myeloma who is practicing at UC San Francisco Medical Center. That referral was the best thing that could have happened under the circumstances.

There are a number of reasons why I say it was the best thing.  Foremost among them from my perspective is that I have enjoyed these all expenses paid vacations to San Francisco. Foremost among them from Sue's perspective is that Dr. Wolf really knows multiple myeloma.  As a bonus, he's a pretty nice guy.

Sue has talked to at least six hematology/oncology doctors in the past ten days about the pain she is experiencing.  About ten days ago the Fresno oncologist misdiagnosed Sue's pain as osteoarthritis and prescribed Vicodin.  The pain persisted and increased, and Friday Sue paid a visit to Dr. Wolf.  He immediately hospitalized her and ordered a new MRI.  The new MRI showed inflamed nerves (nerve roots) radiating out of the thecal sac at the bottom of the spinal cord (in the sacral area near S1, S2, and S3).  As I understand it, the thecal sac is like a, well, a sack, that surrounds the spinal cord.  Several doctors from this hospital stopped by Sue's room to discuss the inflamed nerves and possible causes.  But none of them were certain of the cause.

Enter Dr. Wolf.  He was off Saturday and Sunday but back on the job today.  Apparently unknown to a lot of people, even medical professionals working in the bone marrow transplant/stem cell transplant department of a major regional teaching medical hospital, was this important, arcane fact:  Chemo therapy can kill all (or mostly all) of the myeloma cancer cells in your body except in two "sanctuary" areas of the body.  Those are: (1) in testicles; and (2) in the thecal sac.  Thus, and particularly in regard to the area inside the thecal sac, the blood tests may show the myeloma to be in complete remission (CR), but there can still be active myeloma cells within the thecal sac.

Dr. Wolf is quite certain that is what is happening with Sue, and that it completely explains her recent symptoms.  Further, the only way to treat these cancerous cells within the thecal sac is with radiation.  Fortunately, the radiation will be carefully directed to cause minimal tissue damage, and the nerves can practically take unlimited radiation without damage, while the myeloma cells are very sensitive to the radiation and should be totally eradicated by this treatment.

Sue is now (circa 2 p.m.) undergoing the PET scan which will show Dr. Wolf where all the live colonies of cancer cells are within the thecal sac.  He will then be in direct contact with the radiation oncologist in Fresno to indicate what needs to be done.  Sue is being discharged this afternoon and will be going back to Fresno with me today.  She'll start radiation therapy in Fresno as soon as possible.

Once again, our thanks go to all of you for your prayers and concern.  Additionally, special thanks to Jerry, Ermintrude and Pat for your comments on the issues of radiation and PET scans.  I raised your concerns with Dr. Wolf.  Pat, you are correct that the PET scan is the only way for Dr. Wolf to identify where the cancer cells are clustering.  Jerry and Ermintrude, this radiation will be very directed and, for better or worse, it is the only way to kill myeloma cells within the thecal sac.

So off we go, radiating love all around.


JHNickodemus said...

Hmmm all expenses paid by you and the insurance company? Haha. Glad you back home, radiating the love and waking up early.

Anonymous said...

As a medical transcriptionist, sometimes I can "hear" the right word if I can know what you heard phonetically. For what it's worth, I believe what you refer to in your last entry as something like "gimbray syndrom" is Guillain Barré syndrome. Maybe not information you need since your doctor dismissed it, but since you like to investigate everything, try that. My thoughts and prayers are with you all. Thanks again for staying in touch and keeping your friends so well informed. - Lotti D

Little Spouse in the Old House said...

I tried to think of something clever to write about "radiating" but all I could think about at this time of year was the Christmas star radiating it's Godly light and overwhelming any darkness. And I thought that might be good enough! Love and blessings- Janice and Bruce too!

Chris said...

My name is Chris and I was diagnosed with MM in November 1992. I had chemo and autologous stem cell transplant the following spring and have been 'in remission' ever since! Actually I believe that I am cured. Not only did I get the medical treatment but prayer also. I prayed and 'spoke to my body' commanding it to kill the cancer. I made a very rapid recovery from the high dose chemo prior to the stem cell infusion (half the time of other patients) and have not had a bad blood test since. Even marrow samples have been totally negative.

You can make it through, just believe.