One man's experience with multiple myeloma

April 2, 2012

I saw David to get the results of the Bone Marrow testing, the Bone Survey and the Blood Work.  The diagnosis of Myeloma had been confirmed.

The Bone Marrow results showed I had about 40% myeloma-plasma cells in my marrow, where the normal would be about 3% to 6% plasma cells in the marrow.

The Bone Survey was actually pretty normal as no holes were found in my skeleton.  This was good news.

The Blood Work was more complex.  The good news was that my Calcium was normal and kidney function was normal.  The Albumin was normal.  My Beta-2 Microglobulin was above normal.  The immunoglobulins were off kilter.  A and M were low and G was high.  This is typical for myeloma.

David recommended RVD therapy – a combination of Revlimid, Valcade and Decadron.

Revlimid is the brand name of lenalidomide a newer relative of thalidomide; Valcade is the brand name of bortezomib; and Decadron is the brand name of dexamethasone which is only available today as the generic.

He said it is a well-tolerated therapy, especially for someone such as me, in otherwise good health.  He also said that better than 90% of myeloma patients respond to this therapy.

David also suggested that I see the doctors at the Moffitt Cancer Center in Tampa to discuss Autologous Stem Cell Transplant therapy as an option, because he thought I would be eligible.  He faxed over my records to Moffitt and said they would call to set up an appointment.  He also said that my therapy could wait until I had seen them because I was not that sick.

I told David that I had planned to have a second opinion on treatment and that I would be going to the Lynn Cancer Center in Boca Raton for this.  He was absolutely OK with this, and encouraged it, and arranged to have my records faxed over there as well.  I thanked him for his care and said I would let him know of my decision after I had met with the doctor at Lynn.

April 1, 2012

Today is Palm Sunday.  Kathleen and I went to our usual 10:30 service.  This being the first Sunday of the month, there is always a period of Spiritual Healing offered to any who would like to receive this help.  This also being Palm Sunday, which is a longer than usual service, the Healing Service was after the liturgy rather than being in the middle of the service.  The line I was in took me to Faye, our Deacon at The Chapel of St. Andrew.  Faye is also the Chaplain at St. Andrew’s School.  After the Laying on of hands from Faye, I found Nell and Cheryl and told them my shoulder was actually feeling better.  I had better movement and it was not as sore.  Thank you, God!  Thank you, Jesus!

March 30, 2012

I went for the Bone Survey today.  Basically this is a series of close up X-Rays.  The purpose is to look for any small holes or other small fractures that would suggest a more advance stage of Myeloma.  It took almost 2 hours to take all the X-Rays.

March 28, 2012

I again saw Neil and Margot, my chiropractor and massage therapist.  It was the first time I had been there since I picked up the MRI report and made the appointment with Manny.  They had been worried about me and I filled them in.  Neil said that I had to keep my spirits up and not allow negative thoughts to enter into my mind.

He told me about a clinical study that had been performed on a group of diabetics.  They were all fed, what was for diabetics, a bad meal, high sugar and high carbohydrate.  They were then divided into 2 groups.  One group went to see a horror movie, full of negative very unhappy images.  The other group saw a heart-warming drama with a happy ending.  The horror movie group’s insulin levels kept going up and up as they watched the movie.  The heart-warming drama group saw their insulin levels drop as they watched the movie.  No negative thought allowed!!

March 27, 2012

I met with David, my first hematologist oncologist.  David had blood drawn for some additional tests that needed to be run.  He also took a Bone Marrow sample.  I must say that this was not fun.  Not knowing that he would have given me some drugs to dope me up some if I had someone to drive me afterwords, I had driven by myself.  It wasn’t fun.  Afterwords, it was actually quite weird.  The skin around the the injection was numb from the local anesthetic but the spot in my pelvis from where he took the sample still hurt.  So, as I left his office and called Kathleen to tell her how it went, I told her I had both a sore ass and a numb ass at the same time.  She laughed, because I had meant it to be funny.  David also said I needed a Bone Survey and this was scheduled for 3/30.

March 26, 2012

I met with Leslie, my family physician.  I gave her copies of all my test results and we discussed the options open to me.  She recommended David as a hematologist oncologist.  We also set up for my regular physical to take place on 5/7.

Later that day I made an appointment with David on 3/27.

March 25, 2012

Today is the 5th Sunday in Lent.  Kathleen and I went to the Chapel of St. Andrew for the 10:30 service.  We spoke with Mother Debbie and told her about the diagnosis I had received.  She told us more about the Order of St. Luke the Physician and introduced us to Nell and Cheryl, whom we had not met yet because we were still quite new and had not met everyone yet.  Nell and Cheryl asked me if I would like to speak more about my condition with them.  So, all four of us went into the chapel to talk.  I told them of my story and Nell told us more about spiritual healing.  They also said that there are about 12 members of our parish that would not be alive today, or would be in much worse condition, had they not experienced spiritual healing at St. Andrew’s.  After learning more, they asked if I would like to have a “Laying on of hands”.  I consented and Nell and Cheryl, with Kathleen by my side, place their hands on my head and right shoulder and prayed.  It was a wonderful prayer, truly heartfelt, and I knew that this was going to do me good.

Nell gave me a copy of a book by Agnes Sanford, “The Healing Light” to read.  She said is was the best book available on spiritual healing of any she had ever read.  She said I could practice on my own as well.  I started reading the book that evening.

March 23, 2012

Things somehow worked out that I was not to learn the result of my Bone Biopsy until today.  I met with Manny, my orthopedist, who told me that I had Myeloma which is according to the MMRF:

Multiple myeloma, also known as myeloma, is a hematologic cancer, or cancer of the blood. It is the second most common blood cancer, after non-Hodgkin’s lymphoma, and represents approximately 1% of all cancers in white individuals and 2% of all cancers in black individuals.

Manny said that he was actually very happy that this was the diagnosis because all the other possibilities were much worse.  He said that I should see a hematologist oncologist for further evaluation and treatment.  He rattled off three names, one of which was David.  He gave me a hug and a big smile before I left his office.

Later that day I made an appointment to see Leslie, my DO on 3/26 to further discuss my options.  According to Wikipedia:

Doctor of Osteopathic Medicine (D.O. or DO) is a professional doctoral degree for physicians in the United States. Holders of the DO degree are known as osteopathic physicians and have the same rights, privileges and responsibilities as MDs. Although DOs have traditionally been family physicians, today many physicians holding the DO practice in every specialty field in medicine.

March 14, 2012

I had the Bone Biopsy done at University Hospital, Kathleen drove because I would not be able to drive home.  Basically, I was given enough drugs to knock me out because I’m told no one want to have a Bone Biopsy done any other way.

But here’s the cool part.  The biopsy is taken while you’re in the CT Scanner!  So they get me all set up in the scanner, and then the radiologist, Gaston, comes in and, with the imaging from the CT scanner, knows exactly where and how deep to insert the needle to obtain the biopsy.

After the biopsy, Kathleen drove me home and we relaxed the rest of the day.

March 12, 2012

I met with Manny, my orthopedist. He had the results of the Bone Scan and the CT Scan. The good news was that the Bone Scan showed no problems anywhere else in my skeleton other than the one we knew about in my right clavicle. The bad news was that the CT Scan showed that there was definitely something there and that a Bone Biopsy was necessary to find out was was in my clavicle. I met with Gaston, the radiologist who would take the biopsy. This was scheduled for 3/14.