One man's experience with multiple myeloma

April 22, 2012

Today is the second Sunday after Easter. Kathleen and I went to our usual 10:30 AM service. We met with Nell, Faye, Nancy and Debbie and I told them about this blog.

There is a reason why I feel very confident about my up coming therapy starting tomorrow morning. Besides a fine array of medical professionals, friends and co-workers, I’ve got a dedicated group praying for me regularly. Thank you to all of you! My shoulder continues to heal and feel stronger each day. Each night I also pray for healing as taught in the book by Agnes Sanford. Then add Kathleen on top of all of this and her love and support together with that of my children, Kirsten and Kris, there is really nothing I cannot achieve in beating this disease into submission.

April 20, 2012

I had my regular appointment with Neil and Margot.  Margot performed her usual excellent work on my shoulder.  Neil did his usual adjustments and again reminded me how important it is to remain positive throughout this whole process.

April 18, 2012

I met with Warren late in the afternoon, this time without Kathleen.

We discussed various therapies that he thought were appropriate for me in my otherwise healthy condition and being in early Stage I.

He explained that my Blood Work was really not that far off normal.

The first option was RD – Revlimid-Decadron. The advantage of this therapy is that it is entirely oral and that I could presumably continue to take these two drugs for 5 years or more as the typical response was very good and someone as healthy as me could withstand the side effects pretty easily. Having looked up the package insert for Revlimid before coming, I had to admit I was somewhat nervous about the possible side effect of DVT or Deep Vein Thrombosis. Warren said this was usually easily managed with low-dose aspirin. One issue was that sometimes therapy can cause issues with future Stem Cell Transplantation.

The second option was CyBorD – Cytoxin-Velcade-Decadron or cyclophosphamide-bortezomib-dexamethasone. The cyclophosphamide and dexamethasone are both oral tablets and the bortezomib could be given subcutaneously, inject just under the skin. Here, I would take the bortezomib on day 1, 4, 8 and 11, the dexamethosone on day 1, 2, 4, 5, 8, 9, 11, and 12, and the cyclophosphamide on day 1 and 8. This, together with a week off after would constitute 1 cycle and I would need 4 cycles or so before adjusting dosing. The primary side effect on this peripheral neuropathy.

Warren explained I should be able to tolerate either well. After further discussion, I thought that the CyBorD might be better for me. Warren said that he had had a lot of experience with this therapy and that it was one of his go-to therapies, especially for someone such as me with newly diagnosed Myeloma and being in early Stage I.

Warren also said I should be on bisphosphonate therapy as a once monthly injection of Zometa. Before I could do this, I needed a clearance from my dentist. Finally, I would also need io take acyclovir to protect against a shingles attack that can happen on bortezomib therapy.

We agreed that therapy would start Monday, 4/23. He also asked whether David had ordered a 24-hour urine collection test. I said that he had not and had said that he thought that it was not as necessary now with the excellent values that could be obtained via blood tests. Warren said that he disagreed and thought it was important to do this test too because it helps to set a baseline for future assessment. So I got a prescription for this test and for the remaining drugs I would need for therapy. Included in this was a prescription for prochlorperazine for nausea.

April 16, 2012

I met with Ghada first after the preliminaries. She looked at my records to see where I was in the progression of myeloma. She said I was clearly in Stage I. She explained what was involved in Autologous Stem Cell Transplantation.

First, one goes through a period of harvesting stem cells from one’s own blood. Sometimes drugs are given to enhance the creation of stem cells. After harvesting, these can be stored for later use, or used the following week.

The next part is rough. The patient is given high doses of melphalin, a potent anti-cancer drug, that virtually wipes out the marrow in an effort to destroy the myeloma cells. Then one is given one’s own stem cells back to repopulate the bone marrow and, hopefully return the marrow to a healthy status. All told, this can take 4 to 8 weeks of stay at Moffitt to complete this process.

While it’s nice to know that this is an option for me in the future, I have to say, I don’t look forward to the experience. I’m planning to get well enough to not need this!

I then met with José, another MD at Moffitt. While he did not go into the details of Stem Cell Transplantation, he did say that they now had the results of my FISH assessment and the results were good in that I had no chromosomal defect that would place me in a high risk group. He also said that the PET/CT and the Spinal MRI had shown that I was in good shape and clearly in early Stage I. He went on to say, that I was not sick enough for Stem Cell Transplantation now and that I could certainly be considered for this in the future. I asked about harvesting for future use and he explained that this was an option. He said some insurance plans did not pay for harvesting only, but most would pay for the complete process. José then thumped on my spine to see if he could detect any pain in the bones and also evaluated my movement capabilities with my right arm and shoulder.

Shortly before I left, Kelly who is an RN who works with Jose, gave me a Moffitt book on the Stem Cell Transplant process for me to fully understand what this was and what was involved. She also gave me her card and asked that I keep in touch. If I was going to have harvesting done, Moffitt will need about 3-months notice to set it up.

Kathleen and I drove home after having lunch at Jason’s Deli.

April 15, 2012

Today is the first Sunday after Easter.  Kathleen and I went to our usual 10:30 AM service.  After it was over, we drove up to Tampa for my appointments with the Moffitt Cancer Center the next day, 4/16.  We had a pleasant drive up and a very nice meal at Ocean Prime.

April 12, 2012

I met with Bob, the managing partner of the company I work for.

Bob explained that his wife, Chris, had been through cancer therapy about 10 years ago, and that he knew what I would be up against. He said that he was reducing my work load and assured me that I would not have to worry about my job and that I should concentrate on becoming fully healthy. He said I should work from home as much as needed until I felt both strong enough and well enough to come into the office. He lent me an iPad to use from home and when in various doctor’s waiting rooms saying it would be much easier to read and respond to email while I was waiting for my turn to come up. I thanked him for his understanding.

Later that day, I had the PET/CT scan and the Spinal MRI. The PET/CT is interesting in that they first want to make sure your blood sugar is not too high. I also had to have low carbohydrate meal the night before, and no carbs that morning at breakfast and nothing but water after 8:30 AM. After checking my sugar, I was injected with fluordeoxyglucose, and again I was radioactive. I then was made to relax for an hour to quiet muscular activity which can be misinterpreted in this test. The scan itself only took an hour and was quite easy to go through.

The Spinal MRI was another story. Each part of the spine, the cervical, thoracic and lumbar together with the complete pelvis take about 40 minutes on the MRI table. I then got injected with another contrast agent, gadolinium, and the major parts were checked again to compare one against the other without the contrast agent. All told I was 3-1/2 hours on the MRI table. I had a break to sit up for about 5 minutes and one restroom break. By the last 30 minutes or so, my back really hurt. I could not wait to get off that thing.

April 11, 2012

Kathleen and I both met with Warren, a second hematologist oncologist, for a second opinion on my therapy. Warren who is at the Lynn Cancer Center in Boca Raton came recommended by people I work with Steve and Tracy. Sandy, who was Steve’s wife and Tracy’s mom before she died a year ago, also had Myeloma and she was treated at the Lynn Cancer Institute. Both Steve and Tracy highly recommended this facility as they both thought Sandy had received most excellent care.

Warren had reviewed all the results of the testing completed up to this time. He said, although somewhat controversial, I should also have a PET/CT scan of my whole body and a complete Spinal MRI, top of head to and including the entire pelvis. He also asked whether a FISH evaluation had been done. According to Wikipedia:

FISH (fluorescencein situhybridization) is a cytogenetic technique developed by biomedical researchers in the early 1980s [1] that is used to detect and localize the presence or absence of specific DNAsequences on chromosomes.

I said that David had ordered this test and that the results were not back yet. He said that he wanted to see the results of these as well as the PET/CT and the Spinal MRI before recommending treatment. The PET/CT and Spinal MRI were both scheduled for 4/12.

April 9, 2012

I had another appointment with Neil and Margot.  She again worked on my shoulder and he worked on getting me properly aligned for future therapy.

April 8, 2012

Today is Easter Sunday.  The Lord is Risen Indeed, Alleluia!

Today Kathleen and I went to the sunrise service at the Chapel of St. Andrew – it started at 6:30 AM.  It was a wonderful service made especially so with the sun rising into the stained glass windows on either side of the altar.

April 5, 2012

I had a full body massage at another place today.  Very restful and full of what can only be described as the healing touch of someone who understands the ministry of massage therapy.

Tonight, Kathleen and I went to the Maunday Thursday service at Chapel of St. Andrew.  Very moving, especially in the foot washing in which most took part, both as giving and receiving.  After we all joined together for a simple meal of soup, bread and olives.