One man's experience with multiple myeloma


March 24, 2015

Today is ASCT +525 days since my transplant.

It has been 5 months since I last posted.  I meant to post in January and just never made it.

In January, I received the results of my latest set of blood tests and the only remarkable point was that my M-Spike was no longer “not detected” it had climbed to 0.2.  Of course, I’d have preferred that it was still not detected, but in and of itself, not a number to be worried about.

Today I received the results of my latest blood tests and it seems that there has been some progression.  My M-Spike is now 0.5 and my IgG has climbed to normal from below normal while my IgA and IgM dropped to below normal, and my Kappa Free Light Chains are now high as is the Kappa/Lambda ratio.

Warren has scheduled me for a skeletal MRI and a PET/CT scan for this Thursday afternoon to ensure that there is no bone damage going on.  It’s still too early to use the relapse word and we remain watchful.

I’ll let you know the results of the scans when I get the news.

In the meantime, I continue to pray for Bob, Carol, Wayne, Diane, Dianne, Ken, Darla, Pete, Sylvia, Nicola, Berris, Nancy, and Barbara.

Thank you, Lord Jesus, for my healing and the healing of those I pray for.

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 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.