One man's experience with multiple myeloma


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.