One man's experience with multiple myeloma

Tag: Doxil

September 29, 2013

Today is waiting day 3.

I’ve been advised that I will not be able to start the ASCT this coming week. Also, they only start myeloma patients on Mondays, Tuesdays and Wednesdays. They also want to flush my catheter lines 3 times this week to insure all remain in good working order.

Time to get to some data that I received on Friday that I have been remiss in not providing.

After 3-2/3 cycles of KDd: my M-Spike is down to 0.4, my IgG is now actually below normal (which is OK), my Free Kappa light chains are now at 2.2 (desired range 0.33-1.94), and my total Kappa Light Chains are in the normal range, my total Lambda Light Chains remain low and these may need to come up.

Thank you, Lord Jesus, for my healing.


September 26, 2013

Today is Neupogen day 5, and I am very happy to report, it is the last in this course of therapy.

Today was my apheresis day. Please notice that I used the past tense and the singular. If you recall, I was scheduled for two days of apheresis because this is what is usually required to harvest (collect) 5 million stem cells as a minimum; with 10 million being the goal that the doctors prefer their patients to have collected.

Well [drum roll please] at the mid-point of the scheduled total collection time of 6 hours, a sample of my stem cells collected thus far was taken, and when the results came back, I was at 16.1 million cells collected!!

Praise be to God!

It had taken the lab about 1-1/2 hours to complete their analysis, and then as you might imagine, the doctor monitoring me and results, said “Double check them please”. By the time that could all be completed, a total of 2 hours post mid-point sampling had gone by before they could be sure that all was good, and that I could be disconnected, and not have to come in for a second day. My rough estimate is that there should be in excess of 25 million cells collected.

I wish to thank the talented team of nurses at the Sylvester Comprehensive Cancer Center Apheresis Department, Marcia, Jesus, and Monica, for their most excellent care. In the time I was there I learned a lot about how the collecting machine works and the various safeguards built in to the whole process.

Tomorrow I will get the exact count and perhaps some idea as to when the actual transplant phase might start.

Thank you, Lord Jesus, for my healing.


September 25, 2013

Today is Neupogen day 4, and venous catheter insertion day, and Plerixofor day 1. A busy day!

This is what the central venous catheter looks like after all is said and done:


I had the Neupogen shot at about 9:00 this morning. At 11:30, Kathleen and drove down to Sylvester for the catheter insertion. Around 1PM, they inserted an IV line for various meds including those they used to put me in twilight. I woke up with a dull pain in my neck from the original incision point for the catheter. While I was a little delayed starting the procedure, it was no big deal because I had to hang around for the Plerixofor shot. (I’m starting to feel like a pincushion.).

Anyway, the 3 brightly colored ends you see in the photo are what they use during apheresis to take blood out to collect my stem cells, and another gets used to give me the rest of my blood back after the stem cells are collected. I think the third is used in the event of some kind of other need, such as a need to give me a med while the apheresis is going on.

So, so far so good. I am tolerating this whole adventure just fine.

Thank you all so much for you thoughts and prayers. They are working!

Thank you, Lord Jesus, for my healing.


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September 24, 2013

Today is Neupogen day 3.

I had my third Neupogen shot this morning at 9 AM. I have started to feel occasional pains in my spine that I believe are due to the Neupogen. Most of the time I notice no pains, but some times they are acute pulses that last for up to a minute. I will take acetaminophen if I need it, but so far, I really cannot say that I have.

Tomorrow morning is another Neupogen shot, and I get the central venous catheter installed at 2 PM at Sylvester.

Thank you, Lord Jesus, for my healing.


September 22, 2013

Today is Neupogen day 1.

This morning Kathleen and I drove to Miami so I could get my first Neupogen injection. It is given subcutaneously, and stings some during the injection. Since this was my first experience with Neupogen, the nurse, Vibeka, asked that I stay for a half-hour to make sure there were no immediate side effects. There was also another blood draw because there was apparently some confusion over the proper form required to test for infectious disease markers. That was quickly resolved this morning so the test will be run.

After that, Kathleen and I drove up to Boca Raton to attend our usual Sunday service. A little shopping on the way home and a small nap and all is good. No untoward effects.

Thank you, Lord Jesus, for my healing.


September 18, 2013

Today is KDd 4-14. Tomorrow, I was originally scheduled to have my 5th dose of Kyprolis and my third dose of Doxil together with the dreaded 16 mg of dexamethasone.

Instead, today I had my consent meeting at Sylvester Comprehensive Cancer Center in Miami with Krishna Komanduri. He carefully explained the informed consent that I did sign for the Autologous Stem Cell Transplant.

This ASCT process will start on Sunday, 9/22 with my first Neupogen injection. This drug is also known as filgrastim or G-CSF, or Granulocyte Colony Stimulating Factor. It’s primary purpose is to stimulate the production of extra blood stem cells in the marrow so that these may be more easily collected during the aphoresis collection process. We want as many as we can get because these are the cells I get back after the high dose chemo.

As for me, right now I’m feeling great. Kathleen and I went out to dinner after our meeting in Miami to one of our favorite restaurants, The Sea Watch. We learned that all bottles of wine are 50% off on Wednesday evenings. So we had a nice Napa Chardonnay with Kathleen’s shrimp and my scallops.

Thank you, Lord Jesus, for my healing.


September 11, 2013

Today is KDd 4-7. It is also the anniversary of the attacks of 9/11/2011. Let us all remember those who died and those who lost loved ones on that terrifying day. Deliver them from their pain and suffering, O God, and provide them with the knowledge of your peace and grace, through Jesus Christ, our Lord, and the power of the Holy Spirit. Amen.

Today I met with a psychologist and a psychiatrist at the Sylvester Comprehensive Cancer Center, SCCC, as a requirement by my insurance company to insure that I am mentally prepared for this procedure. I’m glad to say that I fooled them completely, 😉

It seems that my short term memory is still quite good and that I do have an accurate understanding of what a transplant is about, the risks and the possible rewards. I also have a superb support system, mostly in the name of Kathleen, and also in so many other friends and family that I truly feel very relaxed and confident about this upcoming procedure.

Thank you, Lord Jesus, for my healing.


September 10, 2013

Today is KDd 4-6.

Yesterday was a day spent in preparation for my ASCT. In the morning, I paid a visit to my dentist, Mark, so that the hygienist could give me a good cleaning so that I can have as healthy a mouth as possible for my transplant.

Later in the afternoon I had a MUGA scan

from Wikipedia: (Multi Gated Acquisition Scan) is a time-proven nuclear medicine test designed to evaluate the function of the right and left ventricles of the heart, thus allowing informed diagnostic intervention in heart failure. It is also called radionuclide angiography, radionuclide ventriculography, or gated blood pool imaging, as well as SYMA (SYnchronized Multigated Acquisition) scan. This modality uniquely provides a cine image of the beating heart, and allows the interpreter to determine the efficiency of the individual heart valves and chambers. MUGA/Cine scanning represents a robust adjunct to the now more common echocardiogram. Mathematics regarding acquisition of Q is well served by both of these methods as well as other inexpensive models supporting ejection fraction as a product of the heart/myocardium in systole.

and a Pulmonary Function Test. These are required before a transplant so my doctors can be confident that both my heart and lungs are sufficiently strong for me to withstand the transplant process.

Thank you, Lord Jesus, for my healing.


September 3, 2013

Today is KDd 3-27. I have not had any therapy since August 23rd, which is normal for this regimen. I start KDd 4 on the 5th this week.

Most important is that I got the results from my blood sample taken last Wednesday morning, August 28th when I met with Warren today. He was very happy with my results.

My M-Spike has continued to drop to 0.5 from 0.8 last month. This may not seem like a big drop as the last 2 measurements, but under the CyBorD regimen, once I hit less than than 1.0, it would only drop 0.1 each month. So this is a big drop in comparison to my previous therapy.

My IgG continued to drop in the normal range to 798 from 1086.

While not measured since I was restaged in May, my Kappa Free Light Chains have dropped from over 1,000 to 25.1 (normal is 3.3 -19.1). So this was a huge drop!

Praise The Lord!!

As I mentioned, I start my next cycle of KDd 4 in two days. This one will be shortened to only 4 dosing days because Krishna has asked that I discontinue any therapy by September 15th so there will not be any interference with the start of my Stem Cell Transplant process later this month. Much more on that to come.

Thank you, Lord Jesus, for my healing!