One man's experience with multiple myeloma

Tag: Alternative Therapy

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!


August 16, 2013

Today is KDd 3-9. It’s also the day that my upper left first molar had to come out.

But first let’s talk about my meeting on Wednesday at the Sylvester Comprehensive Cancer Center at the University of Miami in Miami, FL. I met with Dr. Krishna Komanduri who is the Director of the Adult Stem Cell Transplant Center at Sylvester. He was most recently with a similar facility at M. D. Anderson in Houston TX.

I was there to speak with him about an Autogolous Stem Cell Transplant (ASCT). He reviewed my history and strongly urged me to go ahead, pointing out that not only do I stand a good chance of going into remission for several years, and also it gives my poor body a rest from regular, full dose chemo treatments. It is likely that I will need a maintenance therapy of some kind, to be determined later. So, I’ve signed up.

The process will begin on 9/17 with a formal consent meeting with Krishna, his team, and Kathleen – to make sure that all her questions get answered. On 9/22, they will start injections of Neupogen, which stimulates the marrow to release lots of stem cells. These will continue for the next 2 days. On Wednesday, 9/25, I’ll get the Venous Catheter installed. This device will permit easy extraction of my stem cells and provide a location to introduce the high potency chemo that will kill off my bone marrow and the myeloma cells along with it. The collateral damage is that my immune system is destroyed which leaves me open to about any infection that might come my way. Finally, the catheter will provide a place for me to receive my stem cells back, that will have been frozen to keep them fresh.

My stem cells will be extracted in a process called aphoresis on 9/26 and 9/27. I will then be hospitalized and given the high dose chemo (yes my hair, what’s left of it) will fall out. A day or so later I will get my stem cells back which will engraft back into my marrow and start producing only healthy blood cells. As soon as the engraftment is sufficiently complete, I’ll be discharged. This could be after as short as 2 weeks!

Since the tooth in question was abscessed, I needed to have it come out now so that my dentist, Mark, can certify to Krishna that I have no dental infections, which would place me at danger following the destruction of my immune system.

Depending on how I feel, Kathleen may take over the writing of my blog to keep you all informed during this procedure.

The Holy Spirit has finally convinced me that I need to listen to my medical advisors and accept this treatment, and to not be afraid of the 1% chance of death. This will be one time when I’ll not be hoping to win the lottery 😉 Krishna was quick to point out that Sylvester has not lost a patient yet in the three years they have been doing this.

Thank you, Lord Jesus, for my healing.


August 7, 2013

Today is KDd-3 minus 1. Minus 1 because I had two weeks off from therapy instead of the usual one and I start my third cycle tomorrow.

It’s hard to know what to write about first so let’s start with my new numbers that I just got today.

My IgG has dropped from a high of 3395 2 months ago (2259 1 month ago) to an in-normal range of 1086 (normal is 694-1618)! WOW!

My M-spike has dropped from a high of 2.3 2 months ago (1.6 1 month ago) to a 50% drop of 0.8 (normal is none detected)! DOUBLE WOW!!

Praise the Lord!

This regimen of Kyprolis (carfilzomib) and Doxil (doxorubicin liposomal) plus low dose dexamethasone really kicks myeloma butt! These reductions are much more dramatic than the reductions I obtained under CyBorD last year. Note that my dose of Doxil is 1/3 the normal dose each time I receive it, but I get 3 doses over 3 weeks instead of one full dose once a month.

Over the last 2 weeks, I’ve also been able to go on a 3-mile hike that had a fair amount of repeated up and down; yes, I was winded but did complete the hike. On another day I went on a walk that ended up at 3.5 miles. Many thanks to my wife Kathleen and our friends Fern and Anne who made sure I was OK throughout.

Next week, I have an appointment with Dr. Krishna Komanduri of the Sylvester Comprehensive Cancer Center at the University of Miami to talk about Autologous Stem Cell Transplant (ASCT). I’ll fill you in after the meeting. Krishna is most recently from the MD Anderson facility in Houston and he heads up the Transplant team at Sylvester.

Lastly, Warren has recommended that I consider a port because the nurses (who have also suggested it) have had some difficulties finding a proper vein to stick and suggested I could get some more information from the infusion nurses tomorrow afternoon when I start my 3rd cycle of KDd.

Thank you, Lord Jesus, for my healing.