One man's experience with multiple myeloma

Tag: Kyprolis

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.


July 19, 2013

Today is KDd-2-17. The last infusion for this cycle. I’ll have blood drawn next Wednesday afternoon to see how I’ve done in the second cycle. Then I’ll be away for about 10 days and will likely not post much during this period. At the latest, I’ll be able to post my results around 8/4 or 8/5.

I slept pretty well last night considering it was my big dexamethasone day. A friend at work, Gina, had recommended an aromatherapy, lavender oil, that helps to calm people, and help them sleep. While last night wasn’t perfect, it was way better than my last big dex day when I only slept for about 3-1/2 hours.

The infusion nurses have been having increasing trouble getting an infusion needle into veins over the last few infusion days. According to Paula, these two drugs, Kyprolis and Doxil are known to have some venous toxicity which can make it more difficult to get into a vein. I may have to think about a port.

I’ve also made an appointment with Dr. Krishna Komanduri of the Sylvester Cancer Center in Miami to discuss an Autologous Stem Cell Transplant on August 14th.

Thank you, Lord Jesus, for my healing.


July 10, 2013

Today is KDd-2-8.

I saw Warren again today, and he was quite pleased that I do not seem to be having any of the common side effects of any of the meds I am on, Kyprolis or Doxil. Naturally, dexamethasone will always be likely to have a negative effect on sleep. He OK’d my idea of taking the dex when I wake up in the night some time after midnight, which I almost always have to do. He mentioned that I did have a low garage fever (99.5) when the nurse took my vitals. While he was concerned, he knows that I will let him know if anything should develop. Just measured it now at 98.5, so it seems all is OK.

I also picked up my blood test results from the sample taken May 29th just before I started my new regimen that for some reason I had forgotten to pick up. I was worse than I had last reported:

IgG from 3395 to 2259 (normal max is 1618)
M-Spike from 2.3 to 1.6 (normal max is 0.0)

Yes, these are big reductions. The absolute amount of reductions may decrease (this is what happened when I was on CyBorD) but I certainly expect to see good reductions later this month when my next blood sample is taken on July 24th – results available early August.

Meanwhile my peripheral neuropathy still hovers around 5% to 10% of the worst levels I experienced last fall. Some days I don’t even notice it at all.

Tomorrow I go in for my third set of doses this cycle.

Thank you, Lord Jesus, for my healing.


July 5, 2013

Today is KDd-2-3.

I’m in the Lynn Cancer Center infusion room getting my second dose of Kyprolis at the 50 mg level which will be my standard level now that it has been established I have tolerated the 37 mg dose.

On Wednesday, I had forgotten to take the 16 mg of dexamethasone in the morning with breakfast as I was supposed to. I only realize it when the dexamethasone infusion was started Wednesday afternoon. So I decided to take my dose at the time I first woke up Wednesday night. That happened to be at 1:40 am Thursday morning. I managed to get back to sleep and slept until about 8 am that morning. Not straight through, but managed to get back to sleep each time. After 8 am, that was it, I was up for the day.

The local detonations of fireworks in our development was quite loud and frequent last night – until the rain started pretty heavily at about 10:30 pm – nature decided to take over.

I had another bout of hiccups Thursday evening that took me a while to control.

Thank you, Lord Jesus, for my healing.


July 2, 2013

Today is KDd-1-27. Tomorrow would normally have been KDd-1-28, but with the happening of Independence Day this week, Lynn Cancer Center will be closed on Thursday, so my cycle 2 infusions will start tomorrow, Wednesday afternoon and continue Friday morning.

As promised, I met with Warren this afternoon. He had good news for me. My M-spike is down to 1.6, and my IgG is down to 2259 – both major drops from my last measurements! Praise the Lord!

Warren would like me to move on an Autologous Stem Cell Transplant. I shall consider both Moffitt in Tampa and a Sylvester in Miami that is gaining in reputation.

More on all this to come. I start KDd cycle 2 tomorrow.

Thank you, Lord Jesus, for my healing.


June 20, 2013

Today is KDd-1-15.

Today I received the full treatment, Kyprolis, Doxil, Dexamethasone and saline. So far, so good, still. I am very thankful that I am tolerating this regimen quite well.

I met with Warren yesterday and we reviewed my CBC which while not all exactly in normal range, those that were not were close enough that he was not at all concerned.

I also my dermatologist today. He used the liquid nitrogen to freeze off 2 Actinic Keratoses. These are more commonly called pre-cancerous lesions. He says I’m good for six months. I’ll see him again in December.

Thank you, Lord Jesus, for my healing.