One man's experience with multiple myeloma

Tag: Kyprolis

September 20, 2015

Today is ASCT +705 days, and yes I know it’s been 2 full months since I last posted.  I’m sorry.

This week I will complete my 3rd cycle of Kyprolis on Monday and Tuesday.  So far, so good.

After my second cycle ended in August, my results have continued to come down.  My M-Spike is now 0.46 less than half its June value.  I am now in normal range of IgG, and my Free Light Chain ratio as also been coming down.  My last bone marrow biopsy in June showed total malignant cells at only 6% (less than 5% is considered a complete response if all other values are in their normal ranges.  In short then, I have a low grade disease which is well on its way to being a complete response once again.  This time, I’ll likely continue on a formal maintenance program, most likely (as I can see it now) taking Kyprolis on a reduced schedule.   More blood work next week to see how I have fared after this 3rd cycle.

Getting a needle inserted into one of my veins is becoming increasingly difficult.  I have communicated with Warren that perhaps a port will be better for me now.  It is likely that I’ll be on Kyprolis for some time, especially if I continue with it in a maintenance situation.  Ports, these days, are quire wonderful things and totally unlike the one I needed for my ASCT.  The kind of port I would get would be placed under the skin of my upper chest on one side.  To access it, a nurse feels for the septum under the skin and uses a special needed that goes through my skin and into the port through the septum.  Much less painful than sticking even a 24 gauge needle into a vein.  If I don’t use it for some time, it only needs to be flushed with heparin to insure it has not clogged, once a month.  I’ll get you details when this occurs.

Thank you for being patient with me.

Thank you, Lord Jesus, for my healing and for all the healing received by those for whom we pray.  Amen.

July 20, 2016

Today is ASCT + 643. 

I had my 4th course of therapy today, Kyprolis 35 mg and Decadron 10 mg. I blessed these meds for my use, praying that they reach every cancer cell and kill it. 

I’ll have my 5th and final course tomorrow of this therapy set. Yes, it’s normally 6, but I had to miss Tuesday last week to travel on business. 

So far all has been typical with side effects – lack of sleep on nights after infusions and water retention that goes away with lots of urinating on Thursday – Saturday when I return to my previous weight. 

Thank you, Lord Jesus, for my healing and for all the healing received by those for whom we pray. Amen

July 1, 2015

Today is ASCT + 623 days.  

I had my meeting with Warren today to get my results.  

The very good news is that my cytogenetics are unchanged.  In cytogenetic testing, my DNA is evaluated to see whether there any abnormalities that might cause me to be in a higher risk category – so no change is very good news.  Also the amount of abnormal cells in my bone marrow is only 6%.  If I recall correctly, my level 2 years ago was about 40%; so this is a huge improvement.  

Yes, my M-Spike (or abnormal protein level) is 1.01 (it should be not detected) and my free light chains and immunoglobulins are also up.  In a nutshell, I go back onto therapy.  Technically then, this is my third relapse overall and the first since my ASCT in October 2013.  I think I’m doing well.  

On Monday, July 6th, I will start Kyprolis (carfilzomib) and dexamethasone for 2 days (Monday and Tuesday) for three weeks and then have a week off.  Both drugs will be given by infusion over about 3 hours in the afternoon.  In the summer of 2013, I was on these medications, plus one other and I tolerated the regimen very well.  I expect the same this time.  

On July 29th, I will meet with Warren again for a fresh set of blood draws to see the effect of my therapy.  
Overall, l am quite upbeat about this.  As of today, there is no cure for myeloma.  The trick is then to keep me alive long enough for a true cure to come about.  In the meantime, there a several new therapies that I have not even tried yet.  So I have a lot of arrows in my quiver yet with which to continue the fight whenever it may happen that the therapy I start on Monday is no longer working.  

Thank you for your continuing support, prayers, and love.  

Thank you, Lord Jesus, for my healing and for all the healing received by those for whom I pray.  


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.