One man's experience with multiple myeloma

May 8, 2019

Since August of 2017, Warren has put me on Daratumumab (Darzalex) and Pomalidomide (Pomalyst).

Daratumumab is a monoclonal antibody (Wikipedia – technical with useful bits) that is given by infusion and starts out in weekly dosing. After 8 weeks, dosing goes to biweekly, and after 6 months to monthly which is considered a maintenance dose. I have successfully moved to the maintenance dose.

Pomalidomide is an immunomodulatory drug that is a relative of thalidomide (the oldest member of the family) and lenolidomide (“son of thalidomide”) and may be considered to be the “son of lenolidomide”. This drug is dosed 1 capsule per day for 21 days followed by 7 days off which adds up to 1 cycle. Four strengths are available, 4mg, 3mg, 2mg, and 1mg. I started at the 4mg level and quickly moved to 3mg due to allergic reactions (severe itching) and then a couple months later to 2mg and later to the 1mg dose because of severe fatigue. Later on I moved to the 1mg dose also due to fatigue. Finally, Warren put me on 1mg every other day and now, I am trying things without the drug at all. So far, my energy levels are improving, but it takes a month to totally clear the drug from the body.

Still taking the dexamethasone (Decagon) when I get my monthly daratumumab infusion.

With glory and praise to God, Father, Son, and Holy Spirit, for all the healing and care I receive.

August 30, 2017

(I just noticed that this posting was never published and much has happened since then. I’ll update.)

Again, it has been way too long since I last posted and there has been much water under the bridge.

Returning to the original dose of the Kyprolis helped with the side effects for a while. However about 4 months ago, my numbers started to climb and Warren thought it wise to add another drug to my regimen – Cytoxan or cyclophosphamide – 500 mg once a week on the first day of Kyprolis dosing.

September 19, 2017

I’ve been on the combo of Darzalex (daratumumab) a monoclonal antibody given by infusion and Pomalyst (pomalidomide) an immidazole inhibitor taken orally, for about 5 weeks now. My usual panel of myeloma tests were taken on September 5 and I got the results today.

Wow!! My M-spike has dropped to 0.0 – still measurable so not “none detected” which is the goal. I should get there at the next testing. Praise God! My body has responded really well and quickly to this new regimen.

With God’s healing peace,

March 13, 2017

Well, it has now been almost five months since I last wrote.  At least it’s not a year like last time!  Still a lot has happened in these 5 months.

The first thing to note is that this coming March 23rd will be the fifth anniversary of my diagnosis with myeloma.  Five years ago, upon learning of this diagnosis, I naturally spent some time on Wikipedia looking this up.  I wasn’t happy to see that the average life expectancy was only three years.  I am happy to report that that number is now considerably higher at 10 years and getting longer every year.  There remain five therapies that I still have not tried:   pomalidomide (Pomalyst), daratumumab (Darzalex), ixazomib (Ninlaro), panobinostat (Farydak), and elotuzumab (Empliciti).  There are also multiple clinical trials testing other agents, that have been approved for other cancers, to see how well they may work in myeloma.

Over the last couple of months, my numbers have been creeping higher – most recently at 1.14 as of February 13th.  Warren, Kathleen, and I reviewed the situation and decided that I would return to the original dose level of the carfilzomib (Kyprolis) over the three week cycle and one week off.  And, since my last PET/CT was on March 26, 2015, Warren thought it would be useful to have another to confirm that no skeletal involvement had started up again with my uptick in numbers.  I have very happy to report that the PET/CT was clear!

I am still walking regularly with Kathleen and I have been able to keep a pretty steady schedule of about 7 miles a week (over 3 days) at an average speed of about 3.1 to 3.2 miles per hour.

My next myeloma series samples will be taken later today and we’ll see how things are going when I meet with Warren next week.  In most any event, (unless things go crazy high) I’ll remain on this therapy for a while still.  Warren has told me that he has some patients who have been on carfilzomib for over two years.

This weekend, Kathleen and I are attending the International Myeloma Foundation Patient and Family Seminar in Boca Raton, FL.  We will be most interested to hear what is coming next for therapies.

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


October 12, 2016

Wow!!  I have been remiss.  

The port has continued to work well over the past year.  I am still on Kyprolis (carfilzomib) although the dose and regimen has changed last March.  Instead of a normal dose taken for 2 days a week for 3 weeks followed by a week off, I am now on a double strength dose for two days every other week.  This works better for my travel schedule.  

My numbers, especially M-Spike have hovered between 0.3 and 0.8 for this entire year.  I don’t see that I’ll be stopping therapy anytime soon.  But at least the myeloma is in good control.  Side effects are more harsh with this extra strength therapy.  I get a fever sometime during the night following the first day (of 2) therapy.  It is usually gone by the time I get my next dose. I tried discontinuing the dexamethasone because I was complaining of headaches and Warren said we could try it for a while and see what happened.  Then I was diagnosed with TMJ (TemproMandibular Joint) which was causing the headaches and other issues.  (I got a Mouth Guard from my dentist and the symptoms seem to have disappeared.)  

So, Warren and I decided that perhaps I should add the dexamethasone back in and see how I fared.  I am happy to report that my issues with nausea have decreased and my sleep situation is about the same.  So now, I only take the dexamethasone on the first of the two days of treatment.  

Warren has also told me that he has patients who have been on Kyprolis for over 2 years.  It seems there is precedent for the direction I seem to be heading in.  

I hope that my next communication will not take as long as another year.  But if it does, I would hope that it would only mean that things have been puttering along in similar fashion to this last year.  

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

October 24, 2015

Today is ASCT + 739 days (or 2-years and 9-days)

I had a port inserted on October 7th, and then left for Madrid on a business trip on the 11th returning on the 16th – my second ‘birthday’ since receiving my transplanted stem cells.

The reason for the port is that, for me – and others from what I understand from the infusion nurses at Lynn – is that Kyprolis (carfilzomib) is toxic to the veins that circulate this drug to the myeloma cells.  What apparently happens is that upon being successfully punctured by the needle for a current infusion, somehow the wall of the vein is not strong enough to hold the flexible tube left behind upon the needle removal, and the infusion tube slips out of place.  Since it was becoming increasingly difficult to find a vein in either arm to successfully infuse my next dose, it seemed the port was the best way to go.  Both for my own comfort and for work of the infusion nurses.

Here is a drawing of what this port looks like:

Port placement

All of what you see is actually placed below the skin.  And the ‘purple’ part, the port, becomes a raised ‘bump’ under the skin.  The tubing leads to a large vein (the jugular) where the tube continues down into the heart.

In use, it’s really quite simple, the infusion nurse uses a specially designed needle that punctures my skin and the septum of the port simultaneously allowing both the taking of blood samples and the infusion of medicine.  The infusion nurses were almost ecstatic on Monday when they learned I had the port and that their work would be so much easier for them AND for me.

I am in the fourth cycle of Kyprolis now, finishing next week.   The last cycle that ended September 22 had results for everything in range but the M-Spike which continues its downward trend and is now at 0.35 (the goal is “not detected”).

The next sampling for this testing takes place on November 6 and I expect to start the fifth cycle on November 9.

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

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 13, 2015

Today is ASCT + 636. 

I had my third infusion of this current round of Kyprolis (carfilzomib) and Decadron (dexamethasone) this afternoon. Besides sleeplessness, it seems that I also retained a lot of water from the steroid, about 4 pounds, which I lost last Friday & Saturday. Wow!  

I travel tomorrow and my next dosing is the 20th. 

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

July 7, 2015

Today is ASCT +630

Today I had my second dose of Kyprolis and Decadron. 

No ill effects at all other than sleeplessness from 2 am on – typical of the Decadron. 

If you are interested in some of my personal theology, please take a look at the 4 comments to my posting of July 6. 

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