One man's experience with multiple myeloma


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.

June 13, 2015

Today is ASCT + 605

I updated my “About Page” to add the following:

New Note June 13, 2015:  I have changed the name of this blog from Karlsmyeloma to Karl&Myeloma in order to disown the myeloma that heretofore I had claimed as mine.  It is not mine; it is not from God.  It is the work of the devil and I do not own it and I reject it and I want it gone from my body.

Recent results show that I seem to be entering a relapse for the third time.  I have a bone marrow biopsy scheduled for this Wednesday, the 17th with Warren to see where I am definitively.

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

October 15, 2014

Today is ASCT + 365 – 1 year!

My transplant doc, Krishna, was ill and not able to make my appointment. Instead I met with Kate, one of his nurse practioners. I had some questions that she seemed to be able to answer well concerning my set of recent results. In short, I’m in remission! Praise be to God!

Whether I’ll be needing any other tests or what the schedule of follow up testing will be is to be determined. I meet with my regular hemotologist/oncologist, Warren, on Tuesday to start the process of working out a plan.

In the meantime, I feel great.

My only therapy post transplant has been curcumin phytosome which is curcumin complexed with phosphatidyl choline to make it bioavailable. It certainly is safe enough. I am happy to take this for the rest of my life if it means I don’t need chemo or transplant again.

This evening, I listed to a Cure Panel program on bone issues in myeloma. I learned that my experience of seeing my lytic lesions and plasma cytoma disappear in 6 months is rare. I can only attribute it to the power of prayer and God’s healing grace.

I’ll let you know more after my meeting with Warren.

My healing prayers go out for Wayne, Sylvia, Nicola, Ken, Joe, Berris, and Barbara.

Thank you, Lord Jesus, for my healing.


September 29, 2014

Today is ASCT +348.

“Immunofix Electr Int

No M-Spike!!

Wow!! Praise be to God!!

I have my meeting with my transplant doctor, Krishna on October 15th. Further explanation to come then. In the meantime, I am so happy!!

My only “therapy” since my ASCT has been curcumin phytosome, 1 capsule 2 times a day.

Thank you, Lord Jesus, for my healing.

I also pray for healing for Barbara, Wayne, Jean, Bob, Cricket, Marci, Mother Theodora, Sylvia, Nicola, Berris, Richard, Ken, Jean, Claire, and Vera.


September 20, 2014

Today is ASCT +339.

Got the results back of all the viral screening. All negative. So was the throat culture. No answer yet as to why I had a fever. Maritza suggested that I try Loratidine (Claritin) for the post nasal drip apparent cause of my sore throat. I’ve been on it 2 days, and while things seem to be loosening up some, I still have a sore throat, and a cough and a runny nose.

It was quite an impressive array of viruses that I was checked for: Metapneumovirus, Rhinovirus, Influenza A, Influenza A H1, Influenza A H3, Influenza B, Respiratory Snycytial Virus A, Respiratory Syncytial Virus B, Parainfluenza 1, Parainfluenza 2, Parainfluenza 3, and Adenovirus. The throat culture was for Group A Streptococcus.

The really good news that the Free Light Chain results came back and these are all normal. Thanks be to God! Still waiting for the M-Spike.

I’m praying for healing for Barbara, Wayne, Jean, Albert, Jean, Mother Theodora, Sylvia, Nicola, Ken, Herma, Berris, Bob, and Marci.

Thank you, Lord Jesus, for my healing.


September 16, 2014

Today is ASCT +335.

Today I was reminded that I am still a myeloma patient.

Somehow I seemed to have caught a bug of some kind (sore throat) while I traveled to MA for a wedding. When I arrived home I measured my temperature at 102.0 F. Being a transplant patient, I am under strict orders to report in any time I have a fever over 101.5 F.

So, last evening I reported these results to my doctor in an email asking whether I needed to see him or my GP. The answer was to see him because they have access to sophisticated viral screening tests that my GP would not have. So I made the trip to Miami.

In addition to all the myeloma tests that I was already scheduled to take tomorrow, they took samples from both arms to check for a blood infection, a throat culture to check for strep, and nasal swabs (very uncomfortable) and a nasal rinse to perform additional viral screenings.

I’m told I’ll have results in 2 days. Meanwhile, I’ve got a prescription for Tamiflu to reduce the severity of any flu I may have caught.

It’s been nice living in a world where all seemed to be normal. Oh well.

I’ll keep y’all posted as to results. In the mean time, I’m praying for healing for Barbara, Wayne, Jean, Albert, Jean, Mother Theodora, Sylvia, Nicola, Ken, Herma, Berris, Bob, and Marci.

Thank you, Lord Jesus, for my healing.


July 13, 2014

Today is ASCT + 270.

I have been feeling great since the last time I posted. Each week I seem to notice something that is better than it was before. For example, today I noticed that the veins in the back of my hands are seemingly back to normal. Hallelujah! Thanks be to God!

Cancer and it’s treatment are an intriguing thing to go through. Some parts of it take a long time to heal. Since y ASCT, the only ‘drug’ I’ve taken is Curcumin Phytosome (Meriva – Curcumin complexed with phosphatidyl choline – 2 capsules daily, one at night and one in the morning.

I’ve decided to wait for my next checkup on my numbers until I’m on Medicare starting in September. This way, I know all the blood tests are covered.

Thank you all for all your prayers – they have been working overtime. I couldn’t feel better.

Please also pray for Herma, Berris, Sylvia, Nicola, Ken, Wayne, Mother Theodora, Richard, Joe, and all those in the Boca Raton Multiple Myeloma Support Group.

Thank you Lord Jesus, for my healing.


April 29, 2014

Today is ASCT + 195. It is also my beloved Kathleen’s birthday!

Today is the day I’ve been waiting for. My six months post transplant results are where every myeloma patient wants them to be. You may recall that my monoclonal protein or M-Spike from 3 months ago was 0.07 g/dL or 0.26 g/dL depending on whether we were speaking of the new test method or the old method.

Well my new number according to the new method is 0.02 g/dL! Praise be to God! Hallelujah! It’s not 0, but it’s well on the way. I mentioned last time that my transplant doc, Krishna, said I should not expect 0 M-Spike post transplant – that it can take some months to get to 0. Well, clearly, I am on my way.

Most transplant patients start on consolidation therapy or maintenance therapy about 3 months post transplant. l did re-start my curcumin therapy about 1-1/2 months post transplant and that is what I have been on all this time since, 1 capsule 2 times per day of the Meriva version of curcumin.

I will be sending my results of my last testing off to James and to Warren for discussion. At the moment, my view is that the curcumin is doing the job and my druthers are to hold off on more aggressive therapy until such time (perhaps never?) as this may be needed.

Let’s see what they have to say. In the meantime, I feel great. My peripheral neuropathy is basically 0. My life seems almost normal except for the pincushion I became last Wednesday when I received no less than 6 immunizations to protect me since my transplant virtually wiped out this protection. I have more to come over the next 18 months.

Thank you, Lord Jesus, for my healing, and thank you for the healing received by those for whom we pray, Herma, Berris, Wayne, Ken, Joe, Vera, and Frank.


March 2, 2014

Today is +137 days since my transplant – about 4-1/2 months. It’s also Transfiguration Sunday.

It’s been a long time since I posted and I never did give you the results of my M-spike testing. My number was 0.26, which is about 11% of the value I had before I started the carfilzomib & doxorubicin liposomal.

I reviewed these numbers with Dr. Brian Durie at the IMF Patient and Family Seminar this past weekend in Boca Raton, FL. He said that this puts me at very good partial response. And I do need to go on maintenance therapy. He thought the idea of a carfilzomib maintenance made good sense. He suggested 1 dose every 2 weeks.

So I shall take this up with Krishna, James (Berenson) whom I will speak with later this month as well as James Hoffman (a myeloma specialist at Sylvester recommended by Krishna) and, of course, Warren.

All looks very good.

Thank you, Lord Jesus, for my healing and for those for whom we pray, Victor, Barbara, Herma, Berris, Frank, Richard, and Joe.