One man's experience with multiple myeloma

July 6, 2015

Today is ASCT + 629 days. 

Today I had my first infusion since August of 2013. The drugs were Kyprolis (carfilzomib) 37 mg and Decadron (dexamethasone) 10 mg. This started about 2:30 pm and ended an hour later. At the suggestion of Fr. Nigel Mumford, a person well known in healing circles, I prayed over the drugs given to me with a prayer I wrote:  

Bless, O Lord this medicine for my use, and me to your loving service. May this medicine enter my body and do all the things it is supposed to do and not cause any unwanted side effects. May it reach every single cancerous cell in my body and kill it. I pray also that you, Lord Jesus, the great physician, replace all those killed cells, with new healthy cells, and restore me to the person you intended me to be. Thank you, Lord Jesus. Amen

I used it with each of the two drugs I received. There is no doubt in my mind that healing is going on. After I had been hooked up to the IV, the nurse took my vitals and my blood pressure was 105/57!  Another nurse said that I must be a really cool customer. 

This is how it goes when we have full confidence and trust in our Heavenly Father. 

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


June 17, 2015

Today is ASCT + 609.  

I had my my bone marrow biopsy this afternoon done by Warren. I seemed to be more sensitive than last time which Warren noted. 

My next meeting with him will be on July 1st to review the results and to discuss what my optimal therapy will be.  

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

Below is a photo of the samples taken. Don’t look if you are a little squeamish.   



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.

March 24, 2015

Today is ASCT +525 days since my transplant.

It has been 5 months since I last posted.  I meant to post in January and just never made it.

In January, I received the results of my latest set of blood tests and the only remarkable point was that my M-Spike was no longer “not detected” it had climbed to 0.2.  Of course, I’d have preferred that it was still not detected, but in and of itself, not a number to be worried about.

Today I received the results of my latest blood tests and it seems that there has been some progression.  My M-Spike is now 0.5 and my IgG has climbed to normal from below normal while my IgA and IgM dropped to below normal, and my Kappa Free Light Chains are now high as is the Kappa/Lambda ratio.

Warren has scheduled me for a skeletal MRI and a PET/CT scan for this Thursday afternoon to ensure that there is no bone damage going on.  It’s still too early to use the relapse word and we remain watchful.

I’ll let you know the results of the scans when I get the news.

In the meantime, I continue to pray for Bob, Carol, Wayne, Diane, Dianne, Ken, Darla, Pete, Sylvia, Nicola, Berris, Nancy, and Barbara.

Thank you, Lord Jesus, for my healing and the healing of those I pray for.

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 19, 2014

Today is ASCT + 276.

As I lay in bed trying to fall back to sleep, I find myself thinking about the nature of healing. Why is it that some of seem to receive healing and others not? Surely, in my own case, it is only through the grace of God that I am where I am.

I read, with a yearning to help, another myeloma blogger (ejbones) who lives in London, who is very young, only in her 30’s, who is going through so much. She has been through ASCT, complete remission, and relapse all in less than a year, and is again going through a cocktail of therapies. I have been considering how to comment to her.

How do I reach her without being preachy? Who am I to understand how she feels when she is so young with this disease? It seems her depression is totally understandable. Someone at her age should be enjoying life without having this beast weighing her down.

EJ, I pray that the peace of God may uphold you and lift you up from all the negative places you have been, and that the grace of God fill you up with healing and give you strength to go on in your therapy, and that your meds reach every cancerous cell and destroy them, and that God replace every cancerous cell with new, healthy cells, so that you may experience life as God means for you to experience life, through our Lord Jesus Christ and the power of the Holy Spirit, Amen.

Thank you, Lord Jesus, for my healing.