karl&myeloma

One man's experience with multiple myeloma

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.

Amen.

September 29, 2014

Today is ASCT +348.

“Immunofix Electr Int
Value: NO MONOCLONAL BAND DETECTED IN SERUM”

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.

Amen.

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.

Amen

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.

Amen.

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.

Amen.

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.

Amen

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.

Amen