- The Myeloma Beacon - https://myelomabeacon.org -

Mohr’s Myeloma Musings: Shelf Life

By: Steve Mohr; Published: May 20, 2014 @ 12:13 pm | Comments Disabled

In my last column [1], I wrote about the decision-making process that led me to move forward with a stem cell transplant. I am now just three weeks away from my stem cell transplant, and I am going to share my pre­par­a­to­ry experiences for this next stage in my battle with multiple myeloma.

But before doing that, I would like to share a personal reflection.

I have found that during all the stages of my battle with myeloma – from an initial diagnosis of monoclonal gammopathy of undetermined sig­nif­i­cance (MGUS) that was quickly changed to multiple myeloma, through watchful waiting, initial treatment, and now a stem cell transplant – I fell into a state of being comfortable with my condition at each stage of my disease.

How do I explain becoming comfortable with progressing through the stages of a disease that is incurable?

I can't. But the fact remains that, at each stage of the progression, I became surprisingly accepting of my condition.

And each state of that complacency always ended up getting shattered by a reality check.

Each one of those reality checks indicates one thing: multiple myeloma is slowly but surely taking control of my life, and the tools we are using to wage this battle have a limited shelf life.

The latest reality check began early one morning two weeks ago when my schedule of pre-tests and con­sul­ta­tions for the stem cell transplant arrived by email: two full days of tests and con­sul­ta­tions. Later that day, a two hundred-page binder from the James Cancer Center arrived in the mail, giving detailed instructions on how to deal with every aspect of the stem cell procedure.

I remember half-jokingly saying to my wife that evening "I think this stem cell transplant might be a pretty big deal," knowing full well that it is a huge deal.

Our first day of appointments/consultations started early in the morning last Thursday with a financial coun­sel­or. She quickly informed us that everything went smoothly with the insurance company's pre-authorization procedure.

By Friday afternoon, I had undergone the following tests: a vein check with the Apheresis Department, work­up labs, an EKG, a bone marrow biopsy, an echocardiogram, an arterial blood gas test, a pulmonary func­tion test, and a myeloma skeletal survey.

These tests revealed that I am in good health (apart for having an incurable disease!), which did not surprise me.

Interestingly, the bone marrow biopsy was labeled as "Nurse Practitioner Procedure with Immediate Care Center" on the appointment calendar.  We thought that this would be a con­sul­ta­tion session that would discuss various procedures involving the nurse practitioner. Little did we know that the "Nurse Practitioner Procedure" was a code word for the bone marrow biopsy!

My blood pressure, which had just been checked at the previous test stop at 125/75, suddenly leapt to 157/95 when taken by the nurse in the Immediate Care Center. I was surprised about that reading because both of my previous bone narrow biopsies had been only minimally painful experiences.

However, my fears were unwarranted as I almost fell asleep during the procedure. At no time did I feel that sharp, radiating pain that one experiences as the sample is withdrawn. The nurse practitioner informed me that this was due to the fact that she was very generous in using local anesthetic lidocaine in numbing the entire area. I can only hope she is on duty when my next bone marrow biopsy is scheduled!

The pulmonary volume test was without question the most unusual test I have ever experienced. Blowing into a device in an enclosed capsule with the respiratory therapist yelling at me "Blow, blow, push, push" was not only unusual, but every bit as demanding physically as the dreaded bone marrow biopsy

In addition to the consultation with the financial coun­sel­or, we met with the bone marrow transplant co­or­di­nator, had an educational session with one of the nurses who worked on the transplant wing, met with a coun­sel­or, and had a final con­sul­ta­tion with my oncologist.

During that final consultation, the oncologist told me that my myeloma indicators had stopped the steady, six-month decline and had now plateaued in two consecutive test results. As a result, Revlimid [2] (lena­lido­mide), which I have been taking since last fall, will be replaced by a new agent if maintenance therapy is pursued post-transplant. What that new drug will be remains to be seen.

This bad news was offset somewhat by the fact that my treatment has been stopped for now and that I will not receive treatment for at least six months after the transplant. This may be overstating things, but seven months without chemo will seem like a new lease on life!

During previous appointments, my oncologist has been adamant about conveying to me that the key to quickening my post-transplant recovery will be for me to be as active as I can during my hospitalization. He really hammered this message home during our final meeting.

I can't express how valuable all these consultations/meetings were for both me and my wife. No matter how much one researches a procedure, the ability to ask questions of those who perform the procedures on a daily basis is far more insightful than what one might read, regardless of the source.

My stem cell transplant is scheduled for June 16. The harvesting of stem cells will take place on June 5 and 6. I am expected to be hospitalized for 16 days. I asked my doctor what the shortest stay was. He replied 11 days. My goal is to be released in 10!

I also asked him what the longest stay was. His response was "You don't want to know!” I quickly moved on to the next question!

Regardless of how long my hospitalization will be, the biggest concern I have now is how long after being released from the hospital it will take for me to return to a normal life.

Interestingly, my doctor informed me that there will be few if any restrictions for me once I’m released. He explained that there is no data that suggests that strictly limiting one's activities once the immune system has sufficiently recovered for a patient to be released from the hospital has any impact on the effectiveness of the transplant or in avoiding complications.

Earlier I used the term "shelf life" in referring to the tools we have at our disposal to battle this disease. The shelf life for watch and wait for me was about 16 months. Revlimid has been taken off the shelf after seven months. It remains to be seen how long I will benefit from a stem cell transplant.

Upon reflection, it seems that proceeding with the transplant was a sound decision in light of the fact that Revlimid is no longer an effective agent for me in achieving remission.

Time will tell, but I am comfortable with where I am heading, and I look forward to sharing my experiences with the stem cell transplant in future columns.

Steve Mohr is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here [3].

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .


Article printed from The Myeloma Beacon: https://myelomabeacon.org

URL to article: https://myelomabeacon.org/headline/2014/05/20/mohrs-myeloma-musings-shelf-life/

URLs in this post:

[1] column: https://myelomabeacon.org/headline/2014/04/17/mohrs-myeloma-musings-plant-your-feet-and-stand-firm/

[2] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/

[3] here: https://myelomabeacon.org/author/mohr-steve/

Copyright © The Beacon Foundation for Health. All rights reserved.