Our Story

Big EZ is Ernie's nickname, and what he is lovingly called by many family members and friends. The nickname originally started out as "Big E" but gradually changed to "Big EZ"... and that's what stuck! We titled the blog "Walking with Big EZ" because that is what our family is doing through this trial...walking together! We hope you'll stop by often for updates and prayer requests so you can join us in walking with Big EZ.


Our journey began in the Fall of 2009 as EZ started to experience increasing back pain. After seeing a chiropractor and two different orthopedic specialists whose treatment plans did not bring relief, an MRI was done on January 4, 2010. On January 5th we were told that "abnormal cells" were detected, and to our complete shock, words like "lymphoma, leukemia and myeloma" were mentioned for the first time. On January 7th his employer let him go as a VP in a small company, telling him his services were no longer needed. A week later a biopsy was performed, and a plasmacytoma was detected on EZ's sacrum. We visited our oncologist the very next day to begin further testing to determine the extent of the myeloma. Multiple Myeloma was confirmed on January 29th, and so our three phase treatment plan began: Phase I - Induction Therapy, Phase II - Autologous Stem Cell Transplant, Phase III - Maintenance. 


1. The MRI on 1/4/10 revealed:
  • Large expansile soft tissue mass involving the sacrum with abnormal soft tissue extending along the sacral nerve roots into the inferior spinal canal to the level of L4-L5. Multilevel degenerative disc disease. (Another MRI from 3/20/10 revealed: partial compression deformities at L4 and L5, and altered bony architecture throughout the sacrum with extensive bony destruction.)
 2. His first Bone Marrow Biopsy Report and labwork from 1/20/10 revealed the following: 
  •     M-spike 2, WBC - 7.0, Hemoglobin- 12.0, Platelets - 200 K
  •     20-30% plasma cells, monoclonal IgA kappa plasma cell population
  •   Cytogenic studies revealed trisomy 3, but negative for both a deletion of RB1 on chromosome 13 and a deletion of TP35 on chromosome 17. 
3. A Bone Survey from 1/22/10 showed the following:
  • Multiple punched-out lesions involving the skull, bilateral humeri and left femur
EZ had the first of 12 radiation treatments to his sacrum on 1/26/10. A port was inserted on 2/4/10 and he had his first chemotherapy induction the next day; VTD - Velcade (short infusion), Thalidomide (100 mg capsule by mouth each evening) and Dexamethasone (five 4 mg tablets on Friday and Saturday morning only). Treatment was going very well until the plasmacytoma on his sacrum began to shrink to the point that the nerves to his legs went haywire and the pain was so bad on March 29th that he could not stand up. He was transported by ambulance to the hospital, was admitted, and found himself bedridden for 26 days, contracting pneumonia and a virus while there. An external pain pump was tried, but failed to relieve the episodic pain he experienced when trying to sit on the edge of the bed and then eventually stand. FINALLY, a young physical therapist on staff used a piece of equipment to winch him out of bed to a standing position. The sciatic pain down his legs was gone, but now he had to rebuild his strength and muscles after being immobile for so long. He was released on the 31st day of hospitalization, and transported home by ambulance since he still could not sit up due to the pressure put on the sacrum. It was a long and very difficult month away from home for both of us. While in the hospital an additional 10 radiation treatments were done to his sacrum and femoral neck, where another area of concern was found on a CT scan. He had a total of 22 radiation treatments and 23 weekly VTD treatments.

By the end of April, there was no detectable M-spike and home health physical therapy began to help EZ regain strength as he moved toward transplant. He went from a walker to a cane, and worked diligently to build up his endurance. 

The month of August was spent preparing for stem cell transplant with Dr. Cristina Gasparetto at the Duke Adult Bone Marrow Transplant Clinic. A Hickman catheter was inserted on August 5th and Cytoxan chemotherapy and mesna were given that same day at Duke. Neupogen injections at home began the next week, and 8 million healthy eells were harvested on August 17th. Melphalan chemotherapy was given on August 24th, and on August 25th he received his healthy stem cells back to begin again. HAPPY BIRTHDAY BIG EZ! After living in an apartment nearby the hospital for 17 days, he was discharged to go home on September 10th to continue his recuperation.

Our journey continued when a daily 10 mg. Revlimid capsule was introduced for maintenance. He
remains in Complete Response (CR) with no detectable M-spike. Praise the Lord!

2 comments:

  1. O my goodness Linda, after I left the last message on your current 3 year anniversary celebration post, I decided to re-read EZ's story! The similarities are just stunning between us and our families!!! EZ and I were diagnosed one month, one day apart; we are both IGA Myeloma; we have had very similar treatments! Fortunately for EZ, his myeloma was discovered at a much lower level than mine- Thank goodness for EZ!!! I had 67% myeloma plasma cells. Thank goodness his numbers are so much lower! And, I am so happy to see they still have him on Revlimid maintenance. I remained on Rev maintenance for a year and a half after my auto-stem-cell-transplant, and have been off it for over a year now... hence my guess myeloma came visiting again. I am going to request to go back on Rev maintenance at my next oncology appt in 2 weeks. Anyway, just can't get over all our family similarities Linda! I just love your beautiful blog with so much family love, warmth, and realness! You are such a beautiful person Linda, inside and out, and so is your home and all the delicious pictures you post!!! I feel blessed we met via our myeloma blogs!!! xoxo Julie

    ReplyDelete
    Replies
    1. The similarities are really stunning with your and Ernie. Perhaps because his plasmacytoma was in his sacrum, the pain was too much to push aside as we all have to sit, so he was diagnosed before those plasma cells got way out of control. He was not anemic, did not have excess calcium in his blood, and the protein in his urine wasn't out of control. But, his sacrum sure was very involved. He has tolerated Revlimid so much better than most, so both teams of doctors agreed he should stay on it till time of progression or until his numbers show his immune system is too compromised. Maintenance is one of those areas where doctors have their own beliefs about how long to do it. Dr. Gasparetto told us last week that the consensus in the US now, it to continue maintenance as long as possible. We are very thankful there are already new weapons to hit the MM with should relapse occur, as in your case.

      I too love your blog and the love, warmth and realness of your family! Oh what good times we could have if we lived closer! Thankful to "know" you, though I certainly wish the circumstances were different. Let's keep on encouraging one another! {hugs} Linda

      Delete