[Missing Paul]

Paul Cool - Diagnosed October, 2013, passed July 2016

by Missing Paul on Fri Sep 02, 2016 1:09 am

I know Paul followed this site. I know Paul posted here in the forum.

Paul Cool was diagnosed in late 2013 (October 27) and was supposedly a "good risk" - meaning he should survive 5 - 10 years. He stated with the Revlimid, Velcade, and dexamethasone (RVD) regimen in December, 2013, but had to go to cyclophosphamide, Velcade, and dexamethasone (CyBorD) as he started having organ failure.

He had an autologous stem cell transplant late October, 2014 at University of Maryland Hospital. Very good partial response / not remission. Cancer started creeping up in July 2015 and back to a Revlimid regimen ... gradually increasing to 20 mg with dex.

By March 29, 2016 Rev is at 20 mg + Empliciti, which works for only a little while. IgG up, blood counts and platelets down,

May 17, 2016 will try Kyprolis (carfilzomib) plus dex, and continue Revlimid. Mid June admit to hospital for 4.5 days. Blood clot left leg, M-spike shows a 65% increase, needs to be on blood thinners, has multiple blood transfusion and platelet transfusions, extreme back pain.

June 29 - Admit again to hospital. More transfusions (red blood and platelets). Tests show fractures t3, t5, t8, t11, l1, fractured sternum, fractured ribs both sides. The T3 fracture prevented him from holding his head upright. His chin was on his chest. The other fractures made traveling very painful.

Early July - More transfusions and platelets. Only last a couple days, then tired, confused, lethargic, more transfusions. Learn that there is a tumor in his hip, very large.

Mid July - Starting Darzalex (daratumumab) (still doing Revlimid), also radiation on hip starts, initially for 5 days, then for 10 days due to size of tumor.

July 19 - Doctor says multiple myeloma is out of control. July 21, 22, and 23, more transfusions of red blood cells and platelets. Still doing radiation.

Last chemo and radiation on July 26. After chemo, cannot stand, unable to talk. hospice. July 28, 2016, Paul passes away at 5:30 am

He was the love of my life, and suffered greatly. He never complained, was ever hopeful that he would have more time. He fought valiantly.

We didn't know what to expect. We were taken by surprise with how quickly the end came.

We have to find a cure for this horrible horrible disease.

Rest in peace, my darling.

[Boris Simkovich]

Re: Paul Cool - Diagnosed October, 2013, passed July 2016

by Boris Simkovich on Fri Sep 02, 2016 6:54 am

Thank you very much for letting us know about Paul. I am saddened to learn of his passing, and ask that you accept my sincerest condolences. I wish the best to you and all who knew Paul closely.

Not long after Paul started treatment with Empliciti, he reached out to us here at The Beacon, wanting to share his experience with the rest of the Beacon's readers. He knew that Empliciti is a relatively new treatment option for multiple myeloma patients, and thought it might help others to know about how he responded to the drug, and what sort of side effects occurred

We agreed that he would start posting about his treatment with the drug, and readers can find more about his experience, including a very detailed account of his prior treatment regimens, in this forum thread:

"My Empliciti (elotuzumab) treatment experience" (started Dec. 14, 2015)

I will miss Paul.

[Denise H]

Re: Paul Cool - Diagnosed October, 2013, passed July 2016

by Denise H on Tue Sep 06, 2016 1:58 pm

Another tragic reminder that, as much as some view this as a chronic, controllable disease, at least for some periods of time, it is a vicious, deadly force. So sorry for Paul's loved ones.

[Mark11]

Re: Paul Cool - Diagnosed October, 2013, passed July 2016

by Mark11 on Thu Sep 08, 2016 11:01 am

Condolences to Paul's family and friends. It is great that he contributed his treatment experiences for everyone.

Another tragic reminder that, as much as some view this as a chronic, controllable disease, at least for some periods of time, it is a vicious, deadly force.

I could not agree more, Denise. This disease takes way too many patients at a young age to be viewed as a chronic disease.