Dad had kept track of all of his treatment regimens in hopes of helping other Mantle Cell Lymphoma (MCL) patients understand their treatment options. I copy/pasted his documentation faithfully, although adding emphasis and links where appropriate and fixing the formatting. Anything in [brackets] was added by me for potential clarification.
Chemo Regimens for my Mantle Cell Lymphoma
* * * * * * * * * * * * * * * * * * * * *
Week #1 – The following as accurate as possible. Doing it from memory. Look for paperwork for supporting evidence?
09/24/10 – At ~7:25 PM at end of lunch, had something sticking in my throat, feeling like it might choke me. Lasted a couple of minutes. Told Scott in case it happened again and I needed paramedics. Didn’t. Told Debbie about the incident when I got home.
09/25/10 – At ~6:30 AM, it happened again while in bed. Debbie took me to Medicall Urgent Care. Doctor Hermann H.? saw me about 7:00 AM, and had nurse make a 9:00AM appointment for me with Dr. DeVito at Stuyvesant Plaza in Albany that very morning. He told us I had a large [tumor] ? on my right tonsil which needed to be removed. He had surgical time for October 5. 2010 at Samaritan Hospital in Troy ~8:30AM(?). We took it. The operation was only supposed to take about 30 minutes, but ended up taking much longer.
10/05/10 – The operation was only supposed to take about 30 minutes, but ended up taking much longer.
10/??/10 – Follow-up with Dr. Michael DeVito. He told us that I was typed by the Mayo Clinic with Mantle Cell Lymphoma. He offered to have his staff contact an oncologist for us. Suggested NYOH in Latham, but I asked about the Rexford office. They suggested Dr. John DelMonte. We asked them to schedule a consultation for us.
11/15/10 – ?
Regimen #1 – RCHOP – NYOH Rexford except for the last, which was done at NYOH AMC prior to Regimen #2
Regimen #2 – Stem Cell Transplant – NYOH AMC (outpatient basis)
03/28/11 – ?
Regimen #4 – Velcade – NYOH Rexford – Four cycles planned. Once a week for four weeks, two weeks off, start again
02/??/14 – Session #1
02/??/14 – Session #2
02/??/14 – Session #3 – White blood count low, but OK to do shot.
03/01/14 – Session #4 didn’t happen! White blood count 1300- critically low. Take two weeks and check on 03/14/14
03/14/14 – Follow-up with Dr. Silvers to determine if staying on Velcade – NO ! – Radiation/Ibrutinib
03/17/14 – Chemo class @3:00 PM with Kristen Williams(?). After class she placed order for Ibrutinib with Diplomat.
03/18/14 – PET scan at NYOH AMC @11:45AM ~ 2:10PM
03/19/14 – Diplomat Pharmacy called to schedule delivery of Ibrutinib. CDPHP approved with $60 co-pay. Diplomat asked permission to call CDPHP to see if they could reduce the co-pay. Called back to tell us that the pharmaceutical manufacturer was kicking in funds, reducing our co-pay to $25.
03/20/14 – Scheduled for radiation consultation/simulation with * Dr. DeJesus; rescheduled by them for Friday ~8:55AM
03/20/14 – Called triage nurse (Kristen), neck pain at tumor site. Dr. Silvers had us come in at 12:45PM. Met with us almost immediately. Had nurse (Stephanie) start me on 20ml(?) liquid dexamethasone, morphine, potassium and hydration. Also met with Dr. DeJesus for consultation and simulation/prep for Monday.
03/20/14 – UPS dropped off 30 day supply of Ibrutinib ~2:05 PM.
03/21/14 – ~1:30PM nurse (Stephanie) started me on 10ml liquid dexamethasone, potassium, stomach medication (vomited after having a V8) and hydration. Can’t take the Ibrutinib yet as my tonsils are touching and my throat is closed up too much to even swallow my omeprazole capsule, which is the same size as each of the four Ibrutinib capsules I need to take each day! May have to wait until radiation relieves throat problem.
Week #3 Monday – Friday
03/24/14 – Nothing this week?? Meet with Dr. Silvers??
Week #4 (Week #1 of radiation) Monday – Friday
03/31/14 – Scheduled for radiation at 4:00 PM (Radiation only for neck/throat tumors, not abdominal or others)
04/01/14 – Scheduled for radiation at 4:00 PM (Need to take Ibrutinib for complete treatment!)
04/02/14 – Scheduled for radiation at 4:00 PM
04/03/14 – Scheduled for radiation at 4:00 PM
04/04/14 – Scheduled for Dr. Silvers at 1:15 PM
04/04/14 – Scheduled for radiation at 4:00 PM (Was able to be fit in about 2 PM)
Week #5 (Week #2 of radiation; able to swallow Ibrutinib due to radiation reducing size of nodes in neck/throat area)
04/07/14 – Started my Ibrutinib at 9:00 AM this morning, took regular medicine at 10 AM; Radiation at 4:00 PM
04/08/14 – Had taken Morphine during the night due to back pain from abdominal nodes(?). A little before 9 AM I had a sharp pain in my left side. Seemed to be gas. Took my first Ibrutinib capsule and vomited it up with clear liquid. Called NYOH triage. Kristen called back; said to take a Zofran, wait an hour and take the remaining three Ibrutinib. This worked.
04/09/14 – Didn’t take Morphine [until?] after 10 PM last night. Took Zofran, too, but it seemed to stick in my throat for a couple of hours. Used Aspercreme for back pain. Took Compazine tablet at ~8:15 AM. Took all four Ibrutinib with water at 9 AM. No nausea or vomiting.
04/11/14 – Doctor visit at 1:30 PM. Looking good, next visit in two weeks. Mouth starting to feel sore. He prescribed BMX? to numb my mouth as needed. Tried to be fit in early for radiation. Waited a few minutes, but they couldn’t do it. Debbie dropped me off at home and went to pick up the prescription. Went back for radiation (left about 3:25 PM). Had to wait a couple of minutes, but then did it.
When leaving, Debbie stood up and felt dizzy. We stood still for a minute and then walked down the hall. As she turned into the general waiting room, she got a little dizzy again, Once again we stopped briefly, then restarted. She was going ahead of me to open the doors. As she was going out the front-most set, she straddled across them. As she pushed out her knees gave out on her and she collapsed into the doors. But the doors continued to open, and she fell forward onto the rubber mats on the exterior concrete. I couldn’t lift her. An “Amazing Grace” medical vehicle driver got out and came to assist, but we couldn’t get her up. She went into NYOH to get help. A number of nurses and staff came out to help, one got a wheelchair. Debbie was able to get onto her knees, and then was able to get into the wheelchair. They wheeled her back to the chemo room, where they took her blood pressure and got one of the doctors to check her. Doctor Silvers had already left, so Dr. Schlossberg came in. After checking her arms, legs and head and talking with her, it was determined that she had suffered vasovagal syncope. She had only had a burger(?) and soda for lunch, and had been doing a lot of running around doing errands. She had only scraped her hands and knees a bit, and not hit her head. They gave her a bottle of orange juice to build up her energy, and Kristen put Neosporin and a clear bandage in her knee. Diane wheeled her to the lobby. Then Debbie took my left arm and Diane’s right arm, and we walked her to the van. She was OK. I couldn’t drive because I had taken Morphine at 4 AM. When we got home, Debbie ate some goulash and felt much better.
Week #6 Monday – Friday
04/14/14 – Radiation at 4:00 PM – Trouble eating because of mouth and throat tightness feeling; Boost & shakes
04/15/14 – Radiation at 4:00 PM – Trouble eating because of mouth and throat tightness feeling; Boost & shakes
04/16/14 – Radiation at 4:00 PM – Trouble eating because of mouth and throat tightness feeling; Boost & shakes
04/17/14 – Radiation at 4:00 PM – Trouble eating because of mouth and throat tightness feeling; Boost & shakes
04/18/14 – Nausea, couldn’t take any chemo or meds at home! Debbie called triage nurse. Went in for 1:00 PM for blood work, hydration (included nausea med and steroid). Finished there and went to Radiation therapy. Arrived early, but was actually done late because of limo’d patients from Amsterdam.
Dr. Silvers suggested we suspend taking Ibrutinib Saturday and Sunday, calling him on Monday.
Beginning to think that a specialized Cancer Hospital setting might be a good idea. Doctors and nurses are more readily accessible, and can react and respond more quickly. Plus, with all of the meds I am now taking, I get confused as to when and how I am to take what! My wife usually takes care of this for me, but she is becoming a bit overwhelmed, too. In addition, I seem to be able to tolerate medicines better that don’t have to be taken by mouth! If I had a port, I might be able to tale more of them that way, but I don’t. Will I make it through all of this? Will things improve after I complete my radiation therapy, or will the Ibrutinib still complicate my life? LORD, I pray that you help me ease all of this today and beyond… sincerely, please help!
04/19/14 – Other meds, Debbie has timeline; Morphine ~2:10 PM
…And that’s the last time that Dad was able to sit up and type at his computer. My mom took him to the ER on May 4 for abdominal pain, and he had surgery on May 5 because his appendix had ruptured. He seemed to recover well enough from that to be discharged by the end of that week, but he was never able to start back on his Ibrutinib again. He was taken back to the hospital by ambulance on June 3 after the last of several falls from which he could not get up without help, signed the papers to enter hospice care on June 4, had periods of lucidity where he was able to talk in a whisper on June 5, but was incoherent and wracked with pain on June 6. He passed away peacefully after two last deep breaths shortly after 3:00am the morning of June 7.
My dad, Joe Jerome, passed away on June 7, 2014 after a long battle with Mantle Cell Lymphoma. He had asked me for my help in setting up a blog where he could write about his cancer and his faith, but when he died without that happening, we knew he’d intended for me to have his files so that I could share the words he had written. I will be sharing his words posthumously over time, with only minor edits to fix the typos he would never have made if he hadn’t been so sick and so affected by his “chemo brain.”