Relapsed High Risk Myeloma - Update June 18 2013

Did not sleep well last night, woke with left calf spasm and took 1/4 pain pill which seems to be hanging me over this morning.

Jani drove me to Lost Rivers Medical Center Lab in Arco, Idaho to have my CBC (complete blood count) done this morning. My white blood cell count fell from 2.7 to 2.0 (norms 4.5-11); ANC (absolute neutrophil count) and fell from 1.82 to 1.11 (norms 1.9-8.8). So, I probably should avoid hugging others for a while.

My hemoglobin is about the same as it was last week (8.2) before I had at transfusion of one unit of packed red blood cells at 8.5 today (norms 12-16). My platelets actually increased a TINY BIT from 28 to 33 (norms 140-440). Will continue to hold my aspirin 81 mg dose due to low platelets.

I'm not experiencing any shortness of breath with walking slowly right now, so decided that I did not need another transfusion of packed red blood cells today. 

Still need to be super careful with such a low platelet count.that I don't do anything that might cause me to bleed.

Will call triage nurse at St. Luke's Hospital in Twin Falls, Idaho if I develop any symptoms of severe low hemoglobin (oxygen carrying cells) or bleed from low platelets over the next week. My next appointment is not until Wednesday, 26 June 2013 for labs, and a bone marrow biopsy under conscious sedation. 

During my 1st Cycle of Bendamustine/Revlimid/Dex, my blood values stopped falling about 2 1/2 weeks after it was given and I'm on Day 15 of Cycle 2 today. Hence, I don't expect my blood values to drop much more for this 2nd Cycle.

My on-again to STOPPED gastrointestinal tract is on-again today. I never know, but glad to not be on the road to Twin Falls with it on-again right now.

A friend with myeloma as relapsed and that's not good news.

Relapsed High-Risk Myeloma Update May 8 2013

Had a rough night with nausea and almost throwing up a gazillion times. Finally decided to take compazine 5 mg, which helped at 4:15 AM. Took another 5 mg at 6:15 AM  and by then was very tired.

Jani drove me to St. Luke's Hospital in Twin Falls. We left at 5:30 AM. I slept most of the way drugged with compazine. My cheeks are red, but I don't have fever.

Had my blood drawn in the Infusion Center. My platelets only dropped a tad since yesterday from 33 to 31. Pharmacist Dave talked to me about my nausea and told me start Kytril tonight at bedtime. He said it sounded like the Aloxi yesterday had not worked for me. Continue on usual antacids Prilosec and Zantac twice a day. If they decide to give me a second cycle of Bendamustine (next month) then he will give me IV Kytril both Day 1 and Day 2 vs Aloxi.

Received Day 2 of Bendamustine IV. It only has to run for 30 minutes, so it is quick.

Jani went shopping while I got my medication. And we headed for home in Mackay by 10 AM. Home by 12:30 PM....beats the 12 hours that I was gone yesterday!

Did my telephone Celgene Survey over the phone for Revlimid - have to renew again in 6 months. Celgene survey is necessary since Revlimid is a relative of thalidomide which causes severe birth defects - you promise not to get pregnant, not to share the medication, and not donate blood or blood products.

Since, I'm on Revlimid, I can get blood clots, but since my platelets are so low, I'm only taking a baby aspirin 81 mg each night with it. Aspirin make my platelets even less "sticky", so I have to be careful not be be too active beyond being one with the sofa.

2nd ASCT - Day 82 - August 8 2012

Drove 135 miles to Twin Falls St. Luke's MSTI for my 8:20 AM appointment with Dr. Padavanija. I left at o'dark thirty and kept an alert eye for deer on the road...always a threat in this county. It is a very pretty drive with varied geographic changes including the Craters of the Moon National Park founded in 1928.

Rolling roads and lots of farm land with ranchers cutting and baling hay right now. Little traffic until you get to Shoshone. That last 20 miles to Twin Falls always has a lot of traffic and RARELY going the speed limit...and they aren't speeding!

I arrived in Twin Falls with just enough time to dash in to Walmart for a rolling cart. Jani packed all my things and lunch and I needed a way to maneuver it all in with me. The cart we used in Colorado was Jani's.

Got my blood on the first poke which is always nice since I have no port access anymore. They drew CBC, Chem Panel, and my multiple myeloma markers. The markers have to be sent to Boise, so it will be a next week before I know those results.

My CBC continues good. White blood cell count 4.2 (norms at MSTI 4.5-11); hemoglobin 13.8 (norms 12-15); and platelets 298 (norms 140-440).

My appointment with Dr. Padavanija went well. She always gives me a lot of time. While I was in the exam room with her, she talked to Dr. Han Myint (my transplant doctor at the University of Colorado) to discuss my continuing chemotherapy. Dr. Myint's note July 18 2012.

We are still waiting on the vorinostat approval from my insurance due to a mix up with a fax delivery. I will get Velcade 1mg/squared subcutaneously on Days 1 4, 8, 11 each month. I will take dexamethasone orally 10 mg on Days 1 and 2; Days 4 and 5; Days 8 and 9; and Days 11 and 12 each month.
When the vorinostat is approved, I'll take it orally 14 days and 14 days off. Hopefully, my blood counts won't FALL too much from these agents, but they will monitor them.

I will also start 81 mg of Aspirin orally today.

This chemo schedule will require that I drive to Twin Falls twice a week for 2 weeks and then I'll have 2 weeks free.

After my appointment with Dr. Padavanija, they took me back to the MSTI Infusion Room - which is very large. It seems even larger than it is with a 2 story ceiling and a floor to ceiling bank of windows on the far side. 8 recliners around a central round nursing area is the area I was directed too. 

A volunteer came by with a quilt for me that I get to keep. I'll keep it in Bart and use it each time I come.

Just like UCH, the infusion area is COLD. The nurse wrapped my area in a heating pad prior to her IV attempt. And, the television is too high for comfortable neck viewing.

My veins were NOT cooperative and I had 4 different pokes by 2 nurses before success. I needed an IV for Aredia (bone building) which they run over 2 hours 10 minutes. I took a Claritin tablet to help reduce the bone and muscle pain from Aredia.

The nurses were surprised that I packed my own lunch because they provide lunch for all patients in the infusion area - WOW.

I was able to leave MSTI around 1:15 PM. Went back to Walmart to pick up my dexamethasone prescription and a few things we needed back in Mackay. I took the dose of dexamethasone in the Walmart parking lot since I had just had a sandwich. I arrived home in Mackay just before 4 PM - a very long day, but I held up. My stomach was already upset form the dex and I took more Zantac which helped.

My brother, Jeff, arrives tomorrow night for a visit and Jani is scheduled to DEPART for her home in Colorado on Monday...oh, how I hate to realize that!

Started 81 mg of enteric coated aspirin tonight June 16 2011

The Revlimid chemotherapy that I will start in July may cause deep vein thrombosis (DVT) or pulmonary embolism (blood clot in the lung) as a side effect.  To help prevent that from occurring, I'll take a blood thinner like aspirin. I have NOT taken aspirin since I was 28 years old and had a bleeding peptic ulcer, so it is scary to even think about putting it in my system. However, I had the EGD (swallow the camera test) and my GI tract looked normal - so, I'm going to give the aspirin a try. If I cannot tolerate aspirin, then I'll have to do heparin injections or coumadin pills.

Dr. Moore Appointment and PET Scan Result June 13 2011

We saw Dr. James Moore before my 1st chemotherapy infusion. I really like Dr. Moore and he always gives us all the time we need to have our questions answered. He never acts rushed and thoughtfully provides responses to our inquiries.

We told him how prepared we were with Bart and the cooler of food and he said he liked that because he was an Eagle Scout - I liked that about him!

I asked Dr. Moore to look in my right eye because it felt like it had something in it ever since we left post-op for the port placement. He looked and could not find anything. Jani had some eye drops and we put those in a couple of times which helped.

Dr. Moore asked me today about my emotional health and I told him I was fine. He wondered since the poor chromosomal studies (cytogenetics) were mostly the topic of my last visit with him. I told him I was going to see Dr. Myint at the University of Colorado Bone Marrow Transplant Clinic on Wednesday and he was pleased at how quickly his office had gotten me an appointment there. Dr. Moore thinks I have had multiple myeloma for some time.

Despite not wanting to take aspirin because of my prior history of a peptic ulcer, he wants me to give 81 mg enteric coated baby aspirin (ASA) by mouth a try. I will need to thin my blood when I  start on the chemotherapy agent, Revlimid, because it can cause deep vein thrombosis and/or pulmonary embolus.

Dr. Moore gave me a referral prescription to the Rocky Mountain Cancer Rehab Center at the University of Northern Colorado for an individualized exercise program to combat fatigue with my cancer and chemotherapy.

Dr. Moore gave me the results of my PET Imaging that I had done on June 9 2011. Perfectly Normal.

Dr. Moore explained that the dark area on my brain were from using my brain and the other dark area are normally seen in the kidney's and the bladder.

The radiologist who read my PET Scan was Peter D. Koplyay, MD