Prayers For a Friend

Pattie and Pat Killingsworth

http://multiplemyelomablog.com/2015/07/did-all-of-this-really-happen-in-one-day.html

This is a link to a friend, Pat, who is also battling Multiple Myeloma. Stevan and I discovered his blog when Stevan was in the hospital being diagnosed. Pat was going through his first stem cell transplant. That was four years ago.

Over the years, I have been able to talk to pat via phone and email, to get suggestions on what to ask Stevan's doctors on how to proceed with his care. Pat has written four books on Myeloma, which I had purchased and loaned out to another friend, Barbara C., who we became acquainted with who lives in our home town who was diagnosed with Myeloma and was going to Stevan's doctor and underwent a stem cell transplant also. She ended up opting for a tandem transplant (a second one soon after the first) and developed an infection in her blood which ended her life.

When Stevan had his transplant, he had a pretty easy go of it. But he was young, relative healthy and other than developing an infection from his metal in his arm and having to take Vancomycin for several weeks. So these transplants are dangerous and can come with a cost.

I got to meet Pat and his wife Pattie, in March, face to face, at their Multiple Myeloma Beach Party. Pat had been a life line for me and Stevan, giving us so much information and blogging about his experiences and what he has learned over the years since he was diagnosed in 2007. I felt like I was long lost friends who finally got to meet them. It was the last night of the Party that Pat gave us the news that his doctors said that there wasn't much else to do for his Myeloma and that there was a chance that he might not be there next year for the third annual Beach Party. I felt like I had been punched....  It was like hearing I was loosing Stevan all over again.

Last week Pat underwent his second transplant and has not only developed one infection, but apparently several. He is a fighter. I ask that my prayer warrior pray for him and his wife as they go through this trial. He has given his life to help other Myeloma patients and caregiver understand this cancer and this community still needs him to continue his work.

Thank you

"I'm sick" Day +66

Everything was going so well with Stevan's transplant... now it seems like everything is going wrong.

Stevan did not feel good all day and has finally admitted that he is sick. We visited the Watermelon Festival in Valliant this morning before it got hot. And though we didn't stay very long, he threw up before getting his lunch today. He felt better afterwards, but he slept most of the afternoon. His stomach continues to be upset and around 9pm he began running a fever again... 100.3 He took two Tylenol and will be headed to bed soon. We think it best that he stay home tomorrow and not join us for church.

Yesterday was another long day in OKC. We started with an appointment with a PA, Natalie at the hospital. She was to give Stevan the look over and talk to him since he's been running a fever in the evenings, anywhere from 99.2 to 103 since Sunday night. She said that this could be a sign of the Vancomycin is not working on the bone infection. This means that the rod in Stevan's arm will have to be taken out in order for the infection to go away. Stevan has an appointment on Monday with Dr White, the orthopedic oncologist who placed the rod. He will make the final determination about the rod. If the rod is not pulled and the infection is not taken care of, it could result in Stevan loosing his arm or his life. He'll take the surgery!

We also discussed with her about getting a tandem transplant. We asked why Stevan was tested on his M-spike so soon and not wait til day 100. She said that the latest research is showing that labs taken at 4 to 6 weeks, if there a trace of M-spike it indicates they should do another transplant (tandem). Their thought is to continue to knock it back down further. She gave us a copy of Stevan's labs showing his M-spike over the past year so we could see the trend. (I have no idea what it all means or why the blood labs are different than the urine samples. This is something we plan on asking Dr Holter/Selby, unless some of my other MM readers want to help us out here.)

Blood labs
6/15/11 Two Monoclonal bands are observed in the beta/gamma region. Band 1 = 4.6 g/dL; Band 2 = 1.4 g/dL Markedly elevated total protein level observed along with two monoclonal bands, the strongest migrating in the beta-gamma interface region. The second monoclonal band is less intense and slightly more cathodic.

10/3/11 Two monoclonal bands are observed in the beta/gamma region Band 1 = .8 g/dL; Band 2 = .2 g/dL

1/12/12 M-spike not observed. Decreased total protein level observed along with a decrease in the gamma fraction. The pattern is consistent a "hypogammaglobulinemia" pattern. No monoclonal peaks are observed.

6/20/12 Monoclonal IGA Kappa #1 = .5 g/dL ; #2 = .1 g'dL Immunofixation shows IgA monoclonal protein with kappa light chain specificity.

Urine Sample
6/15/11 UR Protein mg/dl 6.3; UR Protein 24 hr 146.1; M-spike not observed, The urine protein electophoresis pattern reflects low molecular weight constituents found in normal urine. No proteinuria or anomalous protein is observed.

10/3/11 UR Protein mg/dl 8.9; UR Protein 24 hr 221.3; UPE shows atypical Gamma. Suggest serum and urine IFE, if clinically indicated.

1/12/12 UR Protein mg/dl 16.9; UR Protein 24 hr 373; Immunofix urine: Bence Jones Protein positive; kappa type. M-spike 11.8; M-spike 24 hr 44.0 Apparent monoclonal protein. Suggest urine IEP for further evaluation, if clinically indicated.

7/1/12 UR Protein mg/dl 13.6; UR Protein 24 hr 193.3; M-spike not observed. No monoclonality detected.

Natalie said that she would make sure that we get to speak with Dr Holter or Dr Selby on our next visit on Aug 15 to be able to ask more questions and have them to be more detailed in why they think Stevan needs to have a tandem.

Stevan then had his pulmonary test done to see how his lungs were doing. He did have some difficulty with this test. He realized that he doesn't have as much stamina as before the stem cell. He does get out of breath quite easily when he does any type of exercise. The tech told him to workout and do more cardio to help build his stamina up... Yeah right.

His last test was to look at his heart, specifically at his left side. All seemed well. It was a different kind of test than what he had done before. This time they took a sample of his blood and infused it with something for about 20 minutes. They then gave it back to him and took a picture of his heart pumping. It over-laid multiple pictures on top of themselves. The tech said that she would later be able to dissect his heart on the computer and move it around. Cool! The things they are able to do these days.

Last thing was to go get blood drawn for labs again. Not sure what tests are being done this time. Dr Holter had ordered some as well as Dr White. I'm sure we will get more information on Monday. Dr White, Orthopedic Oncologist, will see Stevan at 11am and hopefully we will have more information to pass alone about his arm and the rods. We are going to pack an overnight bag just in case he's still running fever and they decided to admit him. They may decide to pull the rod out Tue or Wed... we can only hope.

Many Disappointments Day 57

I want to begin by finishing the story on Doris from yesterday. She was a sweet lady getting a allogeneic transplant while Stevan was finishing up his at the first of June. As I said yesterday when we got to Dr Holters office I saw her and began catching up with her and her husband. She wasn't feeling good and her husband was very concerned since she was sicker now than she was in the hospital. Before we went in for Stevan's appointment, Doris came out from seeing the doctor. I wished her luck and I hoped she got to feeling better. She simply said "We are going back to the hospital now." I can't tell you how much my heart hurt at that moment for her and her family. This was the beginning of our disappointments for the day.

We had been visiting with another couple, where the husband had been released from the BMT unit the Monday before Stevan. His wife, I discovered had been a nurse. She would get so frustrated with him because he wouldn't do what the doctor had told him to do. Her and I had a lot in common! LOL. He had been doing well, but he also was on an antibiotic for some kind of infection. He only had to take it twice a day. And like me, she has had to revolve everything around his medicine schedule. She said she felt like a jailer trying to make her husband do all the things he's supposed to do or keep him from doing. LOL. We shared stories and it made us feel so much better knowing we were not alone!

I can't remember exactly what was said after we got into the exam room, but this is close to how it went. Dr Holter was the only doctor in the office and the Physicians Assistants were taking the patients with general visits... yes that was us. The PA was nice and asked all of the general questions... how was he feeling, any coughing up blood, fainting, swelling, fevers... She listened to his heart and lungs. The only other thing I really remember her saying was... "It looks like we need to do a tandem. But we are ordering another round of labs to make sure." My question, "Does that mean there was an M-spike in the last set done at the last visit?" PA, "Yes, it appears there was still evidence of an M-spike. But sometimes that is the case so quickly after a transplant, that is why we want to go ahead and run labs again to make sure." The PA never said how much of an M-spike there was on the labs. I will be putting together some questions to either call and ask one of the nurses next week.

A nurse came in and we asked more questions, "How quickly are they wanting to do the tandem?" Nurse, "As quickly as possible. We will have to wait until he is done with his antibiotics for his bone infection, but as soon as that's done then yes he will be ready to do the transplant." Us,"Will he have to take more oral chemo before he goes back in for the transplant?" Nurse, "No, unless he waits several months to do the transplant, then yes." Us, "Will he need to have more tests done before the transplant, like before, on the heart and lungs? And if so, will it take as long to get his insurance to approve of the transplant?" Nurse, "Yes. Matter of fact we can go ahead and get those test done while we are waiting for approval and while he is finishing up his IV antibiotics."

Stevan will finish up his IV antibiotics, Vancomycin, on Aug 8th. Pattie, the BMT nurse coordinator called this morning to tell us that his Heart and Lung test will be July 27 in the afternoon. We will then have to go back over to the infusion room for more labs to be done for pre-transplant. His next appointment with Dr Holter is on Aug 15, which will will be able to ask more questions and get a date for admitting him for the tandem transplant. The nurse yesterday said it could be the following Monday, Aug 20, (the day I am supposed to go back to work).

Stevan is upset and of course disappointed. He said originally he didn't want to do the transplant, but God moved him to do it. Yesterday in the doctors office, the first thing he said was, he wasn't doing another one. He missed out on deer season last year, he wasn't missing it again this year. Then he said he'd wait till Christmas to do it. Last night we got alone, we talked and he's feeling hurt and disappointed. I pointed out the fact that his first transplant, went so well and fairly easy, compared to others we have read about. And if he considers the fact that now almost two months out he can do just about anything he wants (within reason). I told him that he really should just get it done as quickly as possible, so that he can get it over with and be ready to hunt at the end of October, when muzzleloading begins. I think it is beginning to sink in now.

There are still a lot of questions to be answered. I'm not sure how much I will be able to stay with him this time around. We know what to expect this time around. I will have to talk to my principal and see what I can do. I hate missing out on the first of school. It sets the tone for the rest of the year. But as it should be, Stevan is my main concern.

Thank you for the continued prayers.