This section contains updates on Julie’s allogenic stem cell transplant.
Friday, December 6rd, 2002
We've had a full couple of days. Wednesday, Julie's dad was run through a days worth of tests so he would be ready to have his cells collected on Thursday morning. Julie's started early Thursday morning with some additional tests followed by a bone morrow biopsy. After the biopsy, she went to the transplant floor for the DLI (donor leukocyte infusion) where she received her father's cells. At 11:30pm, we were done. She had a bone survey (a set of 22 x-rays) this morning and that completed the first round of tests and treatments.
Here's what we know so far. When they repeated the test for myeloma protein on Thursday there was 532 mg of protein compared with 168 six weeks ago. For reference, it was over 4000 when she had the first transplant. The bone survey showed that the bone lesions caused by the myeloma have increased since the last survey six weeks ago. The results of the bone morrow biopsy, which shows the actual level of cancer are not back yet. In summary, we know the cancer has returned and growing. We know it's not slow growing but we don't know if it's really aggressive like it was last time.
As far as treatment goes, she had her first DLI yesterday and we don't expect to see anything for three or four weeks. Hopefully, she will show signs of GVHD (graft verses host disease), which would indicate that the cells are also working against the cancer. If there is no sign of GVHD, we will return Mayo in a month to check the level of myeloma protein and probably for another DLI with more cells. If nothing still happens, I believe it is repeated one more time before we would switch to chemo therapy to try to reduce the amount of cancer. In the best case at this point is that Julie would develop a treatable amount of GVHD and the cancer would be put back into complete remission. The biggest risk is that Julie could develop GVHD that could not be controlled.
There is hope for Julie's current therapy and there is additional therapy that can be done if this does not work. I'll try to keep things updated if there are any developments, otherwise, I'll let you know how her appointments go at the first of the year.
Tuesday, December 3rd, 2002
At our appointment with Dr. Gertz today, we found out that the amount of myeloma protein has increased. Given this we have three options. Since the level is still at a low amount we could wait and see what happens. If we do therapy we could either do chemo therapy or immuno therapy. At this time, we are looking at following the immuno therapy approach. Most likely, this will involve collecting her father's white blood cells possibly as early as Thursday morning. Julie would then have a large number of tests on Thursday and would get the infusion on Friday.
Wednesday, November 6th, 2002
After six months of good reports, we found out last month that a small amount of the myeloma protein has reappeared in Julie's blood. This is concerning so we have another appointment scheduled for the week after Thanksgiving to check the levels again. Dr. Gertz says that he has a handful of patients where the level of cancer remains at a low level and is kept in check by body so no further treatment is required. If there is an increase at the next appointment, they will take most likely give Julie an infusion of white blood cells collected from her dad. The "graft verses myeloma" effect, in which Julie's dad's white cell attack the cancer, may bring the cancer back under control.
Our next appointment is December 3rd so we should know more after that and I will try to get the site updated with the new information.
Wednesday, Apr 17th, (Day 104)
We had our appointment with Dr. Gertz today and we received very good news from him. There is no evidence of the myeloma protein in her urine or her blood. There were not enough plasma cells in her bone morrow to label. These are tremendous results.
Julie starts her taper off of the anti-rejection drugs now. They weren't sure yet how often she will be returning but it will be sometime between every one and three months. She will have a bone morrow biopsy every six months.
When I asked Dr. Gertz what the future looks like as far as the disease is concerned, he said the first transplant of this type was done in 1998 and only about 100 have been done worldwide. (I'm not sure if he's taking about the non-ablative transplant or doing tandem transplants.) These transplants have been done for a variety of diseases so there is no data to say what will happen. He did say that the first question we ask at every appointment is "Has the cancer returned?" Last summer, when we started the whole process, we were told that 20% of the patients die within the first year, 30% achieve complete remission and the remaining 50% have the cancer come back in 3 to 5 years.
Basically, we just wait and see. During that time, we live life to the fullest taking no day for granted. (Just like every one should live life.)
Tuesday, Apr 16th, (Day 103)
We arrived in Rochester last night. We went out for an early dinner and as we were heading back to the parking lot we heard some guy yelling from across the street. Julie turned around and we were surprised to see that it was Dr. Gertz coming to greet us. He gave Julie a big hug and said she was looking great. Julie asked if he was going to give her good news on Wednesday and he said, "With as good as you're looking, I probably will." That is a big comfort to hear as we go into this day of testing and as we wait to see Dr. Gertz tomorrow.
So far today Julie is done with her blood work and pulmonary test and she is currently having her bone morrow biopsy. This afternoon, she has a bone survey (a set of 22 x-rays that will show the affect of the cancer on her bones) and an appointment with the pulmonary doctor. I expect it will be a quiet evening tonight as she will be rather tired from today's test.
It was strange being back at the transplant house. We only recognized one person who was there before. We have asked you to pray for a young man named Matt before, and we ask you to continue to pray for him. He was in the hospital when we left in February and he is still in the hospital now.
I'll get another update out tomorrow when we find out the results of the tests.
Sunday, Apr 14th, (Day 101)
We've done some exciting things since my last update. Julie got to go ice skating last Tuesday. She was a little shaky but had a lot of fun. Two years ago, she was starting to do jumps and spins in her skating lessons. She probably won't be able to do that again, but she still had fun being out with the kids. Julie was also able to ride her bike around the driveway a bit. She got a new bike last spring in expectation of riding with the kids last summer, but that never came to pass so she was very excited to be able to ride a bit today.
We head back to Rochester tomorrow for Julie's checkup. We have a full day of tests on Tuesday and we meet with Dr. Gertz on Wednesday. I'll try to keep the web-site up-to-date as things transpire.
Thursday, Apr 4th, (Day 91)
Things are going well here for us in Mankato. Julie's appetite is good. She has not had any problems with nausea recently and the headaches she was having have decreased quite a bit. Her strength is improving; she is now able to ride the exercise bike for ten minutes at a time and she can stay awake for 14 to 15 hours a day without overtaxing herself. While that's not where she had been a year and a half ago, it is much better than she last summer before the first transplant.
In 11 days, we head back to Rochester for Julie's 100-day appointment. At that time, they will do a bone morrow draw to find out the level of cancer. They will do a bone scan to see what is happening with the cancer-caused lesions in her bones. And they will test her lung function to find out how the asthma is doing.
We are a little apprehensive as we approach this time. Julie has been having some bone pain and in light of what happened to our friend John (see the last post), we are wondering what is going on with the cancer. We also know that if the cancer is under control, we will be entering a time of risk as they begin to reduce that amount of anti-rejection drug Julie is taking. The risk is not as high as the initial chemo and transplant, but it is significant.
Please pray for our continued peace. We would also like you to pray for Megan. I believe we have mentioned her before. She is in her early 20's and had an auto transplant in early January. Her recovery has been slow. Please also pray for Pastor Paul Lindstrom and his wife Florie. He is Julie's mom's pastor at their church in Chicago and he was diagnosed with the same liver disease that Walter Patten had. He went to Mayo and was told that things were too advanced for treatment there. He is now in Mexico pursuing treatment. Pray also for his church, The Church of Christian Liberty. He was the founding pastor of that church about 40 years ago and this is a hard time for them as well.
Saturday, Mar 23rd, (Day 79)
We've been home for a month now. The time seems to fly so quickly. Julie is doing well. She has lost quite a bit of weight since she came off the Prednesone but she is still a fair amount and keeping it down. Her strength is good enough for her to teach the children during the day but her strength is pretty much gone by 7:00pm or 8:00pm. She is doing very well for this stage of the transplant.
We were thrown for a bit of a loop last weekend when we learned that John, one of our friends from the transplant house, had passed away. He had an allogenic transplant at the beginning of November. When we arrived at the transplant house in December, he and his wife were routinely walking the 1/2 mile from the transplant house to the hospital for his daily appointments. When he left in January, he was looking really good. We found out that he died February 14th, which was day 106 after his transplant. His cancer was very aggressive and it came back. It was a stark reminder to us that we have passed part of the treatment but that we have more that remains ahead of us. Please pray for Laura, John's wife.
The benefit that we draw from this is remembering that each day is a gift and needs to be treated that way. Every day should be used to its fullest and none should be wasted.
We now have a little over three weeks until we go back for Julie's 100 day checkup. At that time, Julie will have a bone morrow draw and we will find out the level of the cancer. If things are looking good, they will begin tapering her off the anti-rejection drugs. I hope to have another update before than.
Monday, Mar 11th, (Day 67)
Things have been going well for us since my last update. The removal of Julie's Hickman catheter went well last Monday. Since the catheter enters a main vein close to the heart, Julie had blood work done Monday morning to make sure that she was clotting fast enough to avoid problems with the removal. Her blood counts were close to the lower side of normal; about the same level they were when we left a week and a half before. We also got the test results showing that her blood is 100% her father's DNA. All these are very good signs.
Last Tuesday, Julie stopped taking Prednesone to treat her asthma. Since then her breathing has been good. Her stomach does feel a little uneasy and her appetite is decreased but she is still eating enough and it is staying down. Hopefully, this will continue.
It was rather odd to be back in Rochester just for a day. We stopped up to the bone morrow transplant unit to visit the staff there. We went back to the transplant house to get our name on the list for a room for our 100 day appointment in mid-April. And we had breakfast at a restaurant that we ate at dozens of times during our four months there. At that time it hit me that we don't have another long period of time in Rochester scheduled. While I have no desire return to Rochester for medical reasons, my life for the last 11 months has been planning for extended time there. As strange as it may sound, there was some sadness at the passing of that time. It was hard, but there were many good things about it as well.
While we were visiting at the hospital, we saw a 21 year old man who had a transplant at the same time as Julie. He was in the hospital when we left and my heart sank to see him still there. I was also surprised by several people who were still in the transplant house that we expected to be home be the time we came back. These things really drove home how easy we hard it during the transplants and how well things have been going now. We just need to continually focus on the blessings in our lives to keep a proper perspective.
Julie gets rather tired these days, but she is able to take care of the kids and teach them all of their lessons. She is usually ready for bed about 7:00pm but stays up until 8:30 or 9:00. Things should continue to improve gradually over the next month and we don't expect anything big before her 100 day appointments. At that time, a bone morrow biopsy will be done to check the level of cancer and, if everything still looks good, she will begin a slow taper off of the anti-rejection drugs. When she begins to come off the anti-rejection drugs, we could see some possible severe graft verses host disease. No point concerning ourselves over that now, we just need to enjoy the next month.
I'll try to update the site weekly or sooner if something notable happens.
Saturday, Mar 2nd, (Day 58)
We have been home for over a week now and have been enjoying it quite a bit. The Prednesone Julie is one for her asthma seems to have calmed her stomach and it has increased her appetite. She comes off of that Tuesday so we will see what happens after that. For now though, she is eating well and being able to regain some of her strength.
We go back to Mayo on Monday for some blood work and to have her Hickman catheter pulled. After that is pulled, any blood drawn or IVs given would need to go through her veins. We expect to be in Rochester for just half a day.
We also got the appointment set up for her 100 day visit. We expect to be there for a couple of days in the middle of April. At that time we will see how the cancer is doing and Julie will begin tapering off the anti-rejection medicine. That is the next risky time for Julie as she could still encounter serious and chronic graft-verses host disease at that point.