I haven’t forgotten what day it is. However, I am away from the computer for a few days. This week’s Tao Tuesday comment will be a few days late.
October 6, 2012
Unfortunately, my brother, Lonny Paul Weltzer, passed away earlier this week. As you may know from what has been written here, he had suffered from a rare blood disease called myelofibrosis and had been fighting the complications of that condition for several years. When he couldn’t fight it any longer, he passed over peacefully in his sleep just before Midnight on Tuesday.
Lonny and his wife Deb moved to Austin, Texas shortly after he retired in 2010. His daughter Lisa also lives in Austin with her husband and two sons. His younger daughter Laurel lives in Greeley, Colorado with her husband and son.
We will have a memorial gathering in the Arvada, Colorado area, where he grew up, in early November; but the plans for that are not yet finalized. I can let you know about the gathering sometime soon.
In lieu of flowers, you may make a charitable contribution in Lonny’s memory, if you feel inclined to do so. An organization that seems relevant is the MPN Research Foundation, 180 N. Michigan Avenue, Suite 1870, Chicago, IL 60601. Additional information is available at the Foundation’s website – either:
http://www.mpnresearchfoundation.org/quick-online-donate or http://www.mfchallenge.org/Donate-to-MF-Challenge.
August 2, 2012
My daughter’s was married on July 15th. Paul traveled from Texas to Colorado to attend the ceremony (and to see his daughter’s family in Greeley). He was very tired from having made the trip, but he did make it!
The first round of chemotherapy for the incipient acute myeloid leukemia seems to have had no effect. Paul underwent another 5 days of chemo the week after the wedding. The doctors won’t biopsy the bone marrow for another month, so we won’t know until then whether the second round was successful. He will need to go through a third round of chemo in about a month, after which a decision may be made as to whether he will be able to have another stem cell transplant.
Our whole family remains optimistic, but the waiting periods can be frustrating.
I will briefly bring you up to date on my brother’s condition and progress.
The first round of chemotherapy – five days – has been completed, but it is not yet known how successful it has been.
My daughter is getting married in two weeks and Paul is planning to come from Texas to Colorado for the wedding. It is a good sign that he is able to travel. I will have a better idea concerning his progress when I actually see him.
He is supposed to start the second five-day cycle of chemotherapy back in Houston the day after the wedding. It is hoped that the acute myeloid leukemia will be found to be in remission (assuming that he actually had that condition) and the medical people can proceed to do the second transplant.
Once again, your prayers and good thoughts are appreciated. Thank you.
Not Good News – Another Transplant
It has been several weeks since I have posted any information and several people have asked about my bother Paul’s condition. This post is a bit tardy because I have been hoping that I could present some good news about a situation that is not constantly changing. Unfortunately, I can do neither.
It seems that a fairly large percentage of those who receive a stem cell transplant as treatment for myelofibrosis experience a relapse of the condition. The precise reasons for relapsing are not fully understood. It seems to me – and I am not a doctor – that the recipient’s DNA wants to keep making the kind of blood it is programmed to produce, even though that blood is defective and even though the cells for producing that blood have supposedly been destroyed by chemotherapy. The human body can do amazing things, though, including somehow resurrecting the destroyed cells.
After the transplant, Paul, like all stem cell recipients was living in a condition known as “chimerism.” That means that the transplanted cells, which have different DNA from the cells in the rest of his body were coexisitng with those other cells. As long as that coexistence was peaceful, he could lead a fairly normal and healthy life. However, when his own cells decided they wanted to move back into the bone marrow, serious problems arose and there was a relapse.
Six months after the transplant, a bone marrow biopsy showed that more than 90% of Paul’s stem cells had the DNA of the transplanted cells, so the chimerism was good. Two months later, that number had dropped to less than 60%, indicating that serious problems were developing. It seems that when such a relapse occurs the preferred initial treatment is a procedure called a “donor lymphocyte infusion.” That would entail the donor (me) donating additional lymphocyte cells which would then be infused into the recipient’s (Paul’s) blood. The theory seems to be that these white blood cells would help his immune system attack what were essentially his own cells that were trying to settle back into his bone marrow.
The donor lymphocyte infusion was approved by Paul’s medical insurance company, but another complication arose before the procedure could be scheduled. The most recent blood tests indicate that he may now be developing acute myeloid leukemia, which is a condition in which abnormal white blood cells accumulate in the bone marrow and interfere with the development of normal blood cells of all types. Since the fibrous tissue accumulating in his bone marrow because of the resurgence of his own stem cells also seriously interferes with the production of normal blood cells, the acute myeloid leukemia is a very severe complication.
The treatment that now seems to be appropriate is chemotherapy to send the leukemia into remission followed by a second complete stem cell transplant. Although I could be the donor once again, the doctors in Texas feel that there is a greater chance of success if another donor is used. My other brother, Jim, is also a very good match, so he is going to serve as the donor in the new procedure.
A paper presented by a group of German and Israeli stem cell specialist at the December 2011 meeting of the American Society of Hematology concluded donor lymphocyte infusions and/or second stem cell transplants “are effective and well tolerated salvage approaches, which result in the majority of patients in long-term freedom from disease.” (https://ash.confex.com/ash/2010/webprogram/Paper33003.html). That is good news, and we hope such long-term freedom is the outcome here.
I will update the situation as more information is forthcoming.
Transplant Update – Need for Prayers, Etc.
It has been a little more than six months since my brother’s stem cell transplant. For the first five months, he made very good progress. This last month has been rough, though.
The transplant was necessary to try to cure a condition known as myelofibrosis in which the normal production of blood cells is disrupted by fibrous tissues in the bone marrow. Additional information about the condition may be found in earlier posts on this blog.
It was hoped that the transplanted normal stem cells would replace the defective stem cells in Paul’s bone marrow. Within the past few weeks, though, the defective stem cells seem to be growing back, creating what is essentially a relapse.
As I write this, Paul is back in the hospital and the doctors are trying to deal with this unhappy development. Once again, if anyone reading this feels inclined to offer prayers, positive thoughts or healing energies, that would be welcome.
Time for Updates
I have not posted anything new for a few weeks, so it is probably time to update a couple of items.
Of course, the most important update concerns my brother’s progress since the transplant in September. Since then, there have been periods of good improvement and periods when progress seemed to have come to halt. Overall, it seems that Paul’s condition is much better than it was and the doctors are satisfied that he should keep improving. Before the transplant, he required blood transfusions every week or two simply to stay alive. It is now going on two months since his last transfusion. Recent lab work has shown that his blood counts are increasing and that the amount of fibrous tissue in his bone marrow is decreasing. Although it will be several more months before we know with certainty that the procedure was successful, we remain optimistic – and it is an optimism supported by the laboratory tests.
On another subject, I previously commented on the controversy as to whether stem cell donors should be compensated. It seemed that such compensation is prohibited by the National Organ Transplant Act of 1984 (NOTA). However, on December 1, 2011, the United States Court of Appeals for the Ninth Circuit decided a case entitled Flynn v. Holder. The court stated that peripheral stem cell transplants using cells collected from the blood through apheresis is not a procedure for which compensation is specifically prohibited by NOTA – because the procedure was not being done when the law was enacted. The court focused on the fact that although the stem cells originate in the bone marrow and are in the blood stream in large numbers only because of the Neupogen injections given to the donor, they are gathered from the blood stream and not from the marrow. Therefore, the court held that the procedure is form of blood donation for which compensation is permitted, rather than a bone marrow donation for which NOTA prohibits compensation.
There is nothing intrinsically wrong with that reasoning – and there would have been nothing intrinsically wrong if the court had gone the other way and seen the procedure as essentially a bone marrow donation. No other federal circuit has yet addressed the issue. Therefore, compensation for stem cell donations is now lawful in those jurisdictions over which the Ninth Circuit exercises appellate jurisdiction (California, Oregon, Washington, Idaho, Montana, Nevada, Arizona, Alaska, Hawaii, as well as Guam and the Northern Mariana Islands). Who knows when the issue may be considered by other circuits and whether the result will be the same.
My primary concern about permitting compensation is that I am not sure whether American patients and donors will be able to participate in international registries, possibly limiting the chances of matching appropriate donors and recipients.
Be that as it may, the most important thing to take from the post is that Paul is progressing well and we look forward to his continued improvement and to his future good health.
Happy Thanksgiving – Transplant Update
I am writing this on Thanksgiving Day, so I want to wish anyone who reads it a very Happy Thanksgiving, even if you are reading it on some other day.
In many ways this can be a difficult time of year, as I was reminded this morning when my daughter, Suzanne, told me that her fiancé’s grandfather passed away last night. Last year, my father passed away on the day before Thanksgiving.
Nevertheless, it is good that we have a day when we can pause and give thanks for our blessings – including the times that we have spent with family members and friends who are no longer with us.
This year, we can also be thankful that my brother seems to be doing quite well following the stem cell transplant. He had been been told that it might be necessary for him to stay in Houston until Christmas because of possible complications. Last week, though, the doctors said that is now safe for him to return to his own home in Austin. For the next few weeks he will need to return to the MD Anderson Center once each week for follow-up testing. The rest of the time he can spend at home.
Paul’s blood counts are still low, especially his red blood cells. I believe that it may be a year or more before it can be determined whether the fibrous tissue in his bone marrow will continue to be a problem. Right now we are simply thankful that he is progressing as well as he is.
We are also thankful for the support that has been provided by many people and in many ways. As an example, there is an elementary school student in Gilpin County, in the mountains West of Denver, named Sarah Trujillo. She has never met Paul, but every day for the past three months she has prayed that he will recover. You have to believe that God hears the prayers of children like her.
So — Thanks, Sarah. Thanks everyone. Happy Thanksgiving.
Payments to Stem Cell donors
Several days ago I commented on arguments that have been advanced for paying people who are willing to donate hematopoietic stem cells, a practice which is presently prohibited by federal statute (http://ralstoncreekreview.com/2011/10/ethics-and-markets-stem-cells/). I have more recently come across an article from the journal Blood published in January of this year (http://bloodjournal.hematologylibrary.org/content/117/1/21.abstract), stating the reasons why the World Marrow Donor Association continues to believe – as do I – that it is better that stem cell donors not be paid. The abstract of the article is as follows:
“Hematopoietic stem cell transplantation is a curative procedure for life-threatening hematologic diseases. Donation of hematopoietic stem cells (HSCs) from an unrelated donor, frequently residing in another country, may be the only option for 70% of those in need of unrelated hematopoietic stem cell transplantation. To maximize the opportunity to find the best available donor, individual donor registries collaborate internationally. To provide homogeneity of practice among registries, the World Marrow Donor Association (WMDA) sets standards against which registries are accredited and provides guidance and regulations about unrelated donor safety and care. A basic tenet of the donor registries is that unrelated HSC donation is an altruistic act; nonpayment of donors is entrenched in the WMDA standards and in international practice. In the United States, the prohibition against remuneration of donors has recently been challenged. Here, we describe the reasons that the WMDA continues to believe that HSC donors should not be paid because of ethical concerns raised by remuneration, potential to damage the public will to act altruistically, the potential for coercion and exploitation of donors, increased risk to patients, harm to local transplantation programs and international stem cell exchange, and the possibility of benefiting some patients while disadvantaging others. “
National Marrow Awareness Month
I have learned that this month – November – is National Bone Marrow Awareness Month. It has not been well publicized, but I heard about this from Costco so it must be true. This is actually the second month this year to focus on bone marrow or stem cell transplants as July was African American Bone Marrow Awareness Month.
If you have read previous posts, you already know how important bone marrow or stem cell transplants are to people with certain blood disorders or cancers. Each year there are more than 10,000 patients in the United States alone who could potentially benefit from such a procedure, but it seems that appropriate donors are found for less than a third of those.
It is not easy to find a matching donor. The most likely possibility is a sibling of the person needing the transplant, but there is only about a 35% chance that the sibling will be a match. If there is not a match with a sibling, the odds become much more onerous. I have read that for a Caucasian there is only a 1 in 20,000 chance of finding a matching unrelated donor. For other ethnic groups the odds can be 1 in 100,000.
It should be obvious that the more willing donors there are, the more likely it is that an appropriate unrelated donor may be found. If you are between the ages of 18 and 60 and have any interest at all in registering as a potential donor, you may learn how to join the registry at www.marrow.org or at your local blood bank. The previous posts on this blog will give you a good idea of what is involved. Being a donor is not all that difficult, and you could save someone’s life.