Update on Transplant

Update on Transplant

10-22-11

Paul has been out of the hospital for over two weeks and has not needed a transfusion during that time – and that is the longest he has gone since March.  His white blood cells remain within the normal range.  His red blood cell and platelet counts are still low, but holding steady.  The doctors recently biopsied his bone marrow and confirmed that the transplanted cells are, indeed, producing blood.

It is a slow process to rebuild one’s bone marrow, but Paul seems to be on course to do that.

Ethics and Markets – Stem Cells

Ethics and Markets – Stem Cells

10-19-11

A couple of recent developments have motivated me to make a few comments beyond the opinions I sometimes interject into these posts.

The first is that a friend recently asked about the ethics of stem cell transplants.  Apparently the phrase “stem cell transplant” has become a kind of buzz word that unnecessarily causes emotional reactions.  While there are serious ethical issues surrounding the use of embryonic stem cells for research and medical procedures, none of those issues relate to the use of stem cells such as I donated for transplant to my brother.  In its statement “On Embryonic Stem Cell Research,” the United States Conference of Catholic Bishops very plainly stated:  “Stem cells from adult tissues, umbilical cord blood, and placenta (often loosely called ‘adult stem cells’) can be obtained without harm to the donor and without any ethical problem, and these have already demonstrated great medical promise.”

Another ethical issue is whether donors should be paid to donate.  Currently such payment is illegal under the National Organ Transplant Act (“NOTA”).  In October of 2009, a lawsuit – Flynn v. Holder, CV 09 0772 – was filed in federal court in California challenging the constitutionality of the ban on such payments.  The district court recently dismissed that case.  The dismissal has been appealed, but for now the ban on payment remains the law.

There is a recent article in the Southern California Law Review which may be read at http://lawweb.usc.edu/why/students/orgs/lawreview/documents/SCalLRev84_Young.pdf

The author, a brand new 2011 graduate of the University of Southern California Law School, argues that the ban on payments should be lifted because it would offer greater incentives for people to donate and increase the possibility that those needing transplants  would find a suitable donor.

It seems, at least in my opinion,  that the underlying issue is not really an ethical one or the concern for access to treatment.  Rather, it is what kind of market can be created for stem cells and who is going to profit from their use.  At present, I am in favor of the prohibition on compensation under NOTA which keeps the US in conformity with international standards.

That prohibition does not mean that there is not an active market in some types of stem cells, however.  There are currently more than 150 companies involved in some manner in the stem cell market, some of which are publicly traded, and  which offer a wide variety on ways to enter the stem cell market.  Aastrom Biosciences, for instance is developing technology intended to help umbilical cord and bone marrow stem cells to replicate.  Some companies like Geron have been working for several years developing therapies based on the controversial use of embryonic stem cells.  Others, like Pluristem Therapeutics, Inc., have made advances utilizing less controversial placental stem cells.

I am not in any way recommending any kind of investment in any of these companies (though, in the interest of fair disclosure, I want to say that I own a small amount of stock in Pluristem).  I merely want to point out, with examples, that there is already an active market in stem cells.  Payment to stem cell donors, if permitted, would eventually increase the scope of that market.  However, unless such payment becomes an accepted international practice, it seems a bad idea.

 

Houston: We Have Engraftment

Houston:  We Have Engraftment

10-4-11

I have been waiting for a few days to post this.  As you may have noticed from prior posts, I like to at least try to understand some of the science behind the stem cell or bone marrow transplant process.  I believe that it has been established scientifically that if you write or speak about something good too soon it could jinx anyone involved in the process.  As a student of science, I did not want that to happen.

I mentioned in an earlier post (http://ralstoncreekreview.com/?p=53) that after the transplant has been done, the next major goal is what is known as “engraftment.”  Engraftment occurs when the donor stem cells (the ones that were taken from me) attach to the recipient’s (Paul’s) bone marrow so they may begin producing blood cells.  It cannot be directly observed when that occurs.  Rather, the doctors have been checking Paul’s blood each day, especially watching the white blood cell count.  White cells have such a short life span that any he had before the transplant would have died by now (even if they had survived the chemotherapy).  An increase in the white cells would indicate that they are being produced by stem cells.

Paul’s white blood cell level fell to nearly, but not quite, zero and then stayed at less than 5% the normal level for several days.  A little over a week ago, the white cell count began to creep slowly higher.  Within a few days, the daily increases became greater until yesterday when the count was within the normal range.  It was still in the normal range – even higher than yesterday – this morning, making it apparent that the engraftment has occurred. 

Since Paul is making white blood cells now, his immune system should be able to handle the dangers of the normal world, so he was released from the hospital this afternoon, nearly a month after he entered it the week following Labor Day!

This is significant, but it is only one of a number of steps that must occur if the transplant is to cure the myelofibrosis.  Although the white blood cell level is now acceptable, he has not yet begun making enough red cells.  In fact, he required a transfusion before leaving the hospital today.  His platelet count also remains low.  Therefore, the doctors are working to stimulate the production of those other cells. 

He has to stay in Houston for several weeks yet, and will be returning to the hospital for testing and treatment each day.  Next week they will perform another bone marrow biopsy to get a better look at the progress that has been made.  Still, the engraftment seems to have taken place.  This is very good news and a major step in the right direction.

Again, all of the prayers and Reiki and kind thoughts offered by so many people are sincerely appreciated.

Transplant Update

Transplant Update

9-19-11

This seems like a good time to update Paul’s progress for several reasons.  First, he received the stem cell transplant one week ago.  Next, I attended a high school reunion last weekend and several people asked about him.  Finally, Paul is entering another very important phase of the process.

Before getting to the update, let me briefly mention the reunion.  In addition to many members of our Arvada West High School Class of 1966, a few friends from other classes in the middle to late 1960s attended.  I was very favorably impressed with almost everyone who was there.  They are really good people and I feel honored and humbled to have known them at some time in my life.  I may not wait another 45 years to attend my next reunion;  I would like to see them again before 2056.

Now to Paul’s road to recovery:  His blood chemistry, and especially his white blood cells have been monitored daily since the transplant.  The white blood cells are now at only about 10% of their normal level.  That is not a surprise because white blood cells have a fairly short life span and the mechanism that would normally create cells to replace those that die was destroyed by the chemotherapy.  In order for additional white blood cells to be created, the stem cells he received in the transplant must attach to his bone marrow and start doing their work.  The doctors cannot directly detect whether that has been accomplished.  They can only determine that it has when his white blood cell count begins to increase again.

However, the doctors can aid the body in increasing the white cells by giving him a daily shot of Neupogen.  That is the same drug I was given to greatly increase the number of  my white blood cells and to pull stem cells out into my bloodstream to be collected and used for the transplant.  Neupogen is referred to as a “granulocyte colony stimulating factor.”  Granulocytes in this context are a type of white blood cell, the most common of which are called neutrophils.  Neupogen stimulates the production of these cells, assuming that the stem cells have attached and are capable of producing them.  Once neutrophils are created they only live for a few hours.  Therefore, if the level of the neutrophils, as well as other white blood cells, begins to increase, it shows that the transplanted stem cells are working.

Paul is, I believe, receiving a lower dosage of Neupogen than I got before my stem cells were “harvested” because the object is not to pull stem cells out into the blood stream.  It is simply to create neutrophils and other white blood cells.  If all is going as it should, we should see a significant increase in those white cells – and especially neutrophils – within the next week.

Since I am not a doctor, this explanation has been  simplified and is probably not technically perfect.  I think it is fairly accurate, though.  I will provide updates on Paul’s condition as I learn more.

Transplant Completed

Transplant Completed

9-12-11

My brother has completed the chemotherapy, waited 48 hours for the drugs to leave his system and has actually received the stem cell transplant. 

The proceure itself was uneventful.  The stem cells collected when I was in Houston had been frozen and stored until today when they were thawed and transplanted into Paul’s blood in much the same fashion as a transfusion.  The next two weeks or so are critical.

Having a few million extra stem cells floating in his blood is not going to help Paul.  Those cells now need to “engraft,” which means leaving the blood stream and taking up residence in his bone marrow and then dividing to produce the millions of additional stem cells his body requires. And, of course, all of those stem cells will need to begin producing new blood cells.

I have been visualizing the cells as having had velcro added while they were awaiting the transplant so they can easily attach to the bone marrow.  Thank all of you for whatever prayers, energy work or visualization you have contributed to the success of the entire procedure.

Stem Cell Donation – One Week Later

Stem cell donation – One Week Later

9-6-11

As I said previously, the only thing that matters about my stem cell donation is whether the transplant my brother will receive next week is successful.  Still, some folks have been kind enough to ask how I am feeling a week after the harvesting process was completed. 

Thank you for asking.  I am feeling pretty close to whatever it is that passes for normal. 

White blood cells are responsible for fighting infections, invading bacteria and viruses, and similar threats to the body.  Their activities cause the fever, muscle aches, fatigue and other fun symptoms that come with the flu.  The Neupogen injections caused my white blood cell count to more than triple.  The cells, of course, thought they were being called to destroy some invading organism, so they created the achy, feverish response while they went looking for something like a virus.  White blood cells only live a short time, though.  A week after the injections were finished,  most have died.  As a result, I am getting close to having my usual blood chemistry back.

Paul’s chemotherapy begins tomorrow morning – the first step in getting him back to health.

Beginning the Chemotherapy

Beginning the Chemotherapy

9-5-11

Happy Labor Day.

This is the first post-donation update on my brother’s stem cell transplant.  It is important to understand that stem cell transplants, which offer the only real cure for myelofibrosis, are not possible for everyone having the disorder.  It is a very intense treatment and many patients are not physically strong enough to go through the procedure.  Fortunately, Paul is one of those who is young enough and strong enough.

After the donor stem cells are gathered, which occurred last week, the next step is to kill off the diseased bone marrow using chemotherapy.  Paul received a test dose of chemotherapy on Friday, and then was permitted to go home for the long weekend.  Tomorrow morning he will be admitted to MD Anderson Cancer Center as an in-patient.  He will remain in the hospital for the next month or more.  On Wednesday, the chemotherapy will begin in earnest, continuing through Saturday.  Next Sunday his body will be given a day of rest, followed by the transplant of the stem cells one week from today.  For the next few weeks he most definitely can use all the prayers, Reiki, good thoughts and good energy he can get.

Stem Cell Donation – Day 10

Stem Cell Donation – Day 10

8-31-11

Six point one million.

For my brother’s stem cell transplant, at least 4,000,000 cells were needed.  Over the two days of apheresis, 6,100,000 were collected. 

The bone pain from taking the Neupogen is worse today than it has been any other day, but I don’t care.  I accomplished what was needed from me and I am now back home  in Colorado.

Of course, none of what has occurred during the past 10 days is meaningful if the transplant to Paul doesn’t proceed successfully.  He begins the preparation tomorrow, and he has some difficult days and weeks ahead.  I will post updates as we know how he is progressing.

I am very tired tonight, so this is a short post.  For anyone who is interested in becoming a donor – not everyone has a sibling available to donate, so donors are needed – good information is available through the National Marrow Donor Program, www.marrow.org or from your local blood bank.  If anyone would like additional information about my experience, you can post a comment here or email me at info@ralstoncreekreview.com.

Stem Cell Donation – Day 9

Stem Cell Donation – Day 9

8-30-11

At least 4 million stem cells are needed for the transplant.  I returned to the apheresis unit this morning to see if we made that goal yesterday.  The total was 3.26 million.  So, I had to take two more Neupogen shots and give some more blood.

I learned that some of the information I put in yesterday’s blog should be corrected.  I said that during the procedure the volume of the blood processed was a little over twice my total blood volume.  Actually, they processed three times my blood volume.  I also said that calcium was added to the blood returning to my arm to compensate for some calcium loss.  Actually, the tingling in my lips was caused by the anti-coagulant I was getting and the calcium treats the side effect of tingling or numbness.

About 80% of the needed stem cells were harvested yesterday, so it wasn’t necessary to take quite as much blood today.  They told me they would only have to process two times my total blood volume.  For some reason, my blood was not flowing as freely today and my nurse, Josh, had to make a few adjustments.  He took great care of me throughout the procedure and we were finished in 2 1/2 hours.

After the tubes were removed from my arms, Josh brought me some juice and Graham crackers.  I don’t think that all 17,000 employees of MD Anderson read yesterday’s comment about not receiving juice after giving the blood cells;  rather, its was probably one of those “ask and you shall receive” things.

Technically, I don’t know for certain if I am through with the harvesting process.  I need to return tomorrow to confirm that the required 4,000,000 cells have been collected, which is all but certain.

I went back to the apartment and took a nap – I was feeling “drained.”

 

Stem Cell Donation – Day 8

Stem Cell Donation – Day 8

8-29-11

Today was the donation, the reason I came to Texas.  At least I hope it was.  Before I leave I have to donate at least 4,000,000 stem cells, and I won’t know until tomorrow whether they have been able to get that many.

First thing this morning, I gave myself what I hope are the last Neupogen injections.  Then I went to the hospital and had more blood tests done to determine if the injections were doing their job.  My total white blood cell and neutrophil counts were each about triple the normal levels.  I was ready to be hooked up to the apheresis machine.

Apheresis is a process by which blood is removed and separated into its components.  The component that is being collected – the white blood cells here – is removed and stored and the rest of the blood is returned to the body.

I lay in a hospital bed and my nurse, Rolando, inserted a large steel-tipped IV line into a vein in my left elbow to remove my blood and a smaller plastic-tipped line into one in my right wrist to return the blood to me.  Because of the steel in my left arm I was unable to move that arm for the remainder of the procedure or it would puncture the vein.  The arm began to fee uncomfortable after a couple of hours, but I made certain I did not move it.

Once the procedure began, it was pretty much like a regular blood donation, except it lasted for 3 1/2 hours.  I am glad that they were returning a lot of the blood to me because apparently they processed about 12 liters (roughly 3 gallons) of blood, which is more than twice as much as I have in my whole body.

One strange phenomenon is that after the blood is processed it returns to the body much closer to room temperature than to body temperature, which caused me to feel cold.  To help me, Rolando periodically brought heated blankets.  Outside, it was 106 degrees today, but inside I was lying under a stack of blankets and feeling chilled.

Another peculiarity was that after half an hour or so my lips began tingling.  Apparently that is caused by an expected calcium loss and was controlled by adding calcium to the fluid returning to my left arm.

Otherwise, my biggest complaint was boredom.  I couldn’t move and had nothing to do but watch television for the entire time.  As usual, nothing good was on except “Bewitched.”   My only exercise was squeezing a foam ball every few seconds to keep the blood flowing.  And, of course, there is the problem that you cannot go to the bathroom while hooked up to the machine.

When the planned volume of white blood cells had been collected, Rolando removed the lines in my arms, covered the sites with compression bandages and told me to return at 7:30 tomorrow morning to find out if enough stem cells had been collected or if I will need to go through the procedure again. 

When I give blood to our local blood bank, they always provide juice and a cookie when I am finished.  I didn’t get that here, so I went back to the apartment and drank some orange juice.