Another beautiful day here in a place where the sun shines over 300 days per year. The day started out in the low 50’s, but has rapidly risen into the 70’s. I am feeling great, and thank God that I do feel so good. As I read what others, with my SLL/CLL depletion say, I must thank God, who keeps me feeling healthy, normal, and enjoying everyday just as others do, even when my body is sick. As I think of the four years, going on five now that I have had this cancer, I really have found no physical changes, nor things I cannot do that any other 68 years would do. I also realize that many have and are praying for me, and I am very thankful to all of you.

Yesterday I was at the VA Hospital to give some blood for a new research program that is starting. My DNA will be taken from my blood sample, and research will be done, looking at my health background, and my DNA, hoping to be able to use the research to find cures for many different diseases in the future. The VA is hoping to have one million veterans participants in the research program. If they achieve their goal, it may be one of the largest research programs ever done.

If you are a veteran, and learning about this program for the first time, call your VA clinic and you will be able to get more information.

In earlier posts I have commented on the success enjoyed by FCR (fludarabine, cyclophosphamide and Rituxan) as the present day “gold standard” in the treatment  of previously untreated patients. For those of us with the 17p deletion the success enjoyed by so many with FCR combination looks not to be so good. Unfortunately this gold standard does not work well for the 17p deletion and can even cause more severe results in some cases.  So, if FC + Rituxan is good, how about substituting the other FDA approved monoclonal Campath in place of Rituxan?  If FC + Rituxan is good, would FC + Campath be even better – since Campath packs more punch and is also thought to work in 17p deleted high risk patients?

After a trial, for FC+Campath, in Germany, the results 8 deaths among 29 responding patients due to disease progression, Richter’s syndrome (2 patients), and one major late infection (tuberculosis). Progressive disease was the cause of death in 11 cases among 14 non-responding patients, shows it is not better and personally, seems real bad to me. Fludarabine and Campath (also known as alemtuzumab ) are extremely immune suppressive. Of all the drugs you are likely to encounter in your CLL journey, these two drugs are most justly infamous for destroying T-cell counts. And not having sufficient number of T-cells leaves people wide open to opportunistic infections and even secondary cancers – just think of the health issues associated with advanced AIDS patients and you get the picture.  Using both of these drugs (Campath and fludarabine) at the same time would be doubling down on the risk of extreme immune suppression. Patients would be at significantly higher risk of infections and even secondary cancers, when their immune defenses are down for a prolonged period of time. So for those with 17p deletion, neither FCR or FC+Campath is very acceptable. I guess if I had to decide on which one I would take, it would be FCR even though the average remission time, if obtained, is usually less than a year, but can last as long as three years. Of course being on watch and wait, I do not have to be concerned nor consider those remission times yet.

I think that a stem cell transplant is probably the best way to go, but it is not always possible. Age is a factor, cost another, and finding a donor is not always easy. Stem cell transplant technology is a rapidly developing field. The good news is that survival statistics and cure rates are increasing slowly but surely, year by year.

There are two types of stem cells, hematopoietic stem cells ( hematopoietic stem cells found in the baby’s cord blood),  Adult hematopoietic, (Adult stem cells) or blood-forming, stem cells from bone marrow), and the other is embryonic stem cells created when a human egg is fertilized by human sperm.

Being aware that I may need a stem cell transplant at some time, made me look into the matter more closely, and knowing what I now know, about adult stem cells, harvesting Embryonic stem cells seems senseless. This push for the use of embryonic stem cells, is hard to understand for me, considering the medical fact that, although there are over 100 effective treatments using adult stem cells (which are in ample supply), no treatments have resulted from even the embryonic stem cell lines that have already been established. Embryonic stem cells have never cured anything, and in many cases where they were tried, on animals, caused only tumors.

SLL/CLL is only one disease where  hematopoietic stem cells are used, and can make all the different varieties of cells present in your blood. HSC can make red blood cells, platelets, lymphocytes, macrophages etc. They have been found to be very successful when used. When I first found out that I had SLL/CLL and then was told, at some time in the future I may need a stem cell transplant, my heart dropped. Not knowing about adult stem cells, and there success, I knew when I was told, that I would not accept any embryonic stem cell. I accepted the fact, right there and then, if that was my last chance to live, then I would die

Hematopoietic stem cells needed for transplants are obtained from two sources and only these two sources (1) willing and healthy adult donors who are doing it for no other reason than generosity and desire to save lives (2) Umbilical cord-blood, a “waste” product that is generally thrown away after a baby is born. The baby is born, alive, going home with his or her mom and dad..

We now have non-myeloablative (also called “mini-transplant”, “transplant-lite”, or “reduced intensity transplant”, is a stem cell transplant from a donor (allogeneic) that uses a less aggressive combination of chemotherapy and/or radiation to prepare the patient for the transplant) pre-conditioning. It still uses massive amounts of chemotherapy, and many institutions still use low dose radiation as part of the protocol. But it is nowhere as high impact as earlier myeloablative procedures. The result has been that older patients, like me, are now eligible for transplantation, as well as those who are not quite marvels of good health and fitness.

There is a lot more information about stem cell transplants, however I will stop here. I am not there yet, although my Oncologists did mention it again, after telling me I had a 17p deletion.

After reading what I just wrote, I thought of the following Bible verses – For You formed my inward parts; You covered me in my mother’s womb. Psalm 139:13. Behold, children are a heritage from the Lord, The fruit of the womb is a reward. Psalm 127:3.

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