Today was for me one of the most anticipated days of the whole treatment.
They have officially given me back the stem cells they harvested from me at the beginning of this Autologous Stem Cell Transplantation treatment. After wiping out my old immune system with chemotherapy.
Watch how they do it in this video
So what does it mean exactly?
Well, in layman terms it means that I have given my body new stem cells that can grow into a new and healthy immune system. Which will be “MS free”.
TADA- I now have a 85-95% chance of being rid of the disease.
That’s your medium-long term data for RRMS patients at least. If it will last forever nobody knows yet, but the scientific data from the clinical trials are looking good. And the statistics are a hell of a lot better than with any medicational treatment.
Let me give you a quick example from one of the recent clinical trials before I move on to try and explain what’s going on with these stem cells.
For the HSCT group in this (unnamed, awaiting publishing rights) study, the proportion with no evidence of disease activity was 98.1% at 6 months and 1 year, 93.3% at 2 years, 90.3% at 3 years, and 78.5% at 4 and 5 years.
For the DMT group in this (unnamed, awaiting publishing rights) study, the proportion with no evidence of disease activity was 39.6% at 6 months, 20.8% at 1 year, 11.9% at 2 years, 5.93% at 3 years, and 2.97% at 4 and 5 years.
Now that you understand how good the numbers are, and why people like me choose to go for this treatment. Let’s try and jump back into explaining what’s actually going on with these stem cells in more detail.
The first thing we need to clear up is what we are actually talking about when we say “stem cells”. For us that are going through the Hematopoietic Stem Cell Transplantation (HSCT), we are talking about hematopoietic stem cells.
The treatment for multiple sclerosis and other autoimmune diseases is often referred to as an autologous Stem Cell Transplantation (aHSCT) treatment. The added “Autologous”, just means that the stem cells that are going to be transfused back into your body are your own previously collected stem cells. This lowers the risk of the treatment substantially, or so I assume. As the chances for rejecting your own cells are smaller than someone else’s.
What are Hematopoietic stem cells?
A Hematopoietic stem cell is an immature cell that can develop into ALL types of blood cells. Meaning red blood cells, white blood cells, and platelets. And are often also just referred to as blood stem cells.
These types of stem cells are found in the peripheral (circulating) blood and the bone marrow. And by giving the patient a G-CSF drug, which stimulates a release of these hematopoietic stem cells from the bone marrow into the peripheral blood. We’re able to collect these stem cells without an invasive procedure. We simply harvest/sort out these cells from the circulating blood, as mentioned in my previous blog post covering stem cell harvesting.
Let’s have a closer look at the development phases of a stem cell
As you can see from the illustration, hematopoietic stem cells develop into either red blood cells, platelets or white blood cells.
The cells that go under the category “white blood cells” are components of our immune system. They protect our bodies against stuff that doesn’t belong there. And unfortunately for us with autoimmune diseases, it’s also responsible for kicking our own ass/cells.
Specifically for multiple sclerosis, the immune system is attacking the myelin sheath covering the axon of the nerve cells in the central nervous system. Over time this damage will affect the nerve cells axon (nerve fiber) and its ability to transfer signals to the synapse terminal at the end of the axon. (Let’s not get into the synapse process in this post) Which eventually disrupts communication with the next nerve cell in the string. This disruption will eventually ruin that nerve cells ability to send a signal across its axon at all. Leading to for example paralysis.
Let’s dig deeper
The formation of blood components
Now, this is the part where some people will probably fall off the wagon because this is becoming some heavy stuff.
But for those of us affected with multiple sclerosis, or maybe you know somebody else with MS. I’m sure some of you are interested in getting an idea on how these immune cells work, and why we go through chemotherapy to have a chance of getting rid of this autoimmune disease.
Let’s focus in on the immune system –
The right part of the flow chart
In regard to multiple sclerosis, and which cells are doing the damage. We are talking about a subtype of white blood cells called lymphocytes. Lymphocytes are part of the adaptive immune system and are created from the stem cells from the bone marrow.
Lymphocytes who travels to an organ in the lymphatic system called the Thymus develops into T-cells. While B-cells are developed in the bone marrow.
The third type of lymphocyte matures in the blood and develops into what is called “Natural Killer cells”, who are active components in the innate immune system. Natural killer cells kill
A human being has over a million different B cell antigen receptors and 10 million different T cell antigen receptors. But each B or T cell has only one single receptor attached. The reason for so many different antigen receptors in our bodies immune system is because of a random delegation of receptor-genes.
This means that some undeveloped lymphocytes have antigen receptors targeting our own bodies molecules. Usually, these kinds of cells are eliminated by self-programmed cell death. After being tested for “self-reactivity” during the maturation process in the development phase in the previously mentioned Thymus or bone marrow.
If these lymphocytes with antigen receptors for our own molecules somehow pass this testing process (without killing themselves) during development. Autoimmune diseases like multiple sclerosis can occur.
B cells has the antigen receptors on the outside of the cell, which fits a foreign substance such as a protein or carbohydrate on the outside of bacterias or viruses (Pathogens). Or in autoimmune diseases like multiple sclerosis, our own cells.
When an antigen has bound to an antigen-receptor, the B-cell becomes activated. And starts multiplying, basically cloning itself, so it has more cells to attack with. Some of the clones become something called Plasma B cells, or they become memory B cells.
Plasma B cells
Plasma B cells are considered active cells. Which produce and release large amounts of antibodies. Binding of antibodies will not kill the intruding cell directly but may neutralize its activity or trigger engulfment (phagocytosis) by “eating cells” (macrophages or neutrophils).
Memory B cells
Memory B cells are a type of cell with a longer lifespan, and are able to multiply when presented with the same antigen in the future.
Enough about the B cells, lets talk about something else, the T cells!
T cells are the other type of specialized immune cells. T cells also have antigen receptors, as the B cells do. But they only bind to fragmented antigens present on the outside of cells. This fragment/antigen gets exposed on the outside of the
Just like the B cells, T cells also gets activated by antigen binding, which starts a replication process (cloning). Some of these clones become “T memory cells”, ready to multiply next time the same antigen is encountered.
Other clones become short-lived active cells, called “helper T cells” or “cytotoxic T cells. These “helper T cells” secretes signal molecules (cytokines) when bound to an antigen. This process will stimulate
I won’t dive into details about Natural Killer cells in this blog post, because quite frankly this is becoming too heavy for what it was supposed to be. But I do want to mention this;
Lymphocytes include Natural Killer cells, T-cells and B-cells. These are the main cells found in the lymph, which is the reason these cells are referred to as Lymphocytes.
The reason I want to mention this is because the total amount Lymphocytes is one of the things they are able to count as a part of your Complete Blood Cell (CBC) tests during the isolation period after chemotherapy. The data itself is pretty much useless for the average Joe, and Dr. Fedorenko won’t even give you this number if you don’t ask for it. But since I love numbers, statistics, and drawing graphs. This just gives me another parameter to play with during my isolation days. I like to try and understand what’s actually going on, and I will put these numbers in my upcoming graphs on the next blog posts covering the isolation period. Call me crazy!
Whats the point of this blog post?
The goal behind this blog post besides sharing the fact that I got my stem cells infused back into my delicious body. Is to try and give a better understanding of what multiple sclerosis is, and why aHSCT (with chemotherapy) is, in my opinion, the best treatment available for multiple sclerosis patients.
What are the alternatives?
We have disease-modifying drugs, which might work to some extent for some because they target and destroy T or B cells. But as you are probably now aware, these drugs can’t really do anything to stop the disease, they only slow down progression. Because these immune cells replicate/clone themselves, you can never really get rid of them all without going through chemotherapy. And hence you will never have an actual chance at stopping the disease, with disease-modifying therapy (DMT).
Stem cell therapy (without chemo)
I just want to mention this while I’m at it because I’m reading a lot about people being interested in doing stem cell therapy, without the “dangers” of going through chemotherapy.
Let me be perfectly clear: Stem cell therapy without chemotherapy will do NOTHING for stopping autoimmune diseases like multiple sclerosis. After reading this blog post it should be clear to you why that is by now. You need the chemo to wipe out the ”bad immune cells”, so they don’t continue replicating.
However I do believe there is great potential in stem cell therapies in general, and I have read some studies suggesting it can be a good treatment to heal already occurred damage, in some areas. But I need you to be aware of the difference between stopping MS and healing light damage done by MS. These are two different things.
aHSCT should be the first line of treatment for everyone who wants to try it, regardless of the very small risks involved. You have a higher chance of dying in a motor vehicle accident during your lifetime (1%). Than dying from a one-time aHSCT treatment (0,4%).
I’m not gonna sit here and tell you there are no risks or potential side effects involved with aHSCT because there are, but they are heavily exaggerated and highly predictable/manageable.
A completely dedicated blog post will be made about aHSCT and other treatment options in the future when I’m done actually going through it myself. And I plan to keep updating this blog throughout my treatment and recovery period, which on average takes about 1-2 years after the aHSCT procedure is done. (It’s a long run)
More on that later as well.
Bottom line, it should be the patients own choice what kind of treatment they want. And they should all be aware of the fact that without chemotherapy, there is no chance at a “cure”.
It is my wish that you will share this blog post to help spread awareness about multiple sclerosis, and this amazing treatment called aHSCT. Anyone somehow affected by multiple sclerosis, being it yourself or a family member, should be aware of these facts.
If you find my blog useful and would like to help support me in paying for this aHSCT treatment. You can do that through my Go Fund Me campaign on the link below.
ANY donation is greatly appreciated. <3
I also appreciate any comment, feedback, a share of the blog post or any other questions or suggestions to topics you want me to cover.