The day you receive your stem cells back during the aHSCT treatment, is regarded as Day 0 of the rest of your new life. It symbolizes being reborn, with the chance of being free from multiple sclerosis. And obviously, an occasion like this deserves a birthday party.
The event involves Dr. Denis Fedorenko congratulating every treated patient on that day, with their successful stem cell transplant. He gives each and every friend a symbol of new hope and faith with their new life free of multiple sclerosis.
Most of the other patients in the transplantation ward attend this event unless they are in isolation. Making them sit in their rooms listening to everyone else having a good time and eating cake. There is lots of emotion, kind words and tears involved. Especially tears, from the guys in isolation eating their microwaved apples…
The tour guide – Also known as машина
For most of us, that travel there for aHSCT, get a chance to meet a Russian guy named Alexey Derkatch. He is mainly a tour guide that you can book to take you around town in the few first days of your stay when you don’t have to be at the hospital. I highly recommend booking a tour with him if you are ever in Moscow. He is like MacGyver, give him a pack of gum and a few cigarets and he will make anything happen for you.
Can’t forget about the cake. It’s up to each patient if they want to buy a cake to bring and share with the crowd at the birthday party or not. But it has become some kind of tradition for the most part I believe.
Alexey was actually the one who put me in contact with this amazing 15-year-old confectioner, who was able to take a special cake delivery in a very short time in regards to the stem cell birthday party.
His name is Иван Чупов, or Ivan Chupov in English. And the cake he made for me was hands down the best cake I’ve ever had.
Check him out on Instagram
As you might imagine, I’m starting to have an issue with the so-called “Big Pharma” companies. Because it seems to me like they are doing everything in their power to suppress treatment that actually works, in favor of selling expensive drugs, with very low effect on progression and serious side-effects.
You can’t even imagine the amount of money these companies make on these drugs, so it seems logical for me that they could possibly be playing some strategies here to maximize profit. I’m not going to go all conspiracy mode yet tho, before I get some more facts straight.
It is possible im just frustrated because I’m in this position myself.
Let’s rather touch on that subject on a future blog post with some hard evidence backing eventual claims, before making any accusaions.
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
Haematopoiesis – 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 virus infected cells.
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 cell as a result of the bacteria or virus (Pathogen) being broken down, for example by B cells, dendritic cells or a macrophage.
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 activation of B cells or cytotoxic T cells, destroying the cells that are infected.
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.
Today is my first day off after starting the chemotherapy treament. And it’s also the first time I’ve started to feel some side effects.
In general I have woken up at 6-7 am with a lot of energy, but today I’m feeling kinda tired and sick in my stomach. Nausea I think they call it.
I got woken by the lovely nurse Elena to do some blood tests.
I love the fact that I can just lay there in bed while she tap’s into my neck catheter, its so convenient!
Next up was a delicious oatmeal breakfast followed by a handfull of pills.
After the pills another lady came in to give me an electrocardiograph to check my heart rhythm, which apparently still looks fine
After this test is another infusion with mesna and aprepitant (supportive drugs).
Followed by injection with a diuretic to make you lose some of that water bloat from the steroids you got during chemo. And to top it off they always inject some anticoagulant into the catheter for obvious reasons.
Since the chemotherapy days are very similar, and I’m already behind schedule on the day-to-day blogging, I will just give you a small update on the last two days so I can get back in sync.
This is how it sounds like when I’m getting pumped up on chemo
I’m still feeling fine, I don’t have any of the most common side effects, which are:
Maybe I will start feeling some of these during the isolation phase, but so far so good!
The only thing I really notice is some kind of pressure in my bladder, I think my good old blatter is a little overworked after all the urination I have put him through the last couple of days. All that liquid they put in me needs to come out somewhere!
Today the 26.03.2019 was my last day of chemotherapy, tomorrow I will have a rest day before I will have my stem cell transfusion on Thursday! I am seriously excited about how it will feel like to get those stem cells back into my body, this will be a once in a lifetime feeling that I will remember for the rest of my life.
As far as I can tell, chemotherapy hasn’t affected me at all
Regarding to the chemotherapy protocol, this day is the same as the previous day.
I’m honestly quite surprised I haven’t felt any side effects yet, in fact, I feel better than ever! Probably because of the supportive drugs, but heck I’ll take it!
Since there is not much to tell about the chemo itself, let me show you where the blog-magic happens instead.
Nutrition during chemo is pretty much the usual balanced diet they already serve at the hospital. But they have started giving you some shakes to make sure you get some essential nutrients. Some people lose appetite during chemo so it’s a good alternative just to get something into your body.
The feeding schedule
9 am: Breakfast
11 am: Piece of fruit and some juice
2 pm: Lunch
Dinner: 6 pm
During chemotherapy, they will give you a nutritional shake you can have if you want. The shake’s brand name is “Supportan” and comes with a tropical and cappucino flavor. It’s essentially a meal replacement for cancer patients.
Contents per bottle / 200ml:
Total energy: 300 kcal
Fat: 13.4 g
You can find full nutritional information on the product here.
During this chemo time, we are allowed to walk wherever you want basically. So I have been doing some strolls to get some movement in. Here is a picture of me exploring the nearby premises.
Today is the day I have been looking forward to, it’s time to start getting rid of those bad immune cells. If I am able to remove all immune cells that have been “programmed to attack my own body”, I will effectively have been cured of multiple sclerosis.
Yes I said it, CURED.
Obviously, a medical professional can’t use this word, understandably. Because the word entails some guarantee and hope of regained functionality, you can’t guarantee to be able to kill off all the bad immune cells, and you can’t guarantee one of these cells won’t be created by mistake again and allowed to replicate. I will try to explain how these autoimmune diseases “work” in a future blog post.
Simply put, there are no guarantees in this game.
But you’re chances of success are high.
However, if I am successful with destroying all of the immune cells, so I can rebuild a new immune system from scratch based on healthy cells. It makes sense to me that this would stop the disease. Because there are no “bad cells” that can reproduce, and cause further damage to my central nervous system.
The day begins
I wake up at around 6 am, I’m too excited about whats going to happen today so I’m unable to get back in bed to get a few more hours of sleep. Which probably would have been a good idea.
Instead I decide to make a cup of tea, which I have never done before in my entire life.
It turns out drinking a cup of tea in the morning isn’t too bad. It gives you a soothing relaxed feeling, which is nice.
Before I’m allowed to eat breakfast they come in and measure my bodyweight, to be able to calculate today’s dose of Cyclophosphamide (chemotherapy).
A common chemo protocol for aHSCT treatment internationally is 200mg Cyclophosphamide per kg body weight, it’s the same protocol that is being used in Sweden, Norway, Denmark, Canada, US, Singapore, Mexico, and several other places.
Since I’m a smart guy, I made sure to add 10 more kg’s to my body weight before I went to Russia. To make sure I get the most chemo for the money. Brilliant, ey?
9 am is breakfast time, and today they served porridge and bread. I’m not sure if they are used to eating porridge with bread in Russia or what. But I prefer to eat that bread with some tuna instead. Honestly, King Oscar’s tuna “Hot Thai Chili” spread on a slice of bread is amazing!
Time for infusions
At 11 am it’s time to start with the infusions.
In this rack, you can see 5 bags of fluid, these contain:
Bag 1 – 9 grams of Cyclophosphamide, mixed in a saline solution
Bag 2 – 9 grams of Cyclophosphamide, mixed in a saline solution
Bag 3 – 500 ml saline solution (0,9% NaCl)
Bag 4 – 500 ml saline solution (0,9% NaCl)
Bag 5 – 500 ml saline solution (0,9% NaCl)
Basically, they have watered out the chemo-drug with 2 liters of saline water. They first give you 1-1,5 liter of pure saline water to make sure you are hydrated. Before continuing to give you the chemotherapy drug, that is mixed with 2 liters of saline water.
All these bags will be hooked up to my external jugular vein through the new central venous catheter I have put in. This type of catheter is called a triple lumen catheter. As you might have guessed this means it has 3 individual chambers inside the same tube.
This catheter can be used in the following useful ways:
Infuse different types of medications at the same time, for example, methylprednisolone and sodium chloride (water with salt) at the same time.
Double down on the same drug, for example, chemotherapy. Flow-rate can also be controlled by a machine.
The most interesting feature, in my opinion, is the ability to measure the right atrial pressure. This reflects the amount of blood returning to the heart and the heart’s ability to pump the blood into the arterial system.
This will probably be a useful metric for the Doctors to have when I’m going to get infused with my brand new baby stem cells in a couple of days. To make sure my heart is functioning properly.
Time to get started
After the chemo drug, Cyclophosphamide has been infused. I still have 2 more infusions coming that day, a couple of hours later. Both containing supportive drugs to protect my organs and for my well being. The drugs are commonly called mesna and aprepitant.
Mesna is used to protect against hemorrhagic cystitis, which is an inflammation in the bladder. It goes without saying that avoiding any type of inflammation is a good thing considering you’re trying to eliminate your immune system.
Aprepitant, or what I suspect is actually called Fosaprepitant, is an anti-nausea and vomiting drug.
You also take these oral drugs:
Co-Trimoxazole 960 mg/EOD
I will cover what these drugs do in a later blog post, detailing the drug protocol.
As you can see in the photo below, I’m already lovin it!
Today is a slow day, the only thing on the agenda is to get a new central venous catheter installed in preparation for tomorrow’s chemo. The main difference between the catheter they used for stem cell harvesting and this one, is it’s 3 internal chambers. So it’s like a “3-in-1” tube. This is useful because they can give chemo and steroids at the same time, and also draw blood when needed. The sky is the limit!
I don’t have a video of this procedure, because it’s basically the same as the last one. At first, they tried to use the same jugular vein on my right side where the previous catheter was installed. But that didn’t work very well, as they weren’t able to get it in. So they tried my subclavian vein on the right side instead, still no luck. Apparently, my veins were too small.
After 2 failed attempts they sent me to an X-ray to make sure there were no internal issues, like blood in the lungs or something similar. I was fine.
They eventually attempted my left side jugular vein, and it was a success.
So now I look like this:
They do eventually put on a more sturdy bandage, which makes it feel a lot better to dance around with.
Fun fact: The central venous catheter tube is 30cm long in my case, which brings it very close to the heart.
As planned I continued my stem cell harvesting today, and it’s the same procedure as yesterday. So there is nothing new and exciting to write about that, but I did, however, get my hair cut.
There was a small issue during today’s stem cell harvest. The blood in two of the collection bags on the machine coagulated, which is not suppose to happen. So the process had to be stopped. Which ment today’s harvest ended prematurely. The bags containing the extract of stem cells were unaffected.
Luckily for me, my body had produced enough stem cells already, which had been collected by the machine before the incident. So this minor hiccup does not delay the schedule. I have now harvested about 140 million hematopoietic stem cells from my own body that can be reinfused after the chemotherapy has done its job.
Neck catheter removal
Here’s how removing the catheter from the external jugular vein looks like:
FYI, I don’t speak Russian, so that makes the whole experience more interesting for me! 😀
Today it’s time to start collecting some of the stem cells that has been released into my blood stream during the previous days.
To manage to do this they connect me to a blood collection machine via the neck catheter they gave me yesterday. The machine they use is called MCS+, which are produced by a company called Haemonetics. I also noticed they had the machine connected to a UPS, in case of a power outage, so that was nice, who knows right? 😀
How it works
Once I’m all hooked up, the machine will start to draw blood from me, and separate it into three different bags. The machine separates the blood serum into one bag and blood cells to another and extracts this kind of concentrate which contains the stem cells, into a third separate bag. The process works in cycles, so it’s not continuously drawing blood from your body. It draws up a certain amount, processes it, collects the stem cells and reinfuse the rest of the blood back into your body. It does this in cycles over and over again, until it has processed a preconfigured amount of blood.
As you can see from the picture, during this first session the machine processed 8,2 liters of my blood. After analyzing the “stem cell extract” in the lab, they found out that I had harvested about 140 million stem cells during this session. Which means I have collected about half of the cells I need before I can begin with chemo.
On this last day of stem cell mobilization, they inserted a central venous catheter in my external jugular vein in my neck. The procedure is painless, and nothing to worry about.
You can take a look at the following video of how it went down.
Tomorrow they will use this catheter to harvest stem cells from my blood.
I want to add that the Russian medical staff is very talented and highly professional. I feel completely secure in their care. So if you have been worrying about stuff like this, and it’s holding you back from making the right decision – Get over it!