HSCT – Day 5-8 – Stem cell mobilization

Day 5 to 8 of the HSCT treatment is the stem cell mobilization phase. They give you a drug called G-CSF. To stimulate your body to release hematopoietic stem cells from your bone marrow into your bloodstream. These stem cells will at the next stage be harvested and frozen down. So that they can be reinfused back into your body after the chemotherapy stage of the treatment is over. This helps speed up recovery. Which essentially lower the risk of getting an infection, while your immune system is gone after the chemo has wiped it out.

Every morning during this phase at 10 o’clock, a nurse comes in and hook you up for a methylprednisolone infusion. They give you 500mg / day, and the process takes about 20 minutes. They give you this drug to suppress the immune system and lower inflammation in the body. Methylprednisolone is a drug with potentially serious side effects. But is mainly an issue during high doses over longer periods of time. This drug raises your blood sugar. Hyperglycemics can be pushed over the edge and get diabetes type 2. So it might be a good idea to get your blood sugar in check before you start this treatment. Going full keto for a couple of weeks before admission to the hospital should do the trick if you are in the danger zone. Methylprednisolone is actually the same drug doctors will use to treat acute inflammation / attacks in MS patients, but at 1000mg / day instead, so the risks we have talked about is actually higher during standard acute MS treatments.

Infusion gopnik style

Common side effects of methylprednisolone during HSCT is weight gain, bloating, light hypertension and trouble sleeping. For me personally, I noticed that I also get a raging boner while sleeping, during the whole night. But I can’t figure out if it’s the drugs or the fact that I’m in a hospital in Russia, filled with good looking women.

Injection of G-CSF
G-CSF injection

The G-CSF drug is given at 11 o’clock at night, and 3 o’clock in the morning. It’s a painless subcutaneous injection in your upper arm. It can be hard to fall asleep again after the nightly injection, so you can get a pill to help you sleep if you need it.

The sleeping pills they will give you are called Phenazepam. It’s basically a powerful Benzodiazepine or so-called “Benzo”, and if I’m not mistaken they are about 5 times stronger than Valium. This is probably why the nurses won’t let you have more than 2 pills in the room, you really should not take too much of these drugs. They are also mildly addictive, so if you go down this route I suggest to tapper of the doses while in isolation, and rather substitute with some melatonin instead. You don’t want to get back home and be addicted to Benzo’s, it will make you feel like shit. And is not a good start on your new life as MS free 😀

HSCT – Day 4 – Pre-examination results

Today I had a meeting with Doctor Denis Fedorenko, who is the HSCT Hematologist at the A.A. Maximov Department of Hematology and Cellular Therapy, at Pirogov National Medical Surgical Center. This man is a god damn hero! He is sincerely the best, most loving Doctor I’ve ever encountered. And to have him as your doctor is a true pleasure.

The one and only Denis Fedorenko, picture stolen from kickinms.com

Now for the results. My health was, in general, good. I did have a slight increase in cholesterol (probably because of my previous keto diet), and they had also found a polyp in my gallbladder that they want me to keep an eye on. They encouraged me to do a yearly ultrasound checkup in my local Hospital, but I’m honestly thinking I want to come back to Moscow for everything health related. Norwegian public healthcare is actually quite bad, but I won’t get started on that in this post.

Regarding my MR images, they did, as expected, find many more lesions on the Russian MRI, compared to the Norwegian one. Dr. Fedorenko found 17 lesions in my brain, the same lesion in my neck (which is 22 mm in diameter btw), and several lesions in my spinal cord. If I remember correctly the Norwegian doctors found about 3-4 minor lesions in the brain, the same lesion in the neck, and none of the lesions in my spinal cord. Needless to say, I’m very disappointed with the Norwegian healthcare system. I will create a blog post comparing the images when I get them digitally from Dr. Fedorenko.

Because my health, in general, is good, I am now officially approved for HSCT treatment. To be precise it’s actually called aHSCT – which stands for Autologous Hematopoietic Stem Cell Transplantation. I will cover everything about aHSCT in another blog post, but I just want to clear up a common misconception. Most people just read the title and assume that stem cells are some kind of wonder “drug” that fixes the MS disease. This is not true.

The actual wonder drug is chemotherapy. It’s the chemo that kills all the immunecells with “bad programming”, which prevents them from replicating. And this is how you get rid of the disease. The stemcells are only used to speed up recovery after the chemo, so that the new immunecells can be created from healthy stemcells with no “DNA damage”. Oh and by the way, the “autologous” part in aHSCT means they are transplanting your own stem cells that they have harvested from your blood before chemo. So there is no risk with the stem cells being rejected by the body or anything like that.

HSCT – Day 3 – Day off

On the third day of the HSCT treatment, I had the day off, while they analyzed the results from the previous examinations. I used this day to go sightseeing. Luckily for me I was able to book the amazing Alexey to give us a tour of Moscow, which I 100% recommend. I only wish we had more time with him that day, I’m definitely going to book him again the next time I’m in Moscow.

Here are a few pictures

HSCT – Day 2 – Pre-examinations

Yesterday was the “big examination day”. You see before being approved for HSCT, they will do a number of examinations to determine if you are healthy enough to go through with the procedure.

The day started with a blood test to check full blood count and to do a biochemistry screening. This was done by one of the lovely nurses at the “HSCT” department. I also did a mouth and nose swab test to do a bacterial and virus screening.

Spirogram

After this I was sent to another department to do a Spirogram, to check lung function. Next up was taking X-rays of the lungs and sinuses. Followed by ultrasound imaging examinations of the kidneys, abdomen, and heart. A Doppler ultrasound of the main arteries to check for blood flow obstructions (blood clots) was also done.

There was also taken new MR images. This is probably the part I’m most excited about when it comes to these tests. I can’t wait to get my hands on the new images and go through them with Dr. Federenko. The thing that makes these images exciting is the fact that they are much more detailed than the images taken in Norway. This is because their equipment is better basically. MRI machine “strength” is measured in a unit called Tesla. The Russians use Tesla 3, while in Norway we use Tesla 1,5. Norwegian doctors might try and convince you that “we have Tesla 3 in Norway as well. This might be true, but they only use this strength when doing MR images of prostates. So I’m kind of excited to get to know if there are more lesions in my brain/spine than is presented on the Norwegian MRI’s.

I also delivered a urin and stool sample, FYI.

HSCT – Day 1 – Check-in

As you might have figured from the title, I have decided to go for HSCT treatment to have a chance at stopping the disease. I was supposed to publish other posts before this one to explain what MS and HSCT is, but I won’t publish them before I am done fact-checking. It’s important for me to be factual, because I want to help others make the best decision based on facts, and not hopeium.

National Pirogov Medical Surgical Center in Moscow

Today was my first day at The A.A. Maximov Hematology and Cell Therapy Department, National Pirogov Medical Surgical Center in Moscow. These guys are one of the best in the world when it comes to HSCT treatment, if not the best. And have treated more than 800 patients over 10 years, with an average success rate of 85-95% for RRMS patients. Success in this regard means that after 4 years, you have remained relapse-free and in remission. For comparison, the same statistic for traditional disease-modifying drugs (standard MS treatment protocols), is 18%. Meaning only 18% of patients treated with DMD’s have remained relapse-free measured for 4 years after treatment. These medications are thus regarded as “slow-down” medication, and nothing more. In the end, the disease will catch up with you if you choose to go for DMD’s. I will go more in detail on HSCT in a dedicated post.

The room

Room overview

Every patient has their own room which they will live in during all stages of the treatment. The room contains an adjustable bed, TV, desk, microwave oven, water boiler, fridge and some storage space for clothes, food or other stuff you wish to store. You also have a separate bathroom with a toilet and shower.

The windows are locked (because this is sterile environment), and the incoming air from the vents are filtered.

First examination – ECG

On this first day, I also had my first examination, which was an Electrocardiography or ECG for short. The examination was performed by a lovely lady and consists of placing some electrodes on your legs, arms, and chest to record the electrical activity of the heart. Hopefully my heart is good enough to go through with this treatment.

How my MS journey began

My MS journey began on the 9th of November 2018, and at that time I had no clue what was going on or what kind of hell hole I was about to find myself in.

It all started with some numbness in my left leg, I didn’t think much of it and went about my day as usual. The day after the numbness had spread to my left hip which I thought was a little strange. I had never experienced numbness in that particular spot before. Actually, the word “numbness” doesn’t really explain how it feels very well for people who haven’t experienced it. It’s more like a loss of feeling, you can’t feel temperatures very well, combined with a tingling sensation and degraded feeling to touch. It kinda feels like you are carrying around dead meat outside your body, or fat in my case..

The very next day the numbness had spread to both my hands, which I will admit was a little scary. But since I’m an eternal optimist, I said to myself: “Now it will feel like I’m getting a hand job from a stranger when I do my business”, which is great or so I’ve heard! When I woke up the following morning, which was a Monday, I quickly ran to the bathroom as I always do to get ready for work. When I stepped into the shower and turned the water on I initially thought there was something wrong with the water pressure, no water was coming out, or so I thought. It took me a couple of seconds to realize the water was indeed flowing, I just couldn’t feel it on my body. This is when I realized the numbness had spread to the front of my upper body, both legs and arms.

I needed to go see my general practitioner.

Man checking blood pressure at his general practitioner.

A few days went by before I had my appointment with my GP, in the meantime my symptoms had become worse. I had gotten something called Lhermitte’s sign, which is a typical symptom of those affected with multiple sclerosis. This symptom has its name from Jean Lhermitte, a French neurologist who published an article on the subject making it known worldwide, however, he was not the one who discovered it. Anyway, the symptom causes the feeling of an electrical jolt running through your spinal cord and into your limbs, when you bend your neck forward. It feels like there is a zipper attached to your spinal cord, that is being unzipped fast down your spine. This feeling can be compared to the kind of electrical shock feeling you get when you hit your elbow, or the so-called “funny bone“.

In addition to this electrifying symptom, my hands felt very cold and my fingers were stiff especially the pinky and ring finger. My fingers had also become hypersensitive to touch, it was painful to touch things. Because I’m an IT consultant these new symptoms gave me some trouble at work, it was now painful to type on the keyboard and I kept making typo’s because I could no longer feel the keys on the keyboard. This was very frustrating for me since I’m used to typing without looking at the keyboard. I also couldn’t hold the computer mouse very well and it was seriously uncomfortable to drag my hand across the mouse pad as it felt like dragging my hand across sandpaper.

My hand grip had also become very weak, I was unable to hang from a pole with just my body weight. And I was struggling with using cutlery when eating. Using a pizza cutter was impossible, I had to use scissors with both my hands to pull off slicing a pizza!

When I explained my symptoms to my GP, he quickly made me a reference to get an MRI. Instead of waiting in the public health care queue I went to a private clinic and got the MRI done. I actually got an appointment for MRI the very same day I called them. I was eager to get this MRI done as fast as possible because I was already convinced I had multiple sclerosis, and after doing a lot of research I knew the importance of getting diagnosed early, to be able to start treatment as soon as possible to try and avoid any further damage to my central nervous system.

MRI image of a lesion in my neck.

Before I left the private clinic I got the medical secretary to burn me a CD with the MRI images so I could have a look at them myself while I was waiting for a radiologist to analyze the images and give me the official results. Obviously, as an IT consultant, I have no experience or training in analyzing MRI images, but it’s amazing what you can learn when you have access to the Internet and know how to use it to obtain information. As you can see in the image above I was able to locate a white spot in my spinal cord, that stood out in contrast to the rest of the nerve, which I thought was suspicious. This further increased my conviction of being hit by MS. A couple of days later the results were in, and the radiologist had found the same spot in the spinal cord in addition to some small spots that could indicate demyelination in my brain and CNS.

After discussing these results with my GP we agreed that the next step would be to do a lumbar puncture to collect cerebrospinal fluid from the CNS for diagnostic testing.

I will cover how this went down in my next blog post.