My fight against MS

Leanne Lockhart shares her personal journey and some of the challenges she faced after being diagnosed with multiple sclerosis.

I was diagnosed with multiple sclerosis (MS) in January 2015 and spent a lot of time researching what treatments are out there besides having to take disease-modifying drugs, which do nothing to halt the disease, have horrible side effects and do goodness knows what damage to your body.

Haematopoietic stem cell transplantation (HSCT) was the one treatment that made sense.

It ‘reboots’ your immune system, rids it of any history of MS. HSCT is the only existing scientifically proven treatment currently available that halts the progression of MS. In a nutshell: Chemotherapy wipes out your long-lived T- and B-lymphocytes that carry the faulty memory of MS.

They are replaced by naïve, unprogrammed lymphocytes generated by the bone marrow. The stem cells don’t cure the patient of MS, but instead they rescue you after the chemotherapy. Therefore, no chemotherapy equals no cure.

On December 2, 2016, I submitted my application to Dr Denis Fedorenko at the Department of Haematology and Cellular Therapy, National Pirogov Medical Surgical Centre in Moscow, Russia. On September 3, 2017, I was given an admission date of June 13, 2018.

Why Russia? Dr Fedorenko is one of the leading specialists in the state-of-the-art treatment of haematological, oncological and autoimmune diseases. He has conducted HSCT on MS patients since 2005.

I know that a few people have had HSCT in South Africa, but I wanted to be treated at a facility with a track record of treating people with MS – a place that has a proven protocol in place for MS patients and has treated 100s of patients successfully over a number of years.  In fact, Dr Fedorenko has treated more MS patients than any other doctor in the world that offers HSCT for MS.

My sister Glenda accompanied me to Moscow. She was amazing and extremely supportive. She managed to survive 30 days catching trams, living in a hotel and mingling and shopping with the locals. Thank goodness she didn’t learn how to spit like the locals!

The first three days were spent undergoing tests and MRI scans to ensure that there were no other underlying issues and that my body could take the ‘hammering’ that was to follow.  Tests passed, MRIs showed many more lesions than what had been identified by the machine on which I had my previous MRIs.

Treatment

Treatment started on Saturday, June 16. I was allowed out on the Friday evening and Saturday after the steroid infusion, so I managed to get some sight-seeing done. Moscow is truly a beautiful city with amazing architecture. Normally patients are allowed out during the four-day stimulation period, but because my veins don’t like needles, I had the PICC line (my bling-bling) inserted three days early.

For four days I received steroid infusions and G-CSF stimulation injections to stimulate the bone marrow to produce stem cells and release them into the blood. My stem cells were then collected via a machine called an apheresis machine or cell separator. The machine is hooked up to the bling-bling.

Your blood circulates twice through the machine and the process takes five-and-a-half hours. You can eat and drink but cannot get out of bed or use your muscles to turn over, so you have to wear a paper diaper! Unfortunately, halfway through the process the clever machine detected a clot in the plasma bag and shut down the process, so the following day I was again attached to the machine for another five-and-a-half hours.

Before chemotherapy, a new PICC line was inserted – a much softer one that made it easier to sleep – and my head was shaved. What a liberating feeling: part of the old me gone, getting ready for the new me! For the next four days it was chemotherapy and a lot of supporting medication.

Not sure what I would have done without ‘Dr’ Glenda’s support during this time. According to Glenda, it was during one of these days that I told her I had enough and was going home!  But I survived. After a day’s rest I got my stem cells back. The procedure took about 15 minutes … 15 intense minutes and not for the faint-hearted.

As soon as they started, I experienced the taste of tomato sauce in my mouth, followed by pins and needles throughout my body and intense pressure on my chest. The pressure increased to such an extent that I actually felt as if I was going to pass out.  Dr Fedorenko kept on saying, “Another 10 seconds and then you can have a little rest …” After a short rest they continued with the last bag.

During the entire process my vitals were continuously monitored and Dr Fedorenko reassured me that I was doing well. Before I knew it, everything was finished. I was exhausted but so happy, as I now have a new baby immune system with no history of MS…

My new birthday: June 27, 2018

After a few hours’ rest, my stemmie sister from the United States and I were joined by all the other patients who weren’t in ISO at our Stem Cell Party. Dr Fedorenko gave a very informative yet personal speech, followed by the presentation of my “new life” pin.  I then emptied the liquid nitrogen that had been used to freeze my stem cells. After a huge hug from Dr Fedorenko and a photo opportunity, everyone tucked into the cake that Glenda had purchased from the local café.

The next ten days were spent in isolation. The room has double doors, double windows (that don’t open) and an air purification system … No germs allowed. During the isolation period there is no showering or brushing of teeth. You are given a stash of “vodka” that you use to wash yourself. One bottle is marked “body” and one marked “private”, and you get a pink mouth wash. I wasn’t allowed to wear my own clothes and wore a “karate” outfit that was changed daily.

While in ISO, bloods were drawn daily to check haemoglobin, leukocytes and platelets. I also received a daily injection to get my new baby stem cells to increase and make their way from my blood stream back into my bone marrow, and supporting medication. Platelet infusions were given when the levels dropped too low.

I battled to eat after the chemotherapy and had a lot of stomach problems that I was told was normal. Did you know that when the lining of your intestines comes away it looks like a snake that has shed its skin?! By the evening of day six of my new life, I developed a temperature and quickly deteriorated. Thank goodness I was in a world-class facility with the amazing Dr Fedorenko.

Through the fog I saw a room full of machine and doctors. The most loving nurse, Olga, held my hand and every time I surfaced from the fog, I had a picture of my grandchildren shoved in front of my eyes and heard her telling me to fight. By the morning the worst was over, but I had to stay attached to monitors and oxygen for 24 hours and was given additional medication and antibiotics.

On July 8, my leukocyte level had risen substantially and I was allowed out of isolation. Glenda could visit and I could wonder around the ward and go for a walk in the gardens as long as I wore a mask. By July 10 I received a five-hour infusion of Rituximab to destroy both normal and malignant B-cells that have CD20 on their surfaces.

Rituximab is a chimeric monoclonal antibody against the protein CD20 that is primarily found on the surface of immune system B-cells. When it binds to this protein, it triggers cell death, so, any rogue B-cells that survived the treatment thus far were destroyed. Finally, on July 13, Glenda and I left Moscow.

The flight home was uneventful and I managed to sleep quite a bit. Since being home I have had some ups and downs. They say that recovery is a rollercoaster. It is now 204 days since I received my stem cells and although I have days when I feel yucky, they are fewer by far than the number of days I felt yucky before HSCT.

Read Lockhart’s story in detail by by clicking here to visit her blog. You can also join her Facebook group here to learn more.