So of course undergoing a treatment like HSCT for my MS has raised questions from those who know me. I’ve been asked a number of questions, so I’ll try to answer some of them here.
First I’ve been asked if the procedure is legit and safe. Yes this procedure is legit. I realize many treatments for MS have emerged over the years that are not long term solution, including just a plain stem cell transplant that is a same day procedure that does not involve chemo. While some people have had success with those treatments, it’s usually short lived, others swear they work, but the science doesn’t back those procedures. HSCT is currently in clinical trials in several countries around the world including the US where it’s in Phase/Stage III right now and is set to be approved for use in 2022. The clinical trials only cover its use for RRMS and not the other types, although the procedure has proven to work on the other types as well however the success rate is not as high. Success rates tend to be around 90% for those with RRMS that are treated early on in the disease course. Could it not work for me, that is a possibility, but for me it is worth the gamble. It is offered at several places around the world: Russia, Mexico, Israel, Singapore, Germany, and the Philippines. How safe is the procedure? Well it does have a risk of death, the risk is less than 1%. Russia has had zero fatalities in treating MS patients, they have had one death for a patient being treated for Stiff Person Syndrome, but the death was not related to the treatment, it was caused by other underlying medical issues. You are at risk at catching infections afterwards until your immune system rebounds. It does slightly increase your risk of getting other types of cancer and some people have had AVN occur after the procedure as well. To me it is worth the risk. The risks for this procedure to me are safer than the risks of long-term use of the medications being used to treat MS.
I’ve been asked if I am scared going into this whole process. No I am not scared. It has its risks and I understand that, but I don’t fear anything. People all react differently to the protocol, some people have extreme bone pain and nausea during the chemo and have many side effects after treatment, others have no problems at all. No part of the procedure scares me, I fully trust the doctors. If anything I’m more concerned about flying to/from there on the airplane, I’m not a huge fan of flying and that is a lot of time on an airplane.
Will you miss your family? Well duh, that is a stupid question. Of course I will miss my family, especially my kids. When I’m gone I’ll have a 4 ½ year old and an 18 month old, I know it will be rough on them when I am gone for a month, especially the youngest one, she’s never been away from me. My oldest has spent time away at the grandparents in the past, so she is old enough to understand everything, so it won’t be as hard on her. I plan to skype with them on a daily basis when I am in Russia. Of course I will miss my husband as well, but due to work, we’ve spent longer periods of time apart than this, so it’s not a huge deal. But yes I will miss them all.
How will life be when you get home from Russia? Well recovery really varies from person to person, some people have it easy, some people have it rough. For the first month I will be staying at home and not going in public except for necessary medical needs, like blood testing. I will be wearing a mask on the airplane home and anytime I’m in public for the first month. So nobody on the plane will want to sit by me, lol. Some people end up having a fever in the first couple months when they get home, that means an immediate trip to the ER and IV antibiotics to prevent sepsis, sometimes that requires hospitalization for a few days. The house has to be kept very clean, everyone will be using large quantities of hand sanitizer, and food will be well cooked. Since we have a well for water, I will be either drinking bottled water or boiling it before drinking for the first 3 months. No raw veggies for the first three months either and sadly no gardening for me this year. I love getting my hands dirty outside, I’m an outdoorsy gal and that is what I love each year, obviously I have to modify that for this year, which is depressing, but I know that halting my MS will be worth it.
Will I lose my hair? Yep, hair is going bye-bye. I’m actually planning to cut my hair completely off at the beginning of April and donating it to a local girl who is doing a senior project for an organization called Children with Hair Loss. She’s collecting hair and money donations and will be submitting it in May. At that time I will basically buzz my hair and be rocking that look until I go to Russia, at some point in time there my head will be completely shaved since there is a 99% chance the hair will fall out. Do I mind being hairless? Well I’ve had ferrets in the past suffering from adrenal cancer that were hairless, so I guess for a while I can feel like they did. I love bandanas and have a huge collection, so I’ll be rocking various bandanas for a while.
What do you do with your animals when you get home? No getting rid of animals. I have 3 indoor cats that are almost 7 years old, they are 100% indoor and never go outside and haven’t been outside since they were kittens. Obviously basic common sense applies, no letting them near my face, no cleaning litterpans, etc. Basically follow same rules as you do during pregnancy. I also have an indoor ferret, same concept. Now I do also own goats, obviously outside animals. Basically for the first few months I’m supposed to avoid them because they can kick up dust and debris that could be bad.
Do you speak Russian? How will you communicate while you are there? No I do not speak Russian, not a single word. I do plan to learn some basic Russian words and phrases before I go. The doctors do speak English and communicate in English. The nursing staff knows a bit of English, but they do give you a sheet that lists basic words so you can communicate with them or at least point at what you mean. They obviously are used to international patients, so I’m sure over time they’ve picked up some English. But I do plan to learn some basic words in case I do venture outside the hospital during my pre-testing time.
Can you be denied treatment after going all the way to Russia? Yes you can be denied treatment, although to date only 3 people have been denied. I believe one was denied due to heart issues, one related to a tumor or cancer, and the other had mobility issues that they thought could be detrimental to treatment. They weigh the risks and go accordingly. Obviously it would be devastating to be denied, but if the procedure could kill you or you have other serious issues they find out, I could handle being denied. If you are denied they only keep the initial $1500 payment that covers the cost of all the pre-testing. Really amazing that amount of money covers all these tests, when a c-spine MRI runs around $8000 in my area. If you are approved, you then pay the rest of the fee. Obviously the fear of being denied has been heightened for a lot of people planning to go to Russia in the near future because a lady did just get denied because of mobility issues, but in all my recent medical tests in the past year I’ve been healthy and mobility is pretty good, so I guess we’ll see how it goes.
Are other international patients being treated at the same time as when you’ll be there? Yes, they tend to treat 4-5 international patients at the same time and I believe they have that many starting treatment each week, so at any given time there are patients there at various levels of treatment. From what I know right now, a lady from Australia and a man from the US will be starting treatment the same time as I will be, I’m sure there is at least one more starting at that time, but I haven’t seen that person post on the facebook group yet.
Why did you choose Russia over the other facilities? Well quite frankly if I could have qualified for the US clinical trials I would have gone that route since my insurance company is one that would have paid for 100% of the treatment, but I didn’t qualify, so I applied internationally. I did a lot of research on where I wanted to go, looked at the drug protocols, outcomes, experience of doctors, etc. and I decided that Russia and Mexico would be my locations that I would apply at. Russia has been doing this longer, the doctor has been doing it longer, more people have been treated there, and that was my first choice. I also applied in Mexico because it is closer, doesn’t require a visa, I can speak a bit of Spanish, and it seems like a good choice. Mexico however has only being doing this for autoimmune patients for around a year. There are other differences as well. Russia is 100% inpatient. You arrive at the airport, they send a driver to pick you up, all food is provided, they drop you off at the airport when you are ready to leave. The $45,000 covers absolutely everything and you can go by yourself. Mexico is done differently, it is 100% outpatient. They provide rides to and from the airport and an apartment to stay in, they also transport you between the apartments and clinic for all the necessary treatments. You do have to provide all your own food, except when you are in isolation, and you are required to bring a person to care for you the entire time. The cost there is $54,000 and you still need to pay for 6 followup infusions when you return home, which can be difficult to find a doctor to do for you. The overall protocols are a bit different but seem to have the same outcomes, although it’s still in the early stages in Mexico so not a lot of data. In the end I would have been comfortable to go to either location, but Russia was my first choice, I feel more comfortable going there, and I am content with my decision. Many people also base it on which place can treat them the earliest. For me that really wasn’t my top priority.
How did you get such an early date in Russia, compared to other people who applied way before you? This question isn’t so much from family and friends but from people on the various HSCT facebook groups. By the time I actually got all my medical records from the hospital, which was a several month battle by the way, it was November 2015 when I applied. I had seen others apply before me and were told the waitlist was 2 years out, so basically 2018 for when I’d get in. I fully expected that timeframe and was actually quite shocked when I got a response saying I’d been accepted and I’d get a cancellation date in late 2016 or early 2017. I then got contacted in the end of February asking if I could take the April 25, 2016 date, which I accepted. Russia does base dates on when you apply but also bases it on medical records, so my medical records are what determined my date. Several other people who applied around the same time as me and after me also got dates for this year. This does tend to piss off a lot of people who get assigned later dates, I understand their anger, but the doctor bases it on medical records and that’s that. Now I had also applied in Mexico in August 2015, they require zero medical records when applying, basically a simple application and that is it, so I wasn’t sure when I’d hear back from them on a date. When I applied they said you’re on the waitlist and will be contacted when dates come available. They assign dates on a first come first served basis, although I think it may also be based a bit on EDSS score. They treat 12 patients a month, all at the same time, so I think they want a variety of patients, some with no mobility issues and others that are almost wheelchair bound. When I got my date in Russia I actually emailed Mexico back and let them know to take me off the list, but I guess they missed my email because 3 weeks later I got an email telling me my date for Mexico would be this upcoming August 2016 if I wanted it. Obviously I turned it down, but it appears the waitlist for Mexico is about a year out. So yes I lucked out on my date.
Those have been the main questions I’ve been asked, if anyone has any others, feel free to ask.