HEMATOPOIETIC STEM CELL TRANSPLANT (HSCT) for MULTIPLE SCLEROSIS
This treatment is designed to reset your immune system and halt the progression and activity of multiple sclerosis.
My own stem cells will be collected and frozen before high-dose chemotherapy is given, and then returned to my body intravenously, after the high-dose chemotherapy, to assist in the recovery of the immune system that was destroyed.
For approximately four days (twice a day), I will be given injections to stimulate my stem cell growth. The process of causing greater numbers of stem cells to be present in the blood stream in order for collection, is known as mobilization. The most common side effect of the mobilization process is mild-to-moderate bone pain or fever, which can often be controlled with Tylenol.
Apheresis (Collection of Stem Cells)
Apheresis is normally a painless procedure, however, back and hip pain have been reported. The collection of stem cells takes approximately two to four hours for the procedure. My blood will be withdrawn through a catheter and circulated through a cell-separating machine. This machine separates and collects white blood cells, including the stem cells, along with a few red blood cells and platelets. The remaining blood cells will be returned to my body. There is only a small amount (several cups) of your blood in the separator machine at any one time. Your blood is returned to you at the same rate it is removed. After the cells are collected, they are frozen and stored under special conditions until they are needed for my transplant.
Approximately four days of chemotherapy will be utilized to wipe out my existing immune system. Bloodwork will determine when the immune system has been sufficiently “shut down” in preparation for the stem cell transplant. At this point, the status of my isolation will be raised and only doctors and nurses will be permitted to enter my room.
Stem Cell Transplant
After the high-dose chemotherapy is completed, my own stem cells will be given back to me. There are few side effects to this procedure. It is very much like a blood transfusion. You may notice some chilling, nausea, fever, cough, flushing, headache, abdominal cramps or diarrhea. The nurses will give me medication to decrease these effects.
Although a stem cell transplant sounds dramatic, the actual procedure is simple. The stored frozen cells will be thawed in warm water, and infused back into my body.
One to three weeks following my transplant, signs that my stem cells/new immune system are growing (engrafting) and beginning to produce blood cells are expected. This “new” immune system will have no memory of MS. As this starts to occur, I may notice aching in my bones, especially my pelvis, lower back and thighs. As my blood counts begin to rise, my white blood cells will start to fight and prevent infections. Soon after this occurs, I will be released from the hospital.
It takes an average of 12-18 months to see the complete benefits of this treatment, however, some patients have continued to see improvement for up to five years post-transplant. In addition to halting the progression and activity of their MS, 80% of HSCT patients see a reversal of 45-80% of their pre-existing symptoms.
You certainly continue to be an inspiration! Keep up your hard work.
Hi, iam PPMS and I want to set up a site like this in the UK, but don’t know how ? Any info. greatly appreciated. Wishing you well, Chris.
Hi, Chris! I created this blog site on http://www.wordpress.com. They are free unless you want to upgrade and there are tons of designs to choose from. Many others who have had HSCT have used the same site to create their blogs. It’s relatively easy and there’s lot of “help” on the WordPress page to get you through creating the site. Once you finally get it set up, it will all become second nature. Best of luck to you.
Or you could register your own domain (cost is minimal) and use a free WordPress theme to set up the site. My own website is incomplete, but that’s why I’ve done – and amongst other things, I aim to give advice to people who want a professional stand-alone web site that will attract traffic and rank with Google etc.
@ Brooke – I’m ghostwriting an article focusing on you that I’ll be posting on http://www.stemcellsconsulting.com next week. I’ll send you a link.
Penny, thank you so much for your advice and I’m anxious to see the article that you are writing. I actually do own my own domain name…www.msslick.com. It reroutes to the WordPress site. I just haven’t taken the time to change it. 🙂
I’ve sent it to my client for approval; I can email it to you to look at if you like. Just let me know the address.
Hi Penny, my partner has early signs of MS. She was diagnosed some 5 years ago, she has pain and numbness in both hands and quite tender on the left hand side of her body. Ingrid is 50 However I feel we would like to try HSTC before things progress further. The only problem is nobody in Australia will provide this treatment, my question to you please Penny do you have anybody in the world who I could talk to about this treatment.
Kim, did you see the 60 Minutes Australia segment last night about HSCT? Feel free to ask me any questions that you have and make sure to read through my blog and the blog of my friends who have had HSCT in Russia. Their blog sites are listed in the HSCT-Global section of my blog at the top of the page.
Dear Kim Obst,
I went on a Facebook page of Aaron who has MS in Australia. Hi went to Russia to have his stem cell transplant. Please go in his Facebook page and review:-)
Yes. I am very familiar with Aaron’s story. Aaron has a very aggressive form of PPMS and was already rather advanced in his disability when he received his transplant. Unfortunately, HSCT did not halt his MS. The earlier you receive HSCT, the better your outcome.
Kym, Brooke is the person to talk to !!! Brooke do you have a link to the Aus segment? Hope you are doing well.
Yes, I do. Make sure to view Part 1 and 2. It is fabulous! Here it is: http://sixtyminutes.ninemsn.com.au/videoindex.aspx
It is, Scott. It really is.
hi mate my name is Andrew Mowbray and iv been trying to arrange this procedure for my partner she has RRMS but i have tried to call Moscow and sent emails with no reply from the hospital. do you have a contact i could try please.
Andrew, Dr. Fedorenko can be reached at firstname.lastname@example.org, and the phone for the hospital is 7-915-290-00-67. I can tell you that given the recent media attention regarding HSCT in Moscow, his usual time to reply (5-7 days) may be delayed. He is very diligent about responding to his e-mails. Don’t worry. He will contact you.
We are looking for HSTC treatment for our son. Can anyone tell me which is more efficient? Myeloablative or non-myeloablative?
Manu, I highly recommend the following HSCT FB group to find out detailed information about the myelo vs. non-myelo debate. it is a very personal choice and many factors play into the patient’s decision. I hope you find the answer that you are looking for. Best wishes. Here is the link: https://www.facebook.com/groups/149103351840242/
My 26 yr old daughter Emma has just been diognosed with MS , she is starting her treatment of capoxone tomorrow . I watched 60 min and then started to search. I am desperate it get my daughter all the help she needs , she has also suffered terrible trauma in the kast year loosing 2 bsb use and never bring able to conceive again as they have now removed both of her tubes . This has debased my daughter who only dream was to have babies she would be am amazing Mum. Then after that after suffering optical nuritus they started to investigate for MS her last MRI has shown 3 more legions have appeared in the last 12 months since her last MRI. I watched tonight with so much hope & sadness at the same time as I know this must be a very expensive process . And of course we have no money . I am wondering Kirsty if there is any way you can help or suggest how we can come up with the funds for the stem cells treatment in Russia . My daughter has suffered so much in her short life and I just want her to have the quality of life she deserves as a beatific soul at 26 . I ANSI full if hope for her. You are such an inspiration and we would be so grateful for any information and suggestions from you with your experience . We do not even have family to ask or asessts we could sell our life is living week to week and I have just lost my job of 7 years as our funding has been taken from our program. I have helped people all my life to do better and supported them to learn how to create better lives for them selves. Now I need to access this help for my beautiful gentle loving caring daughter . Kindest regards kerry
Kerry, I am Brooke Slick, a friend of Kristy’s. I also had HSCT done in Moscow. I am from the United States. Here is a message from Kristy and a link to her blog:
Thanks for sharing my blog 60 Minutes Australia. If you have MS, please contact me via my blog if you are interested in HSCT anywhere in the world. I am happy to give my advice, and I want to do all I can to make sure you are giving your money to reputable facilities- not all overseas stem cell treatments are the same. A good general rule is, if the facility comes to you (posting on threads like this or on other MS pages) they need to be scrutinised carefully. Almost all reputable HSCT practitioners never cold-contact potential patients. Do not waste your money going to the wrong facility!
I have just tried to send a email to dr Fedorenko about my son to get treatment using the email link given in the reply but it was sent back. So is there another email address for him could someone please help us. Kerry
His hospital email address mailbox is full. Please try email@example.com
My partner has a very severe strain of relapsing-remitting MS and has had to learn to walk again twice in the last few years, while this has been very difficult, the positive is that she has recovered quite well from the attacks.
She is 23 and all the research I’ve done indicates that the best time to take on this treatment is early on. In all my research I haven’t been able to find any details on who to contact and what steps need to be taken to apply for this treatment.
We will speak with her neurologist within the next few weeks to discuss, but was hoping someone could reply with any details that would help with arranging to go ahead with the treatment.
Thanks for taking the time to read my message.
Chris, please start by going to the following Facebook group and joining. There are many facilities throughout the world. You need to do as much research as possible to find out which facility is the right one for your partner. You will find a plethora of useful info on in this FB group. If you have any additional questions, feel free to ask.
Hello, I am Kelly a 39yr. old mother of 4 wonderful childern, wife and just now slowing loosing my 16 yr. battle with MS. I have been on EVERY FDA approved medication out there and was awating the next to be approved Lemtrada and then it was like God anwsered my prayers when I was sent your story on FB! I contacted Ms. Wood from your story to get your email and she reffered me to your blog. I am looking to get information on how to get this started. I do not have the funds avaliable but I live in an AWESOME community that has supported me for the last three months since I have become homebound and I know they will help me raise the funds! This is a link of an article that the local paper wrote about me. http://www.pleasantonexpress.com/news/2014-04-30/Living/Pleasanton_MS_patient_speaks_out_on_FDA_decision.html
I really look forward to hearing more about how to get this started! I have hope again for the first time in a long time! Sorry my computers skills combined with wonderful eyesight, and the overwelming loss of feeling in hands makes it hard for me type these days so I hope I got my point acrossed. It only took me an 1 1/2 to type this!! LOL that is good for me these days!
Hi, Kelly! I think you’ve come to the right place and that you are on the right track to get your MS halted. First off, I would start by reading my blog. You can start off slow by reading the “before” HSCT post from December to April. It includes information on how I fundraised and my approach to letting the world know what the heck I was doing. Then, starting the last week of April, 2013, I was admitted to the hospital. The next 5 weeks of blog posts include the treatment and what it entailed. In the meantime, there are two Facebook groups that I highly recommend you join. The first one is the general HSCT group which covers the science behind HSCT as well as all of the available HSCT facilites throughout the world (the number is increasing). The second group is the Russia-specific HSCT of which I am one of the admins along with Vicki Wilson, who was also in our Dallas story, and two other Moscow veterans. I will warn you that the wait to get into Moscow is approaching 2 years. However, there are other facilities where you may meet the criteria and there are more opening in the near future. Here are the links to the two groups and, if you have any further questions, feel free to contact me. Best of luck to you with your adventure!
General HSCT group: https://www.facebook.com/groups/149103351840242/
Russia HSCT group: https://www.facebook.com/groups/404629779644453/
Its an amazing, remarkable story. I am Briar Packard in New Zealand and have ms.
I am keen to know more. Where prceedure done and cost.
Brian, the best place to start is this Facebook group which covers the science behind HSCT as well as information on all facilities around the world that offer it and how much it costs. Here is the link:
Hematopioetic Stem Cell Transplant – MS & Autoimmune Diseases
What effects of the chemo did you experience after 4 days? Any hair loss?
Yes. The chemo drug, cyclophosphomide does cause loss of hair. It starts to grow back in about 3-4 months. I had a very easy time with the chemo infusions. They are very good at keeping ahead of any possible symptoms with medications to prevent such symptoms (nausea, vomiting, etc.). I hope this is helpful.
Are my own stem cells in my ms body able to build a new immune system with no memory of MS. After reading HSCT procedure
MS does not reside in are stem cells. It resides in our T cells which will be eliminated by the chemotherapy. Your new T cells will not have a memory of MS. Therefore, your myelin sheath will no longer be getting attacked.
What is the effectiveness of NM HSTC beyond 5 years? All the studies and papers I have seen on the net talks about 5 years effectiveness. Is there someone who is symptom free (NEDA) beyond 5 years after the treatment?
It’s not so much about symptom free as it is progression free. The primary aim of this treatment is to halt the progression of the disease. Any reversal or improvement in symptoms is completely random, although people who have the treatment done earlier in the disease course are more likely to see positive change in their condition. I am over four and a half years post transplant and progression-free.
Thanks brookeslick for your prompt response. All the best to you!
Same to you.
i have the same question as I believe ISK66 is asking that is what is effectiveness of non maylo HSCT beyond 5 years as most of the stories and studies talk about 5 years progression free and not beyond that. Anyone has any long term progression free experience say beyond 10+ years or more. Asking this because there is a fear that MS bounce back with different intensity in many HSCT treated folks after few years……thoughts / comments. Thanks Mike
Well, that is likely because the number of HSCT patients has increased largely over the last 4-5 years mainly due to media coverage. The percentage of patients beyond 10 years are very slight in comparison to 5 and under. There are definitely patients close to 10 years out who are doing just fine, just not as many of them because they don’t exist.