Columns Engaging Thoughts – a Column by Laura Kolaczkowski HSCT as MS Therapy: An American’s Tale HSCT as MS Therapy: An American’s Tale by Laura Kolaczkowski | August 22, 2016 Share this article: Share article via email Copy article link Karen Staman and I met a while back through a National Institute of Health and Duke University research collaborative effort. She is a scientific writer by trade, which means she sits through lots of conversation and puts everyone else’s thoughts into cohesive sentences that can then be published, and she understands science in a way so many of us don’t. At a quiet moment during our first day together, she shared with me that she also has MS, but had not told her employer or pretty much anyone else, other than her family and closest friends. We met at the hotel bar that night and discussed her treatments and her efforts to remain active in her favorite sport of rock climbing, and in chasing her pre-teen children through their routines. We talked a long time, but I did not come away with the sense that she was considering taking the most dramatic step in stopping her MS — undergoing HSCT (Hematopoietic Stem Cell Transplantation). HSCT is a procedure where the doctors reboot your immune system by collecting some of your cells, then wiping out your immune system through the use of chemotherapy drugs and reintroducing your own healthy cells to rebuild your immune system. It is a much more complex process and commitment than I’ve given in these few words, and that is why I want to introduce you to Karen. It was only through later emails that her plan to go to Chicago for treatment with Dr. Richard Burt, Northwestern University, a pioneer researcher in the field of HSCT, was revealed. Karen took a number of big steps in this process, the first of which was to publicly announce that she has MS, and that she was going to try HCST. I am sure it was not an easy decision, and not one she made without investigating further. Karen did her own investigation, including accessing detailed journal articles about HSCT research, and came to the decision that even though HSCT was not yet an FDA-accepted procedure and still in the experimental stage for multiple sclerosis, she would pursue the opportunity to have it. Then she made her journey, that started in autumn 2015, public through a blog, Karen Staman: My Journey to Chicago to Get HSCT for MS. Upfront, I must share that I am not in the camp that would do HSCT — to me, the evidence as to which stem cell procedure unlocks MS is just not there yet. Then there is the mortality rate that fluctuates as high as 1 in 200, depending on which batch of statistics you read. I am more cautious, and would like to see the reproducible scientific evidence before endorsing HSCT as the answer for thousands of people. The uncertainty of HSCT was the agenda when an international group of researchers, including Dr. Burt, met in late 2015 in Portugal, to exclusively discuss stem cell research. The group’s consensus, summarized on the National Multiple Sclerosis Society’s site under the title “Promoting Clinical Trials of Cell Therapy,” includes this information: “Controlled clinical trials by investigators were deemed an optimal way to provide answers about which types of cells, which route of delivery, and which types and stages of disease, would be the most promising approach for treating MS. “A past roadblock has been that clinicians often use different treatment protocols, making it hard to compare results. Participants heard potential solutions to standardizing protocols and creating networks for centralizing data collection and analysis. “There are outstanding questions about how to track transplanted cells within the body, how to determine if cell therapy is working, and ethical challenges for cell-based therapies, including the issue of patient-funded studies and the problems of unregulated stem cell clinics.” To summarize, the experts’ recommendation is to do controlled stem cell clinical trials, with standardized protocol, in safe settings, and where they can gather consistent comparable evidence. The studies to date on HSCT have been observational ones, and not the gold standard model of randomized and controlled studies. Unfortunately, since Karen was not part of a trial for multiple sclerosis, none of her experiences count toward the body of medical knowledge and, at best, is only compelling anecdotal evidence. I don’t know if Dr. Burt is still accepting patients on a case-by-case basis if they don’t meet the demanding criteria of the trials. But this research approach — waiting for the research protocol to be designed — is not enough for many people like Karen, who feel the urgent need to seek treatment now. It has now been almost a year since this began for her and I wrote asking for an update. Was she feeling better? What was her outcome? I’m pleased to say she is feeling great and glad she had HSCT. But she also makes it very clear she didn’t feel that way for a long time. I asked if I might make her HSCT story public and share her blog link, and she was enthusiastic about this idea. I explained I have read numerous stories of people having HSCT and having these immediate miracle recoveries, which conjure up images of magic wands and unicorns, that I feel mislead people as to how “easy’’ HSCT might be. I know from discussions with people who have had this procedure, as well as a clinician who was a researcher on the HALT-MS trial, an earlier HSCT study, it doesn’t work like that. The clinician said his patients in HALT-MS had such a rough first year he was sure they hated him, but then it got better in year two, and by year three they had forgiven him for all they went through. They were, for the most part, doing great. HALT-MS had a 70% success rate of sustaining improvement over five years, but that also means 30% of the participants did not benefit from HSCT. I am also friends with a person from the HALT-MS trial who did not have permanent benefits from the stem cell treatment, but that’s a story for another time. If you have read this far, then you are really interested in HSCT and I know you will want to read Karen’s blog about her past year and what she has gone through. It is a compelling story, and she spares none of the gruesome details of tests, and vomit, and lost hair, and questioning her decision. It is also full of acknowledgement that the words of encouragement and support from her friends and family helped her through the roughest days. I hope you will read Karen’s story and return here to share your own thoughts after you have the chance to walk in her path through her writings. Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis. Print This Page About the Author Laura Kolaczkowski Laura Kolaczkowski comes from Beavercreek, Ohio, and worked at the University of Dayton for over 25 years until MS challenged her enough to go onto full-time disability. She is active in the MS community on multiple levels, and writes for her own personal blog, InsideMyStory and as a patient expert for MultipleSclerosis.net. Laura is the Lead Patient Representative and co-principal investigator for iConquerMS™, a patient powered MS research network. Laura freely admits her Liberal Arts background fuels her interest in patient engagement and empowerment and she struggles with the science of MS. Tags stem cell therapy Comments Michele Morales Thank you for the article Laura. I am sorry, but I do not agree with you regarding HSCT. I myself underwent HSCT beginning in March 2016 after doing as much research as I could and following dozens of others going through HSCT. I could be wrong, but when I read your article and others like it, I get the feeling that the person writing it has no idea what it is like to be told there is nothing we can do to stop your MS. All we can offer you are a lifetime of dangerous drugs that might slow the progression. When a person has a mild relapse once a year or once every 5 years and during that time has a limp or fatigue that dissipate when the relapse is over, I can maybe understand not being interested in HSCT. When a person has gone from not knowing they have MS to a 6.0 EDSS in 3 short years, losing your hair temporarily, and 2 days of nausea (which is what I had - one day of nausea and another day of nausea the following week), is a very small price to pay for a 90℅ chance of stopping the progression for RRMS and a 70℅ chance for Progressiv MS. Stopping the progression is why HSCT is performed and every patient knows that going in. "Substantive improvement" as you say, at 70% is a "bonus" of HSCT, and again patients know that improvement may or may not happen. Stopping progression and lessening ones disability are two separate issues. Repairing myelin is a separate issue and never expected post HSCT. Nonmyeloablative HSCT has a mortality rate of .5%. The rate you quote is either from 15 years ago or you are quoting the rate of HSCT for cancer patients. Reply Laura Kolaczkowski You are right - my experiences with MS are different than what you or anyone else goes through. I do take a DMT and find little that is 'dangerous' about these pharmaceutical agents. If only a limp and a bit of fatigue were my only challenges, but that's for another column someday. You don't say if HCST has improved your MS, but I am going to assume so and I'm glad it worked for you. Reply Dave Kempker Laura, I have just started my journey with HSCT, I have applied (that even seems weird to me,) with Dr. Bert (Burt,) at NW, and am waiting on a response. How long did it take? How much did yours cost? How would you rate the experience? Dave Reply Laura Kolaczkowski Dave, I have not had HCST, I just wrote about it. Karen Staman can answer your questions via here blog. good luck! Reply Eric Woodard Does diet work for people with Ms to restore lose abilities and to control the disease is there any proof that diet may or may not help. Reply Kevin Keplinger Hi Laura, I'm a "Buckeye" too. I live in Canton. I just completed HSCT at Raffles Medical Center. I wasn't able to get into Chicago so like many other MS patients went else where. Like you, I was concerned about the chemo, scared actually. What a mistake that was!!! As most HSCT patients will tell you, the only thing I regret is not having it done sooner!!! I would have had I known about it. I must ask why the NMSS, MSF, MSAA & the rest of the MS Society's aren't informing their members of HSCT as a treatment option?? As someone said in one of the HSCT forum's, "if HSCT were a treatment for AIDS, it would have been approved a long time ago"!! As a fellow "Buckeye" were almost neighbors, so I'm available if you'd like to talk about HSCT. Best wishes, Kevin Reply Karen Bludworth Hi Kevin - congrats on your treatment. I was wondering where is Raffles Medical Center? Was it part of a trial? Thanks for responding Karen [email protected] Reply Laura Kolaczkowski Karen, Raffles is in Singapore. I just watched their YouTube video, and although it doesn't talk about cost, it does say you will be ready to return home after 10-12 weeks of being in their care. -Laura Reply Eric woodard How much does it cost to have the treatment done Reply Laura Kolaczkowski Eric, I looked at your question and tried to find a good figure to share. It appears that this depends on where you go -but seems to average right about the $100,000 USD mark. That's a guesstimate on my part and maybe someone who has had it done will come by and share their medical bill costs. Reply Hi Eric, I know Moscow charges $50,000. Israel, more than $100,000 I believe. Others I don't know. Reply Eric woodard Thanks for the info do you know about any where in the US. Reply To the best of my knowledge and belief, the only place providing HSCT in the US is Northwestern in Chicago. ellie The private pay rate for chicago is $125,000. Some insurance policies cover but usually after appeals. Cost is $50,000 in Moscow and, I believe it is similar in Mexico. Gary La Joya Ca, $125,000 as is most places in US Laura Kolaczkowski The MS advocacy organizations do talk about HCST and are funding research to further prove its efficacy. Unfortunately stem cell research in this country got quite tied up in politics a few administrations ago, and the delays were frustrating. If you follow the link in the story you can read more about the research process now promoted. I'm glad you found relief from HCST. -Laura Reply Ellie It's true the NMSS does have information about HSCT but they are NOT funding research in the US. Canada's MS society on the other hand funded the Ottawa trial. I had HSCT in Chicago with Dr. Burt in June and I've already had a remarkable transformation as has everyone else I have spoken with. I was walking with a walker, incontinent, cognitive issues, muscle spasms, vertigo, etc. I'm now walking independly and don't need to hold on to the railing anymore for the few steps I have in front of my building, incontinence is gone, muscle spasms minimal and cognitive and vertigo clearing up. HSCT is absolutely the closest thing we have to a cure and I think the majority of those of us who have had it will tell you the same thing. My blog is elliehsct.com if you would like to read or follow it. I'll be posting another update on 9/6 which is my 3 month point. Reply Cyndi Benedict Ellie, I am so glad to learn your are doing better. I am seriously considering HSCT. Can you provide additional information about how long you had been suffering from your MS debility systems prior to HSCT treatment and how you went about applying for/seeking treatment from Dr. Burt (including how long it took for you to be accepted and whether there were any automatic dis-qualifiers for treatment with Dr. Burt)? Thanks! Reply Ellie Sure, I was diagnosed in March of 2003 though I believe I've had it since around 1996 as I had mono at that time and never recovered. I was then (mis)diagnosed with fibromyalgia. I took Avonex for 12 years and then the drug lost it's efficacy. It never occured to me that could happen. People think they're fine on their drugs but eventually that drug won't work anymore and by taking drugs you're choosing between which vital organs you want to place at risk. I applied for Dr. Burt in November of last year and received HSCT in June of this year. It didn't take long to be approved maybe less than 2 months. The biggest issue is insurance but I'm lucky and have Cigna which largely covers. As far as automatic disqualifiers you need to be under age 55 and you should have failed at least one DMD and have active lesions. However, at this point as the study is nearly over I think he is more likely to take more people "off study" so maybe he will be more flexible. But keep in mind nobody should ask to be treated "off study" as that is truly a gift only he can offer and he will if he thinks he can help you. It's expensive but he's the best and I would mortgage my house and have it done again if I didn't have insurance coverage. Seriously, run, don't walk....apply to Dr Burt at Northwestern while you still can. Good luck!!! Cyndi Thanks for your response Ellie. Good to hear you are doing well. I will continue to follow your progress on your blog. Best of luck to you. Reply Eddie Nash My wife had HSCT for CIDP and had an almost immediate improvement that the writer acts like is fiction. It varies from one patient to another. Many have very good results so please don't be such a detractor when you state you did not personally go through the autoimmune conditions or the treatment. 7 years now for my wife and no drugs now needed. Reply Susan Kiechel I have CIDP and I've been trying to reach someone who's gone through the process completely. Would your wife be interested in giving me her perspective on how things went and what her final outcome is? SCT for cidp is not new at all. The first casebwasn't Dr. Burt- it was in Sweden in 2002. Dr. Burt's original patient was completed in 2006. She is over 12 years out and is required no additional treatment for her CIDP. SCT for me isn't an option, it is the only option I have left. It's either that or palliative / hospice care. Meredith McElroy I’m wondering how you are doing now? (2019) My husband is looking into this treatment for RRMS. Best Wishes! Reply Dave Kempker Kevin, I agree, I am 3+ years in, and other than filling big Pharmas pockets, don't see a whole lot of movement, not real happy with the FDA either. I am tired of MS and tired of the entire process. Everyone says, 'we want to make sure any treatment is fairly innocuous,' in the meanwhile, I die a little each day. HELP Any advice on getting into a treatment? Dave Reply Eric woodard I live in Akron and I would like to know if it was worth it and how do you feel and how have you improved Reply Marcy I want to have HSCT treatment for MS, but I am terrified. I got information from a clinic in Mexico. Can anyone kindly give me any advice, please. Reply Melanie alexander Hi Kevin I am from Australia and currently investigating raffles Singapore HSCT would you be willing to be contacted directly Melanie Alexander Reply Joseph C L Anyone know if any places in CA, or near California take insurance for HCST? I've had MS for some time, probably almost 15-20 years but was only diagnosed two years ago. I'm doing pretty bad these days, mainly tired, vision is blurry, head fuzzy, pains in my legs and back, and did I say I'm tired. Any help or info is appreciated. Thanks! Reply Jana In Mexico, Ruiz clinic charges $50,000. It includes hsct, transportation and housing. Reply Allen I have just completed HSCT. The recovery has just started and i know it is very long with no guarantees. Considering the scare tactics I was fed by my neurologist, first about HSCT and doing it outside of the country, I'm happy I did it as many others. And I am obviously not coming back in a body bag as I was told... This is where the neurologist wasn't showing care and concern for me, but plainly a lot of them don't want you to do it. Be it their lack of understanding and willingness to learn, or the fear of potentially losing a patient for because we might actually get better, there is no need to be so rude about it. He quoted similar statistics as the article, so clearly there is much misunderstanding about the procedure by many. Stem celLos havent been proven to matter as much, besides to aid your white blood cells in faster recovery. The main player here is chemotherapy, which suppresses your immune system and hopefully reboots it to a non damaging one. Non-myeloablative HSCT is not as strong as the full myeloablative or HSCT for cancers. Not to say there are no are no discomforts, but I and many others haven't experienced any. I would do full myeloablative in a heartbeat even with a risk it carries, because it is extremely successful in stopping of progression. But I guarantee that nobody will die of HSCT performed in Chicago, Russia, Mexico,etc, because the procedure has been adjusted over almost 20 years since it was first tried for MS to be better and safer. As witnessed by thousands that undergo it worldwide. The risks are much higher with some DMDs, PML, high prevalence of a secondary autoimmune disorder, leukemia, thyroid issues..? I took those risks already with no benefits, so HSCT didn't scare me at all. Only time will tell if it worked, I'm convinced it will better than any other choices we have. The sooner you do it the better and the better outcome will be. I'm happy I did it and would do it again, happy to see it becoming less of a taboo topic for autoimmune conditions, it will help even more when people learn more facts about it. Stay strong and keep fighting! Reply Hi Allen, your comments about the safety and efficacy of HSCT are exactly the same points that I have been making in my MS News Today column. Reply Cyndi Benedict Allen, can you tell me what the difference is between Non-myeloablative HSCT and full myeloablative HSCT and why one is used/preferred over the other? Reply Allen Hi Cindy. Myeloablative completely eradicates your immune system, it is done inpatient at hospitals because patients need to be completely isolated while treated. It carries a higher risk, albeit much safer than in the pasI, but I believe a higher efficacy as well for all types of MS. After Myeloablative you have to get completely rrevaccinated. Your immune system is new and it won't have the memory to potentially restart wreaking havoc. Non-Myeloablative is considered safer, easier, cheaper and is a preferred HSCT. It can even be performed outpatient very safely when patients take precautions. Only reason I said I would prefer Myeloablative is due to my higher disability and EDSS score, just to be safe. But I'm still glad I had the opportunity to do the non-myeloablative, it is proven that HSCT is presently the best chance to stop the progression of this terrible disease. Reply Cyndi Thanks so much Allen. Your information and explanation is most helpful. I have had MS for over 30 years and have only experienced a significant physical decline - which has now prevented me from working - in the last 4 years - so I consider myself one of the "lucky ones". Still, now that I'm there I would do anything to stop further progression/deterioration. As I'm approaching age 60 I don't know if I will be excluded from the HSCT option. Sad if true as other than having MS I'm pretty physically fit (or WAS I should say). Thanks again and all the best to you in your journey! Reply Allen Hey Cindy, sorry been busy to reply again. No, at 60 you would still qualify at all HSCT centers. Even Chicago is 65 I believe. I would strongly suggest you look into applying to Northwestern. The point is that even if you're still low on the EDSS scale then there's a very high chance that HSCT would ensure you remain there, or possibly even reverse some damage. Otherwise you never know when MS might turn ugly, I wouldn't take chances. Everybody I know that went through HSCT, irrelevant of their condition prior to it, always says I wish I knew about this before or did it sooner. I would strongly suggest you apply to Chicago for the start, and pursue it anywhere else. When chemotheraspy is mentioned people think of cancer and get scared. But HSCT chemo is lighter and I know you'd do great, especially if you're still that healthy. It will pay off! I really hope you get to read this. Dave semple We have great ms doctors in Canada and the United States and we who have ms are on the net daily looking for results I'V taken the lemtrada treatment and know the concerns expressed about it . Allow our doctors to treat us and extend the research so more can be done . It is my body and I want the decision making to be with me and my doctor and accept the risk I don't want to go to out side of my safety circle . If we die at least we are surrounded by friends and we further the research. Great success at Stanford using mice I would volunteer to be a rat treat this as an emergency not a lab experiment Reply Eric Woodard Does HSCT work for people with progressive ms or not because I am hearing some say yes and some say no to the question. Reply Hello Eric, as you say opinions are divided but in the course of my work as a journalist with MS News Today I have talked to many people with progressive MS who are happy that HSCT has stopped the disease getting any worse - and that is the main aim of the treatment. Those who report improvements beyond that appear to have relapsing MS. I hope this answers your question. Reply Eric Woodard Thanks for the quick response to the question. Reply Susan Metzger Can you tell me if you feel Lemtrada helped you? I am considering this treatment but reading the potential side effects is rather upsetting. Any information from you would be greatly appreciated. Reply Dave I have had three treatment and it has slowed the progression of ms. You have to go slow in recovery results take time But it is availed across Canada in our medical system if your doctor is recommending it do it Reply Laura Kolaczkowski As you can tell if you read all of the comments left on my article, including those being left by another MS columnist for Multiple Sclerosis News Today, there is no consensus on this procedure and the estimates of costs vary widely as do the preferred locations. It appears it is most effective on people with a low EDSS score, meaning they have not progressed far in their disease and it is able to halt the progression. That would mean RRMS is the best candidate, but it is not the only one. People with PPMS are also trying HCST with mixed results. The repair of nerve damage is a slow process and can take a long time - this type of nerve repair needed for MS does not take place overnight with HCST. as for erasing lesions, again that is a bit misleading because lesions are actually scars, and if you think about the scars on your external body and how they never really go away, that is the same for the MS scars on our brains. They may improve some, but they are there. The age range - there again seems to be a wide range of thinking as to who would be a good candidate to try this and it is site specific. Insurance coverage? In Karen's case (I hope you read her blog and didn't just assume what it said) her private insurance did cover HCST. If you want to learn more about HCST and its possible use for yourself, you need to do your own research - don't just take the word of others or those of your own neuro or the possible HCST doctors. Think for yourself and make an informed decision in consultation with your own family. Good luck with whatever choice you make, Laura Reply Kim Good morning! I was diagnosed in 2002 with RRMS and have been on three meds...tysabri being my last. It has helped but, I am getting a lil bit scared since I have been on it for so long now, going on 5 years. I'm afraid that I'll turn out being positive for the jvc virus and can't have it. So far it is the only med that had worked. I'm 43 with a 5 year old and I'm terrified that my ms will soon worsen and I won't be able to care for him. The cost is an issue since I live on disability. Do any of you know of a foundation that may help?! Thank you! Reply Helena Hi Kim if you live in USA and have Medicare it covers most of it definetly reach out to Northwestern hopital. WE did a fundraiser with church which help us rais money. Also if you Live n ILlinois there is financial assitance program that patient can qualify if insurance pay majority of it the assitance program picks up everything else that remaning. Reply Giovanna My daughter is 26 years old. Has rapid cycling bipolar and MS diagnosed last year 2016. She is on Gilenya. Does anyone know long term effects of this drug. Her neurologist is against stem cell treatment and we cannot afford. My heart says to try get funding and catch early We live in Australia and people travel from here to have the treatment. I have fibromyalgia and find energy to even research hard. My 19 year old son has Aspergers and my husband O C D . But I would give anything to cure my daughter of MS. Such an aweful condition for people to endure. Wishing you all a miracle cure discovered real soon ? Reply R farmer Get book Cure Diabetes, parkinsons and Chronic Disease from amazon. Reply Carolyn I have been on ocrevus for 2 years I have right foot drop & weakness b/l legs I can’t get out bed without help Ppms diagnosed 2011 Would I benefit with hcst,”? Any info appreciated Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
April 18, 2024 Columns by Benjamin Hofmeister Learning how to write a ‘SOAP’ note feels different after an MS diagnosis
April 18, 2024 News by Marisa Wexler, MS AAN 2024: Sustained myelin, nerve cell gains with long-term CNM-Au8
April 18, 2024 News by Lindsey Shapiro, PhD AAN 2024: Ocrevus benefits Black, Hispanic patients same as whites
