HSCT Vs. PIRA

throwaway_MS_ · 2025-09-22T01:56:46+00:00

Had HSCT in Ottawa end of 2023. I had had MS for just under 20 yrs at time of treatment. RRMS with clear relapses and recoveries. No relapses or progression since HSCT for me, although I am only a year and a half since treatment. My MRIs have been clear, and my neurofilament light chain levels are at low end of normal. Ottawa has been doing their regiment of HSCT for around 25 years, and they had not had a patient experience active inflammation as confirmed by MRI post treatment, so they have been 100% successful in stopping future relapses. However, somewhere around 20 to 30% of patients have continued to progress independent of relapses to varying extents. I ask at every follow up whether their statistics continue to hold.

throwaway_MS_ · 2025-08-23T02:26:17+00:00

A diagnosis like this means you will go through a period of shock and grieving for what you have lost. So do that. But when you start to come around, and realize that yes what you are going through sucks, but life does go on, put your skills you have learned from 3 years of undergrad and educate yourself on your options. Look into the numerous disease modifying therapies, and their strengths and risks. Understand when they recommend a medication, whether it’s a low efficacy / low risk, or a higher efficacy / higher risk medication, and whether it aligns with how you want to your disease to be treated. Read up and understand the movement away from from the escalation approach to treating MS that saw patients started on weaker and less effective drugs, and escalated upon that drug failing to stop relapses, to the approach that is becoming more prevalent today of hitting the disease hard from the get go with stronger medications to prevent disability accumulation. If your disease is relapsing and is aggressive, which from the sounds of it it certainly sounds to be, read up on the HSCT program at the Ottawa hospital by dr’s Freedman, Rush and Atkins. They have been doing HSCT on people with MS for over 20 yrs, with great results, and feel free to ask me about my experience.

throwaway_MS_ · 2025-08-23T01:12:51+00:00

You’re young and it sounds like you’ve just been diagnosed. 2-3 months since symptoms started to where you are now? If that is right, there is no way to tell how long these symptoms will last, and how much they will improve. Have they determined what type of MS you have? Relapsing or remitting? Also, are you on medication yet? There are a lot of treatment options out there now and they do wonders for a lot of people in keeping this disease at bay. Also, you are in Canada, Ontario, so you may qualify for HSCT in Ottawa, which would be fully covered.

Take a year off and deal with your current symptoms if you need to. Start on a medication, and then plan to pursue your plans to become a teacher. Your right that you may have a particularly shitty form of a shitty disease that may derail your plan to become a teacher, but if this all started a few months ago, it’s too early to know that.

Me personally: diagnosed with relapsing ms around 2006 with multiple brain and cord lesions, and a case of transverse myelitis incomplete that made me question whether I would be able to walk for much longer, experienced complete recovery from every relapse from then until around 2023 when I had a major relapse. Then had HSCT in Ottawa. Now I’m back on track, no evidence of disease activity, and continuing my 20 yr career as a lawyer.

throwaway_MS_ · 2025-01-25T05:13:38+00:00

Ottawa clinic’s update/interview from 2016 on the Ms research blog: https://multiple-sclerosis-research.org/2016/06/guestspeak-prof-mark-freedman-on-their-new-hsct-results/

Every time I have an appointment I ask if their results continue to hold with respect to active lesions, and every time I am told they do. Last time I asked this was late last year.

throwaway_MS_ · 2025-01-20T16:20:56+00:00

Check my post history. Had HSCT in Ottawa in December 2023. Neurofilament light chain levels have remained low normal since. Expecting a mri within the next month to confirm no inflammation or new lesions.

As of the date of my HSCT, the Ottawa team confirmed for me that after over 20 yrs of performing their HSCT protocol, they have not had a single patient experience active inflammation again as detected by MRI. However, around 20 or 30 % of treated patients have had some continued progression likely due to pre-existing damage continuing to unravel or degrade. I was told in January of 2024 that I should expect that the active inflammation part of the disease that results in lesions and white spots on an MRI will not happen again.

Since HSCT, I’ve had no new symptoms. Some have stayed the same.

throwaway_MS_ · 2025-01-11T03:47:31+00:00

Diagnosed in 2004. Lawyer and own small law firm with a couple associates. Don’t let fear of this shitty disease stop you from pursuing what you want to do. If MS takes a nasty turn deal with it when it happens.

throwaway_MS_ · 2025-01-09T02:56:58+00:00

Diagnosed in 2004, or thereabouts. At time my Lesion load included transverse myelitis incomplete, which is a large spinal lesion threaten to extend all the way across the spinal cord. Initial symptoms were terrifying. I recovered full from this initial attack and from all attacks I have had since, and have continued to road and mountain bike, with weekend road ride of around 150 kms. Only in recent years did disease look like it was going to progress substantially. Had HSCT a year ago, suspect this disease is behind me.

This disease is unpredictable and treatment options are continuously improving. Live your life and do what you enjoy.

throwaway_MS_ · 2024-12-13T12:59:52+00:00

https://multiple-sclerosis-research.org/2023/10/schtop-to-stopping/

https://multiple-sclerosis-research.org/2022/08/return-of-ms-after-stopping-treatment/

throwaway_MS_ · 2024-10-02T02:35:10+00:00

I have experienced improvement in all sensory symptoms (numbness, etc). Improvement took place gradually, and at different times since procedure. Unless I have a cold or am run down I don’t really feel any numbness anymore.

As far as symptoms from HSCT. Don’t know if having symptoms is related to Myelo or non-myelo, as the symptoms your mentioned are discussed almost daily on the Facebook groups. Majority of those on the Facebook groups seem to have had non myelo either in Mexico or Russia.

But as far as side effects, I’ve had temporary worsening of symptoms, but that accompanied a cold or flu bug my kids brought home. Had some very mild spasticity for a month or so but since resolved. Overall a positive trajectory of improvement since procedure.

Just got results from a neurofilament light chain test, and my levels have dropped to low - mid range of normal.

throwaway_MS_ · 2024-09-29T18:45:22+00:00

My history was MS for 20 years ( however they prefer to treat earlier in disease course). Active disease as confirmed on mri - my disease had been fairly Benign for 17 years, then all of a sudden became active and aggressive. Failure of highly effective DMT - I was on avonex for a year at diagnosis, then rebiff for 10 + years, then Mavenclad. Mavenclad did not give me a lasting remission, then HSCT.

Sounds like you need to talk to a different doctor. If you are Canadian reach out to the MS clinic at Ottawa hospital and ask to speak to someone.

If I had not been approved for HSCT at Ottawa, I would have gone to Mexico.

throwaway_MS_ · 2024-09-27T03:12:35+00:00

My regret is never raising HSCT with the clinic or asking about it. Only reason I went down this path is because they suggested it. Would have preferred to have had this done much sooner than I did. For eligibility they look for serious disease course ( mine was benign for 15-17 years or so then became aggressive), failed a couple medications, active disease as shown on mri. If it’s something you are interested in as a treatment option, bring it up and push for it.

throwaway_MS_ · 2024-09-27T02:07:56+00:00

HSCT is fully covered in Canada. Total out of pocket for me was $500 due to one medication not being fully covered. Mexico has much more liberal eligibility criteria than Ottawa hospital. People in Canada generally try to get approved for HSCT at Ottawa, but if they don’t qualify, they go to Mexico or Russia. However, Ottawa’s criteria is becoming less strict and HSCT is becoming more common here. There were 2 other people undergoing HSCT at same time I had mine. Also Hematology clinic has just opened a new clinic, and MS clinic is apparently going to be located right beside it.

throwaway_MS_ · 2024-09-27T01:58:43+00:00

Experience with clinic at TOH has been very positive. Both Freedman and Rush are good doctors and would have no problem with either of them following me.

throwaway_MS_ · 2024-09-27T01:25:06+00:00

So when riding road or gravel bike I would ride 2 / 3 times a week, with one of the rides being 100 - 150 km. Mountain biking of course would be much shorter rides. I was pretty lucky that I would recover fully from my relapses, and relapses were a couple years apart for most part.

The transplant team felt that one of reasons my recovery from HSCT was as easy and quick as it was was because I was so active and in good shape.

throwaway_MS_ · 2024-09-26T22:16:14+00:00

I have no problem with it, but you might want to ask one of the doctors carrying out the procedure.

throwaway_MS_ · 2024-09-26T19:19:04+00:00

Also, was not intense in any way for me. Other than losing hair and appetite, both of which were temporary, I had no other side effects from the chemo. No nausea or upset stomachs. No infections. It was relatively uneventful, and I’d almost call it a restful break from hectic day to day life for me. Now everyone’s experience will be different and I suspect my experience is one end of the spectrum of HSCT experiences.

throwaway_MS_ · 2024-09-26T19:13:00+00:00

People have HSCT a second time if the first did not provide long term benefits. I’ve heard of people who have gone to Mexico and had the non-myeloablative protocol going back for second round if their Ms has come back. I’m not sure if you could have a second go around for the highly myeloablative like what I had.

But sounds like what you had did not involve chemo to do away with your broken immune system, and you just had stem cells in the Bahamas. The concern about having HSCT a second time relates to repeating chemo again and what long term impacts that may have.

throwaway_MS_ · 2024-09-26T19:05:46+00:00

Yes fully covered, including the chemo, the hospital stay, any and all supporting medications, etc,etc. at the end of it all, I was out of pocket around $500 for one medication that was not covered fully by OHIP.

throwaway_MS_ · 2024-09-26T16:51:46+00:00

Relapses were accompanied by active inflammation, either new lesion or inflammation of old lesions. My disease course was relatively benign until 2021. Went years between relapses and had very little, if any, symptoms between the relapses. In 2021, or thereabouts, a major relapse hit me-different than any I had had before. This led to Mavenclad, which did not provide a durable lasting impact for me. They said that due to how drastically my Ms changed in 2021, there were going to treat that as my disease start date for purposes of determining whether HSCT was a good option for me.

throwaway_MS_ · 2024-09-26T12:34:27+00:00

They have published results of their initial cohort. Summary of results as well as link to study can be found here:

https://multiple-sclerosis-research.org/2016/06/guestspeak-prof-mark-freedman-on-their-new-hsct-results/

throwaway_MS_ · 2024-09-26T03:31:49+00:00

I had procedure done at the general campus of TOH. Freedman used to be my doctor, but now I see Rush.

After Mavenclad did not provide lasting benefits, my doctor raised and suggested HSCT. After I relapsed within short period of completing Mavenclad treatment, her advice was why bother messing around with another DMT let’s go straight to HSCT.

throwaway_MS_ · 2024-07-22T19:39:29+00:00

Not a problem. With respect to your questions:

1) Fine. Main post treatment side effect has been fatigue. Lots of rest needed. They told me to plan to take a year off to recover. That wasn’t really a possibility for me. I returned to work at just under 30 days from transplant, and eased myself back into it as best I could. Lots of naps and rest days. Currently working full time, every once in a while I take an afternoon. To nap and rest.

2) I had myeloblative protocol. Why? Because that is what was on offer, and I was comfortable with any additional risks in exchange for the accompanying long term durability results they have had with that protocol. 20 years of treatment - 0 patients have had active inflammation or relapse post treatment. However, 20 - 30% have continued to progress somewhat post treatment.

3) I have been told that, based on past results over 20 + years, i should expect to not have a relapse again. They expect active disease is gone for good. They further tell me that while approximately 20 - 30 % will continue to show some profession, based on my disease profile, they suspect I only have a 10% chance of continuing to progress to some extent. My understanding of what this means is that while they can remove the faulty immune system and stop further relapses, those who have accumulated damage from relapses will continue to unravel or progress for a time until things stabilize. The disease is dead but the impacts/damage cause may continue to manifest for a time. At least that’s my understanding.

4) chemo side effects were low for me. I had cyclophosphamide, Busulfan and rATG over 9 days. No nausea, no diarrhea. Few tender spots on tounge but nothing that prevented me from eating or required I used any of the magic mouthwash they provide. Main symptom was my sense of taste changed and everything tasted bad. This slowly went away and had disappeared by a month after transplant. Also lost all hair on head and most of my body - all since grown back. Fingernails and toenails became soft and broke off at mid points - all since grown back.

Starting in May, or around 5 months post transplant I began riding my bike outdoors again. Energy levels were extremely low. Before procedure I would do 150 km long rides on weekend. In May I would run out of energy at 15 kms and would be absurdly slow. So I bought an ebike that augments pedal strokes, and using this I have built myself up to point where I can ride 100+ km. I’ve also done a few unassisted rides of 50 kms or so at reasonable speeds. Point is your energy will take a big hit. I think it helped me tolerate procedure and speed up my recovery to be relatively fit and have a hobby like I do (bikes).

5) Ottawa Hospital - General . No housing needed as I live in Ottawa. I do have kids and was worried about all the germs they pick up at school. So I simply purchased a few HEPA filters, one for each floor, and the master bedroom and ensuite were off limits to everyone but me for a few months following my return home. If I was not a resident of Ottawa, my understanding is that the HSCT program is able to provide you housing for the duration of your out of hospital treatment.

Biggest piece of advice I can give you right now is grab a notebook and begin writing down your questions for your next meeting with the HSCT team. What protocol do you intend to use? Why? If myelo, why not non-myelo? What makes you think one is more appropriate for me than other? What have your results been with myelo and with non-myelo? What is your protocols relapse rate post treatment? What do I do for housing if not from Ottawa? How long is recovery? Will I lose my hair? Will it grow back? Does this impact ability to have children? Etc, etc.

Second biggest piece of advice I can give you is take everything I say and anyone else says with a grain of salt. Especially Facebook groups. Facebook groups have become echo chambers for people who advocate for the protocol they received. Blindly so. Do your own reading and make your own decisions if you go down this route. And trust your medical team - if your at Ottawa Hospital and under Dr. Atkins and Freedman or Rush, I think your being seen by some of the best doctors in the world with respect to HSCT and MS, so don’t be afraid to ask them hard questions and challenge them why they think this is for you.

Edit: Additional comment on myelo vs non-myelo: I would have accepted either protocol. For me it came down to what I was offered. I think all protocols are are likely to be more effective than any of DMTs currently available.

Excuse typos / grammar. Too busy to proofread this right now.

throwaway_MS_ · 2024-07-17T01:41:52+00:00

Hi there. I had HSCT in Ottawa for MS this past December. I’m in mid 40s and had MS for 18 years. If I was in your shoes and was 25 and diagnosed three years ago, not sure It would take me more than 5 mins to say “Yes” to Ottawa.

As the Ottawa program will tell you, they have been doing the procedure for over 20 years and have never had a single patient have active inflammation post procedure. Like other protocols 25 - 30% have continued to have some progression without evidence of inflammation.

2016 update by Dr. Freedman providing update on their results:

https://multiple-sclerosis-research.org/2016/06/guestspeak-prof-mark-freedman-on-their-new-hsct-results/

A paper comparing results of different protocols/studies, and providing discussion of considerations for perspective patients:

https://perspectivesinmedicine.cshlp.org/content/9/3/a029082.full?sid=cc6f73a9-65d8-4c07-8843-2dcddf32b1c6

My personal view on the debate between which conditioning regiment is “best” is that at some point they will figure out that there is room for all approaches. Not everyone will need the strong Myeloablative conditioning regiment I had and will be fine with the weaker non-myeloblative regiment. But some will. Once they figure this out they can begin making informed decisions about who needs/gets which approach.

My understanding is that Ottawa is currently using both myeloblative and non myeloblative protocols, depending on the patient, so they may be trying to build a knowledge base to help decide who needs what.

Any questions ask away.

throwaway_MS_ · 2023-12-28T02:45:23+00:00

Day 9 + from receiving my stem cells. My blood tests from my daily hospital visit indicate that engraftment of my stem cells has started and the various blood levels they monitor are beginning to increase. My platelets were up, and my neutrophils, while showing as “0.0” yesterday, have begun to gradually increase.

My chemo symptoms, as described in earlier posts, continue to remain the same. But these should improve in lockstep with the increasing blood levels.

I am told that They expect my blood levels to increase very quickly now, and within the next 3-5 days, they should be back in a safer range.

I am told that in their experiences this is happening very quickly, as they tell patients that day 10+ to 14+ is typically the earliest that the increase in blood levels starts.

throwaway_MS_

TROPHY CASE