My CtrlAltDel - Status

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Re: My CtrlAltDel - Status

Postby georgegoss » Mon Dec 05, 2011 9:49 pm

BTW. . . I know this thread is not about Stella. But because Shucks mentioned it. . . . My heart also goes out to Stella (and Marc) for the terrible treatment experience she endured. But I'm going to add my overall observation regarding this subject. . . .

Like most, I was horrified in following Stella's HSCT treatment. I never before heard of such a bad HSCT treatment experience for MS with the evolved & updated protocols (and I've read nearly all the literature on the subject). Although I don't have any first hand knowledge of the London hospital facility where she was treated, I really have to question the quality of the medical care she received. There is no excuse for her having developed sepsis (that led to all her other horrible complications). The fact that she did develop sepsis indicates to me that the medical staff waited too long in proactively treating her with required and necessary prophylaxis anti-infective agents. If the medical staff waited to treat her following a diagnosis of the underlying problem, then they waited too long. I strongly suspect that the doctors were negligent. Such a thing should never happen when HSCT is performed properly and there is no excuse for what should have never happened. She undoubtedly holds the record for the worst HSCT-treated MS patient experience which I hope will never be repeated. My absolute best wishes for her and Marc.
Last edited by georgegoss on Tue Dec 06, 2011 11:27 am, edited 3 times in total.
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Re: My CtrlAltDel - Status

Postby packo » Tue Dec 06, 2011 1:51 am

georgegoss wrote: She undoubtedly holds the record for the worst HSCT-treated MS patient experience which I hope will never be repeated. My absolute best wishes for her and Marc.


George, I met a guy who had sepsis twice after the HSCT (fortunately, he survived) and another one who died. This was one of the reasons why myeloablative protocol was never an option for me. Those cases that I mentioned happened in Europe 5-6-7 years ago, and the protocol was much more cruel those days-and of course, the standard of care obviously was not like in Germany...however, one death happened also in Canada, and few of them barely survived. My intention is not to discourage anyone, I am just trying to be informative.
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Re: My CtrlAltDel - Status

Postby Asher » Tue Dec 06, 2011 4:05 am

If the medical staff waited to treat her following diagnose of the underlying problem, then they waited too long. I strongly suspect that the doctors were negligent.


This is a bold statement. We don't know exactly what happened there and why. While choosing a good and reputable facility is wise for any medical procedure, it is important to note that HSCT, and definitely the Myeloablative variant, does not come without risk. Even Heidelberg, a world class facility, boasts a 0.84% mortality risk - 100% for you if you happen to be unfortunate enough to be one of those who compose this statistic. If one considers this risk unacceptable, HSCT is not an option. Risk tolerance and what is perceived as risk is a subject that probably warrants a separate thread.
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Re: My CtrlAltDel - Status

Postby packo » Tue Dec 06, 2011 4:29 am

Of course it can be dangerous, and it was much more dangerous before, take it for example ASTIMS trial (http://www.astims.org/)
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Re: My CtrlAltDel - Status

Postby shucks » Tue Dec 06, 2011 5:20 am

I didn't mean to start a flame fest. I think anything comes with risks. Even in dr burts first trial there was a recorded 5 percent mortality rate. I have heard horror stories from other folks about london's medical care compared to other places, but that's more a political discussion that can be had somewhere else. Stellas situation should serve as a reminder along with the 10 folks I have talked to who have had life and disease altering great experiences. Her behavior since this happened shows how strong ger character is, even with her new challenges ahead. Congrats again Asher and george, and I hope that if I get accepted that I ca follow the path you guys blaze.
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Re: My CtrlAltDel - Status

Postby georgegoss » Tue Dec 06, 2011 11:28 am

I did ask the HSCT ward doctor in Heidelberg how often they have patients that develop sepsis. The doctor said "Never. We never let it get that far. We treat it before it becomes a problem. Even before we know what the cause of the infection might be." Considering they do 300 transplants a year, thats pretty telling.

So yes, I agree with everyone else that HSCT has potentially serious risks associated with the treatment (which is why it should not be taken lightly). But sepsis iteself should not be one of them. Sepsis is a secondary infection. Proactive treatment should nip a primary infection in the bud well before it develops into a secondary infection. Waiting just a couple of hours doing nothing is what makes the difference which is why the treatment facility procedures and protocols has a larger impact on treatment safety as opposed to the HSCT procedure itself.
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Re: My CtrlAltDel - Status

Postby shucks » Tue Dec 06, 2011 12:29 pm

I could be wrong, but I thought secondary infections were the biggest cause of mortality in HSCT. Haveing no immune system and getting a secondary infection should be a big issue, shouldn't it? I all types of confused.
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Re: My CtrlAltDel - Status

Postby georgegoss » Tue Dec 06, 2011 12:58 pm

shucks wrote:I could be wrong, but I thought secondary infections were the biggest cause of mortality in HSCT. Haveing no immune system and getting a secondary infection should be a big issue, shouldn't it? I all types of confused.


For the many number of cancer patients that receive HSCT (both autologous and allogeneic) every year, infections of every type are definitrely the primary cause of mortality. But the way infections are treated and dealth-with has a far-stronger correlation with death as opposed to just the procedure itself.
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Re: My CtrlAltDel - Status

Postby CVfactor » Tue Dec 06, 2011 4:28 pm

Even Heidelberg, a world class facility,
boasts a 0.84% mortality risk


I would be interested to know the circumstances for these deaths (disease stage, age, etc.).

I'm curious to know what are the safeguards for people who routinely have HSCT performed for cancer and the associated mortality rate?

It's almost as if you would need a clean room environment and protocol (like in silicone chip manufacturing) to ensure all facilities are compatible.
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Re: My CtrlAltDel - Status

Postby georgegoss » Tue Dec 06, 2011 6:56 pm

would be interested to know the circumstances for these deaths (disease stage, age, etc.).

The statistics are all based on cancer paients (a very large treatment population so this is a well studied area). Most of the deaths are elderly with high comorbidity issues associated with their existing malignant illness. Heidelberg has not broken out any statistics for MS patient population because of so few treated individuals with MS. Certainly I would expect the mortality rate to be lower for MS patients that are otherwise healthy.

I'm curious to know what are the safeguards for people who routinely have HSCT performed for cancer and the associated mortality rate?

The best safeguard for preserving life for an otherwise healthy individual undergoing HSCT is "proactive" and prophylaxis treatment to prevent infections during neutropenia. That means immediately treating patients with anti-infective agents at the first sign of fever, or other indication and not waiting to diagnose the exact nature of a possible infection. Delaying such treatment for even a short period of time can result in life-threatining complications (as I suspect this is what may have happened with Stella).

90% of HSCT patients normally develop an idiopathic (cause unknown) fever. But there's no way to know at first what the cause of the fever is and no way to immediately differentiate between an idiopathic fever and one that is caused by an actual infection. So the best, safest course of action is at the first sign of any fever to "shoot (antibiotics) first, and ask questions later." During my own HSCT procedure, just like most others I had an idiopathic fever for a week with no apparent cause and was administered potent wide-spectrum anti-infectives around the clock during the whole time I was febrile. Once my leukocytes (WBC's) recovered, my fever went away and I recovered normally. Probably I never had any infection of any type and was just having a normal reaction to the cytopenia. But if I had actually had an infection, no doubt the antibiotic IV's saved my life. This is the safety protocol every hospital should take. If not, I wouldn't want to be treated there.

And of course the sterility of food is important (if one can eat during this period of time, which I didn't).

It's almost as if you would need a clean room environment and protocol (like in silicone chip manufacturing) to ensure all facilities are compatible.

This is true and necessary for allogeneic HSCT recipients that are at prolonged high risk of infection. But it's not a necessity for autologous HSCT recipients. Airborne pathogens normally floating through the air are orders-of-magnitude less important as compared to the real danger of pathogens transmitted on hard surfaces and from other people's touch. So the next most important thing to control the environment is continual hand sanitizing (alcohol) for all medical staff and visitors. And then on top of this, Heidelberg "sanitizing staff" also wiped down surfaces in the room twice per day with disinfectant.

I call allogeneic HSCT patient rooms "isolation clean rooms" that are sterile as can be.
Autologous patient rooms I call "sanitized rooms."

The two need not be maintained at the same level. It simply isn't necessary and does not result in a higher survival rate (even though the mortality rate is already quite low for autologous patients receving treatment in a properly run facility).
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Re: My CtrlAltDel - Status

Postby CVfactor » Wed Dec 07, 2011 7:20 am

Risk
tolerance and what is perceived as risk is a subject
that probably warrants a separate thread.


Just a thought that it my be of value to start a sticky thread specifically for the HSCT procedure that would include risks assessments. I definitely would not want to have this procedure done at a substandard facility.

Also this could clear up some of the misconceptions that are floating around about other methods that do not include chemotherapy and are only focused on injection of stem cells.
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Re: My CtrlAltDel - Status

Postby Asher » Wed Dec 07, 2011 9:48 am

Just a thought that it my be of value to start a sticky thread specifically for the HSCT procedure that would include risks assessments.


This is a great idea! It would be of great service to MS patients and their families given the confusing, and at times misleading, information floating around. I was lucky to have George to help me set my mind straight around HSCT and the pitfalls to avoid.
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Re: My CtrlAltDel - Status

Postby Asher » Mon Dec 12, 2011 5:54 am

In the past months I finally came round to understanding and eloquently spelling out what it is that MS robbed one off. This helps me to get a clearer understanding of what it is that I am hoping to recover following my HSCT procedure.
Where I came out is; ‘Stamina’ and ‘Agility’, both Physical and Mental. Here are the dictionary definitions of both terms:

Stamina (Physical and Mental)
• Enduring energy, strength and energy; resilience.
• The power to withstand hardship or stress; staying power.

Agility (Physical and Mental)
• The power of moving quickly and easily; nimbleness.
• The ability to think and draw conclusions quickly; intellectual acuity.

Stamina and Agility, my long lost friends that made who I once was; 14 hour work days, stress resilient, huge drive and endurance, both mental and physical. I think this is as sharp a definition of what MS strips you off as I can construe. As I assume people who are reading this are either MS sufferers or their caretakers, elaborating on this theme is superfluous.

So, now that I have a definition, where do I stand on both accounts?

Interestingly, only 6+ months post transplantation, my ‘Mental Stamina and Agility’ have recovered to I’d say 90% of what they once were. Specifically: Short-term memory, language and speaking, alertness, emotional stability, ability to see and appreciate subtleties, speed and ability to analyze and draw conclusions. Also, I can engage in conversation and communicate for hours at a time or just read a book without falling asleep after 4 pages (at best).

What’s still a far cry from the past are my ‘Physical Stamina and Agility’. It’s like I am still running on old rechargeable batteries. They provide limited power and quickly run out. I can best define it by what it is not; I do not jump out of bed in the morning, do not seamlessly button-up my shirt and put on my shoes, shave, grab a sandwich and a cup of coffee, hop into the car and make my first call to the office while driving, and pumping up for another day of challenge at the office, and take a call from my wife to plan our ski vacation after Christmas. I cannot endure more than 10 minutes of sustained physical effort, and my ability to effectively move around is limited to 400 meters, after which I am seriously exhausted.

Now this is not to say that I am not starting to progress on the physical front as well. Now, I realize that the extent to which my mental/cognitive recovered will not be duplicated in the physical realm. How do I know this? I guess the only answer is that it’s a hunch. But, as far as I am concerned, I will recover every inch that is in my reach. I exercise daily, eat well, get sufficient sleep, try to be happy (yes, happiness is to a great extent voluntary) and remain positive. It remains to ne seen in the next 24 months how far this will take me.

That’s all I wanted to share at this juncture, I will keep reporting any progress.
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Re: My CtrlAltDel - Status

Postby shucks » Mon Dec 12, 2011 7:03 am

Thought you say you have limited physical stamina and agility, is it better than before the procedure? Have you gotten any better on that front?
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Re: My CtrlAltDel - Status

Postby Asher » Mon Dec 12, 2011 8:55 am

Shucks, the answer is in the text:
Now this is not to say that I am not starting to progress on the physical front as well. Now, I realize that the extent to which my mental/cognitive recovered will not be duplicated in the physical realm. How do I know this? I guess the only answer is that it’s a hunch. But, as far as I am concerned, I will recover every inch that is in my reach.


Yes, there are signs of physical improvement, albeit modest and nearly not as significant as is the case on the cognitive side. Besides, and here is the thing, as in a stroke or spinal damage, recovery of motor neurons and motor function is a slow and a pain staking process which requires both work and patients. There are no short cuts, at least not for people who at the time of their treatment were in a progressive stage of their disease with a significantat disability load. Can't make it sound better than it is.
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