Just got out of meeting with dr burt, and now have decisions

Discuss stem cells, adult and embryonic, and their therapeutic potential for MS here.

Just got out of meeting with dr burt, and now have decisions

Postby shucks » Wed Feb 01, 2012 5:57 pm

I want to preface this with the fact I recently got engaged to my girlfriend of nine yrs and am in the process of trying to figure out when to get married. The biggest impediment to sealing the deal is this damnedable illness. I have only been diagnosed for a year or so, but have been having some pretty tough relapses over the last year. In light of what I have learned in the last year on here, i convinced my neuro to sign off on my attempts to get into dr Burt's hsct trial. Months of work came down to a trip to chi town this week to decide whether he would take my into the program. First up was a two hr wait on the first dr, who told me he didn't think my diseas was that serious, followed by a meeting with dr Burt who says I am progressing aggressively and am a prime candidate for the trial. He says he will start paperwork for acceptance and lobby my insurance company starting next week. The disconcerting part is that the control arm of the trial is fingolimod or tysabri, which both scare me way more than hsct treatment. Once accepted, you have a fifty fifty shot at the control arm. He said some pretty discouraging things about the myeleablative protocols that he pioneered as too risky with no added benefit I now have to decide if I want Togo forward with the trial. He told me that they're now not doing much if any outside of trial work. One thing I noticed is that Burt is one passionate guy about what he does, and makes me quite confident in his staffs abilities. He has done on hundred and fifty or so of these things using lympho ablative protocol, and way more since He started out with leukemia patients. He said the mortality rate has been zero percent in the lympho ablative protocol and higher in the others, but he estimates one in two hundred through northwestern. The average time out of work total is 18 to 20 weeks, with some as low as twelve and as high as 26 or so.
I would like any advice from here, but post mainly for folks on here to know what to expect if they deal with the class acts at northwestern. The hospital is downtown, so I walked everywhere, and there Is a heat wave, which means it Was forty degrees for the Week I have been here.
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Re: Just got out of meeting with dr burt, and now have decis

Postby shucks » Wed Feb 01, 2012 5:59 pm

They also told me that they recommend brewers yeast and green tea as the best supplements for upping energy for those with ms or dealing with fatigue in e program.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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Re: Just got out of meeting with dr burt, and now have decis

Postby lyndacarol » Wed Feb 01, 2012 6:54 pm

shucks – I am quite ignorant about stem cell procedures. Frankly, I am scared by what I hear about fingolimod and Tysabri. I encourage you to ask LOTS of questions. I do not know your situation; you have spoken about a girlfriend and getting married – would any of these treatments that you are considering affect your fertility? Having children may not be an issue with you; have you discussed this with your future wife?
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Re: Just got out of meeting with dr burt, and now have decis

Postby shucks » Wed Feb 01, 2012 7:01 pm

I have, and dr burt says that for those under 35 the risk of infertility is 50-50 and over that its much higher. Under 30 is90percent no interference with fertility.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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Re: Just got out of meeting with dr burt, and now have decis

Postby maynaka » Thu Feb 02, 2012 9:49 am

shucks,

Unfortunately, I don't have any knowledge to impart as it relates to the trial, but I'll offer my two cents about Northwestern.

My old neuro was there. The hospital and staff are 1st rate. NW has an outstanding reputation as does Burt; as far as locations go...it is in a prime area of Chicago!

Good luck in your decision process.

M
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Re: Just got out of meeting with dr burt, and now have decis

Postby Lyon » Thu Feb 02, 2012 3:10 pm

It's weird that it sounds as if he was almost trying to talk you out of it. Maybe that's something he does to sort out those who aren't convinced enough that this is what they want to do.

shucks wrote:The disconcerting part is that the control arm of the trial is fingolimod or tysabri, which both scare me way more than hsct treatment.
Best left to you to educate yourself and sort your feelings on whether you accept the risk of being on those. Regarding the risk of being on the "right" or "wrong" treatment during a clinical trial....my wife was in the Tovaxin IIb trial which we were very hopeful for maybe even confident of and which had a 2/3 ratio of getting the real thing and 1/3 would only get colored water for a year. With my wife being a new MSer at the time and not knowing if her disease progression was going to be mild or aggressive, finding herself on placebo for a year in the face of severe progression seemed pretty unfair and uncaring but had great hopes for Tovaxin and a very enticing factor in that clinical trial was that during the second year EVERYONE was to be offered the real thing, especially considering that my wife had tried Rebif for a month or so and decided that she wasn't going to stick herself with needles and therefore it was going to be Tovaxin or nothing.

What I'm getting at, regardless of what treatment you get in the first phase is the agreement that you will have been treated hsct at some point?
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Re: Just got out of meeting with dr burt, and now have decis

Postby georgegoss » Fri Feb 03, 2012 11:43 am

Hey Shucks,

Great write up for your experience meeting with Burt in Chicago. No doubt he is a great doctor. And sounds like Burt is correct in identifying your MS as rapidly progressing (since you've only been diagnosed for a year). So the good news about HSCT is that it is "most" effective in cases such as yours.

If you are able to be accepted to this phase III study (quite difficult with very narrow inclusion/exclusion criteria), good possibility that your insurance will spring for the cost. The unfortunate part (as you already know) is that you have a 50% chance of being assigned to the control arm in which you don't receive HSCT. If you end up in the control arm the drug regimens are not risk-free having already demonstrated some patient fatalities (and also they don't work nearly anywhere as well as HSCT). Although I'm not bad-mouthing these drugs and I would have seriously considered using them if they were available when I was first diagnosed with MS 16 years ago.

Fingolimod = possible heart muscle failure

Fingolimod safety review launched over heart concerns

http://www.pjonline.com/news/fingolimod ... t_concerns

Tysabri = possible PML

Biogen reports 10 more Tysabri PML cases, 4 deaths

http://www.reuters.com/article/2011/02/ ... 0320110218

Luckily, just like all other MS'ers that undergoes HSCT, I no longer need to take any MS drugs of any kind anymore since HSCT effectively stops MS and likely results in substantial reversal / improvement of pre-existing symptoms.

There is a silver lining to being assigned to NWU's control arm. If a patient's EDSS worsens by one point in one year during study participation, then the patient can cross-over to HSCT treatment, as described by Dr. Burt in this video (start watching from three minutes in):

http://www.youtube.com/watch?v=msYTOSo4 ... re=channel

But of course in the end, you want HSCT as soon as possible that is FAR superior to conventional drug therapy to cure your MS. You always have the option of paying for the treatment outside of a trial if you can raise the money. $150K in chicago, $40K in India, 50K Euros in Germany:

http://themscure.blogspot.com/2011/06/g ... -have.html

Wishing you the best of luck.

- George
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Re: Just got out of meeting with dr burt, and now have decis

Postby shucks » Fri Feb 03, 2012 2:18 pm

Thanks George. He told me that he is not planning on doing them outside of the trial right now due to the fact that folks getting assigned to the control arm are usually disapointed as everyone wants the treatment without the risk of getting the control arm. He says that anyone getting the compassionate basis would have to be completely non qualified for the trial.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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Re: Just got out of meeting with dr burt, and now have decis

Postby shucks » Fri Feb 10, 2012 8:23 pm

So, they just told me that my insurance will turn me down fr coverage, but that with the right letter writing, they can be convinced. Anyone done this before? I know I met someone through George's blog who had been successful, but don't know who it was, anyone able to point me in the righ direction?
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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Re: Just got out of meeting with dr burt, and now have decis

Postby georgegoss » Fri Feb 10, 2012 10:07 pm

I do know one MS'er who's insurance paid for his HSCT with Dr. Burt. Send me a private message with your e-mail and I'll hook you up with him. Perhaps he can provide some helpful pointers.

- George
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Re: Just got out of meeting with dr burt, and now have decis

Postby LR1234 » Wed Feb 15, 2012 3:08 am

Just a note...If you do decide to go for it, maybe it is worth going to a fertility centre to store what you need to for a future date (just in case) x
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Re: Just got out of meeting with dr burt, and now have decis

Postby georgegoss » Wed Feb 15, 2012 10:17 am

LR1234 wrote:Just a note...If you do decide to go for it, maybe it is worth going to a fertility centre to store what you need to for a future date (just in case) x


Agreed with LR! Unlike the near-certain irreversible infertility conferred by the myeloablative HSCT protocol, Burt's non-myeloablative protocol is "less" likely to cause permanent sterility, but that's not gauranteed. There is always a finite probability you could be permanently affected.

Before my treatment I expected my myeloabltive (BEAM) HSCT to render me infertile, which it did. But since I anticipated this I banked my sperm beforehand to use for an IVF procedure for my wife. It worked fine and we are expecting our second child any day now:

http://themscure.blogspot.com/2011/09/next-miracle.html

Good luck!

- George
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Re: Just got out of meeting with dr burt, and now have decis

Postby DougL » Wed Feb 15, 2012 10:21 am

georgegoss wrote:we are expecting our second child any day now:


YAAAAAAY. Congrats.
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Re: Just got out of meeting with dr burt, and now have decis

Postby shucks » Thu Feb 16, 2012 10:15 am

Dr. Burt told me that as well, even though it is a high chance of not being sterile, it is not a risk worth taking, so bank some.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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