Stem Cell Trials at Sunnybrook

[DebbieD]

i've volunteered to take part in study of stemcell research at sunnybrook. Dr Cashman has got full funding and needs 5 volunteers and someone to head the study. i'm volunteer number 4. this is not embryonic stem cells. the stemcells come from our own bodies. is anyone else in the toronto area interested? i thought i'd put the word out! :D

[TBear]

Hi Debbie:

I spoke with Neil about this "autologous stem cell" trial over 2 years ago. He was very excited about it and I'm glad that it has reached the clinical phase. It's been in the works for some time.
Good luck to you, Dr. Cashman and everybody else involved!

Cheers

T.

[Theresa2004]

Al mentioned something about this awhile ago but I don't recall all the details, sorry Al, I was listening and reading, but I am having a seniors moment, they are coming more rapidly these days. In lay terms, could the group elaborate. I know the commitment is 6 months, and many visits to the doctor, but what it the protocol and expectation from these trials.
Thanks

[Al]

If I am correct they do a series of lumbar punctures to remove cells from your spinal fluid clean them up shake them around and then inject them back in in the hopes that they will grow new cells in the damaged areas. There are quite a few visits to hospital for blood tests as well as EMG's and possibly nerve conduction studies done. Won't be a picnic as they are not 100% sure that it will do no harm. EMG's are not a picnic either. I don't think Dr. Cashman would try it unless it was as they say a manageable risk. I think this in simple terms and it is quite a bit more complicated than this Think that's about it in a nutshell though.

[TBear]

Hi Guys:
If I recall correctly, he separates the stem cells out of the substrate and treats it with a growth hormone before they go back in. I'm not positive but I think that this is one of very few clinical trials using stem cells... its very exciting. While autologous stem cells are not as potent as the embyonic ones, they certainly bridge the gap for those who are fundamentally oppossed to using embryonic stem cells and opens up the research potential for wider applications.
Off the soap box now... I hope that all of you east of Lake Huron are getting ready for the snow!
T.

[me]

No snow, no snow, no snow.....I'm practicing the positive thinking and imagry thing :)

Speaking of EMG's.....what all is involved in that? That's one of the tests I am trying to convince Nathan to have. -me-

[Carol Deboer]

Good Morning Melissa, and all,


Nathan really needs to have this emg test done. This will certainly give the docs some clear insight as to what is going on with him. They need to get to the bottom of this. The test is long, and they basically test the nerves with tiny electrical impluses that somehow measure the conduction and strength. (right Tbear?) It has been 7 years ago that we had this test done, but, about a week after we got the confirmation that indeed it was this als thing. I told you before, if you need help in seeing Dr. Strong in London, I will definitely help you out, do not hesitate to call me, okay. Now Theresa, I had first dibs on Al's suitcase !!! Maybe he has room for 2 !!! I don't think Lee would mind, she would have someone to go shopping with while "fat bastard" lounges around the pool ha...... I am gonna keep on daydreaming about when I can go mmmm....
Have a good day all..talk soon.

Love, Carol

[Al]

OK Bill Nye the science guy. Showing off your scientist knowledge. LOL. So when are you flying by Brampton or did you not read my post from last night.

The EMG test is not fun. Little electrical impulses ? (like sticking your finger in a light socket 15 or 20 times) The nerve conduction is fun too. They stick needles in you and move them around in your muscles and watch the computer screen to see which screams first. You or the computer. Actually it is not as bad as I make it out to be. Just playing silly ass again. Dr. Tullio did my test at the hospital himself and told me right afterwards that it was ALS. I think that is better than having a technician do it and having to wait for an appointment later. You need both tests to get a (confirmed ?) diagnosis from what I understand.

As for Cuba. I won't be scuba diving so will have a dive bag that is empty. Would the 2 of you fit? It can only weigh 44 lbs. so a quick diet may be in order to fit 2 or chop off both of your legs. Actually the trip was fairly reasonable 1 week all inclusive at Sierra Mar in Santiago de Cuba for $740 per person tax included. Maybe you can all come and we'll have an ALS seminar while at the pool bar. More the merrier. Oh and and another thing. Not much shopping in Cuba other that T-shirts rum and cigars so Lee will be at the bar with me as well. Take care everybody. Al

[DebbieD]

i didn't find the emg test too bad except for the one shock in my neck, but it was over before you have a chance to react. at one point when dr. newell had me roll over onto my right side, i told him i was afraid that i'd fall asleep. he said he's had a couple of patients that actually fell asleep! he had me laughing! :lol:

[TBear]

... see, you guys aren't ready for me to be technical! I pass all this stuff past a friend who is a research scientist in cell biology. She knows all the terminology...
Al, they won't let me back into Brampton... something about a low and over in the picnic area...

Carol, I think you are correct about the EMG. Its a way of testing the nerve function. For anybody who's done electricals... its a continuity test. You put a probe at one end of a nerve and another probe at the end of it and see if a current travels through. If it does the nerve is good. If it doesn't it's damaged. In our cases, like the MRI, you kind of hope that they find something wrong with the nerve.

Melissa, you are on the wrong side of the lake for the snow this time... but thanks for the help!

Okay Al, basic Cuban... "un cerveza mas, por favor". I'm not sure you want the other one that I know... I tried it with one of the guides and got kicked out of the country... apparently I tried to hire his sister... but would settle for his horse! Cubans are very nice but apparently don't have much of a sense of humour. If you want to get on their good side... bring extra toothpaste and soap and stuff that you can give away to the housekeeping staff... they really appreciate it!

T.

[Al]

OK if Brampton is out I can get you an arrival and departure clearance for Burbank International which is a little farther but I am friends with the owner.

As for Cuba I am a little rusty as I haven't been in 3 years but my son worked there as a scuba diving instructor for 4 years so I learned basic spanish. I could ask for food booze or sex and directions to Sierra Mar in spanish. Chris tried to start his own business there but the gov't wants everything and gives not much in return. We have driven the whole length of the country from Santiago to Havanna twice (1000km) each way. Fun WOW. You are right about the Cuban people. The most accomadating people I have met and friendliest but no sense of humor.
We had a Cuban stay with us for a while when he first came to this country and he could not understand our way of playing practivcal jokes on each other. He couldn't see why we would want to laugh at our friends. And here I thought Fidel was laughing at Bush every day.
So there is a little more from Al.

[Theresa2004]

This procedure sounds a bit like a bone marrow transplant. Very cutting edge, are their similar trials being done in the USA?

So is this procedure done only once and then you are monitored?

I have to admit the responses to the question have been fabulous, easy to comprehend. It makes the picture a lot clearer.

Lordy, I'll have to chop myself into little pieces for the 44 lbs weight requirement. Not into scuba diving, but some rum would be nice, although their 'proof' level is a bit over the wall for me.

Tbear, loved your story about the language barriors, excellent. So did you really fly too low into Brampton, or is that an excuse not to visit the newly formed Brampton line of this? MMM? I love sitting up there and watching the planes navigate in. Great place for lunch also.

Carol our problem is solved, Al invited everyone. Man, in our dreams.

Sorry, forgot this part, Al, get a translation dictionary before you get arrested and Castro holds you hostage. You may up asking the waiter for a drink, then sex, and a pony ride. Lee, I'll say a prayer for you!

[Carol Deboer]

Hi Guys,
mmmmmm ...cigars !!! in Cuba ...... can't wait!!! Yep, get that translation book Al, you never know, just like Theresa said, you might be doing something illegal.!!! (but fun) Have a good day all.

Carol

[TBear]

Carol: What would you do with a Cuban Cigar???
T.

[Al]

Where is Monica when you need her?

Cold out there eh?

[TBear]

... hiding out in Bill's humidor

[Carol Deboer]

Hi T,

Smoke it , of course ! Do you have any other ideas? Al, Al, Al, I am no intern. Been there, done that. lol

Carol

[Al]

So if I understand correctly everyone wants to get together and smoke a fine Cuban cigar once I am back. Or drink some fine Cuban Rum. 7 year old of course.

[me]

I'll go for the rum! I got used to the higher proof on our honeymoon in the Virgin Islands. I hadn't done much drinking at that time and we had a ver small fruit drink on the beach, and we both just about passed out! Then there were the coconut drinks......hmmmm, they just don't make it like that here.

Luckily for me it's been illegal to go to Cuba so I haven't had to worry about getting thrown in jail (unless I actually went)! I remember having a student from Sweden in my high school and she didn't seem to get our humour either. Us North Americans sure are a breed unto ourselves! Must be the snow.

Al, you mentioned something about "both" tests. I got a little lost, that was EMG and ????

Tbear - Nathan shouldn't have a problem with the test if it's like electrical work. He's the type to stick his finger in the socket to see if it's live!!! :)

Timshelper - haven't heard from you lately, are you doing okay? If you have posted and I missed it then I apologzie. I've been having trouble keeping things straight here now that so many are posting (that's a good thing).
The other "problem" I'm having is that my kitten of 7 months has just discovered the novelty of my computer screen and all the blinking lights etc. She likes to sit exactly in the middle of the screen and paw at all the stuff. I keep moving her but I think it's interrupting my concentration!!! :lol: She is the cutest though.

Glad to see more of you Theresa. Carol, I will definitely take you up on your offer when the time is right. One of the things I am checking on is insurance coverage in Canada. There is also the Farmington Hills Doctor you mentioned awhile back and we apparantly have a couple of good ALS clinics in Detroit and Ann Arbor. I'm also working on a list of questions/comments for the Doctor Tuesday. That should at least give me something to work from. I guess that's all for now. -me-

[TBear]

Al:
I think I can handle rum again. If anybody has been to Barbados and taken the Jolly Roger Fun Cruise, you'll understand why I can't look rum in the face anymore... and the mere thought of rum punch starts my head rotating. I think that I'll spin out of here now.

T.

[Carol Deboer]

Hey Guys,

How is everyone tonight? Ted, I have been on the same rum run boat specials. One in St. Thomas Virgin Islands, and one in Mexico. I was sitting on the roof and slid right off!! I lost my balance , thats my story and I'm sticking to it. ha.. It had nothing to do with the 100 proof rum, I promise. Looking forward to doing it again some day. Anyone, want to go with me? ha.....

Carol

[Al]

Hi Melissa. The EMG is one test. They shock you with little electrodes and the Nerve conduction is the one where they stick the needles in your muscles. They move them around and watch the squiggles on the computer screen and the noise sounds like static on the TV. They might be both done as the EMG but I thought they were 2 different tests.

Did the rum cruise in Jamaica. We passed by the hotels in Montego Bay on the way back and about 10 of us mooned everyone on the beach. Yup rum is good stuff.

As for missing posts Melissa and for the new people here a small lesson on what I have learned about navigating this site. When going to the ALS Society home page and clicking on Quick Links and then discussion forum the page will open up showing the different forums. If you click on the message on the right side of the page it will take you to the last topic and message on that page. If there is only one message look at the bottom of the page and go back to previous page. OR when you get to the forums page click on General Chatter on the left and it will take you to the last messages for the last bunch of topics. You can look at the dates on the right and see when someone has posted a message on all the subjucts.

The same applies if you get the automated reply in your email mail box. Click on the link and it will take you back to the reply to your message and then click General Chatter at the top of the page.
I missed a few posts for a while so hope this helps someone. Take care.
Al.

[Retrobabeuk]

[quote:fc60945403="DebbieD"]i've volunteered to take part in study of stemcell research at sunnybrook. Dr Cashman has got full funding and needs 5 volunteers and someone to head the study. i'm volunteer number 4. this is not embryonic stem cells. the stemcells come from our own bodies. is anyone else in the toronto area interested? i thought i'd put the word out! :D[/quote:fc60945403]

hi is this for spinal cord injuries - im really desperate!

[Al]

No I'm sorry it is for ALS or I think they call it Motor Neuron Disease over there. If it is successful I am sure others will attempt to use it for other uses such as spinal cord injuries and other wasting diseases. It will take time though. This trial is expected to take 6 months and if it works they will try it on a larger group. I would not expect to see it widely used for a few years yet. Have you heard of the Doctor in China using embryonic stem cells to treat spinal cord injuries?

[TBear]

... you check out the Chinese program by googling Huang Hongyun. He's the Neurologist that's been transplanting stem cells. there's a lot of information there... and, of course the requisite controversy over the use of embryonic strem cells.

T.

[DebbieD]

dr. cashman has all the required volunteers that he needs. he's now awaiting some protocols. i remembered when my mom was waiting on protocols to receive the drug that she had volunteered to try. she finally received the drug the week before she died. now they are having very good results with this drug in combo with riluzole in north america and in europe. it's still part of a drug study.

good news is dr. neil hopes we'll be starting the stemcell trials in the new year!

[Theresa2004]

Hi Debbie, what was the drug they wanted to try on your mother and are having some success with now?

How do they decide who can be a part of the stem cell trials, and do they have to do any/extensive testing before hand?

Just kinda wondering.

[Retrobabeuk]

[quote:2406a36a12="TBear"]... you check out the Chinese program by googling Huang Hongyun. He's the Neurologist that's been transplanting stem cells. there's a lot of information there... and, of course the requisite controversy over the use of embryonic strem cells.

T.[/quote:2406a36a12]

Hey,

thanks ever so much

GOOD LUCK GUYS

x

[DebbieD]

theresa, i just volunteered and there were two spots left at the time. i had volunteered when my mom was still alive, but only people with als can participate in the study. no testing has been done on me yet.

the drug my mother tried was put out by Novartis. TCH and then some numbers. there wasn't a name for the drug yet.

[Theresa2004]

thanks Debbie, I hope when the time comes you begin this, you will keep everyone informed.
It certainly could be a tremendous break through.
Can't wait to hear more.

[DebbieD]

i'll definitely keep you up-to-date!! i feel really excited about this!