Jim’s stem cell success
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March 27, 2010 at 12:36 pm
[FONT=”Microsoft Sans Serif”]as many of you may remember, jim d. has been going through the stem cell transplant program at northwestern as well. sophie and i have been in chicago all winter caring for him. well i thought now’s a good time for an update on his progress–
he was discharged last week and is already out of his wheelchair!! he can walk with and without a walker– albeit short distances, especially if he doesn’t use his walker. his balance has improved and his feeling of general well-being has improved overall. sensation is already returning and his blurred vision is greatly improved. essentially, even at this early juncture, he is doing significantly better.
we will all be heading back to california soon– actually thursday next week.
he too got his insurance to cover it! it just took a little back and forth…
the last several people they have treated are experiencing fantastic results. they seem to have tweaked the protocol such that success is even more assured than when they 1st started treated cidp. adding rituxan and atg, for example…
as a side note– they are pretty much no longer taking folks who are wheelchair bound anymore as they want to treat people before too much damage has occurred… simply, the outcome is so much better if done sooner rather than later.
we are very happy for jim and now rossana!
best to you all,
alice[/FONT] -
March 27, 2010 at 12:57 pm
Thanks for the good news Alice, I’ll be keeping you and Jim in my prayers.
Also, it’s wonderful to hear that they are doing more research on stem cell
and actually looking into the fact of (which I whole-hartingly agree with)
treating this disease before it does too much damage. My insurance co.
so far has denied anymore treatments. I haven’t had one since Feb. 3,
IVIG and boy can I notice the difference!! I do have an appt. April 1 with
head of neuro at W.U. though, I’m hoping he’ll have some ideas. Will let you
know, in the meantime, my thoughts and prayers are with you.
Ms.JudyCIDP w/anti-mag
Dx April, 2009 -
March 27, 2010 at 12:59 pm
I’m so happy for Jim. Stem Cell Therapy will soon be a sign of the times.
Alice you got that ball rolling faster. Now there is more hope than ever for so many. -
March 27, 2010 at 1:14 pm
[FONT=Microsoft Sans Serif]ms. judy,
i am deeply sorry that you are not getting the treatments you need because of ******* insurers… i wish things were different and i’ll keep positive thoughts for you come your next appointment–
best to you and a big hug,
alice[/FONT] -
March 27, 2010 at 3:00 pm
Thanks for the update. I’m glad that approach is working for some people.
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March 27, 2010 at 3:11 pm
That is great news Alice!
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March 27, 2010 at 8:20 pm
I did do a look up on the trial’s protocols, and unfortunately I don’t qualify because of BC and maybe a couple other immune and med issues. Sigh.
For those interested, they are still recruiting and here it is:
URLhttp://clinicaltrials.gov/ct2/show/NCT00278629?term=CIDP+Stem+Cell&rank=1URL
It DOES sound tho? As if some insurance companies are being a bit more progressive than in the past? That is good, must be that the preliminary results are going well. Of course, before it becomes ‘accepted protocol’ a lot of testing and issues will have to be ‘resolved’. As is always the case w/medical stuff. To become ‘accepted practice’ often takes decades, as we’ve learned from the IVIG clinical trials such a short time ago, even tho this has been off-label practice for about 30+ years. Accepted tho, that the stem cell process is a heap more complicated than just IVIG, which is complicated enough, thank you!
I can only wish you pioneers good health and a far better life! Especially the quality aspects.
Hope for one and all, this really could be a clincher! -
March 28, 2010 at 7:25 am
Great news! Thanks alice for the update.
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March 28, 2010 at 8:35 pm
That is great Jim I am so happy for you. Alice you and Sophie are the greatest for going to Chi-town and taking care of Jim. I just wish that we would have been able to come there to meet all of you.
Have a great trip back to CA and keep us updated on JIm. I am just so happy for him.
Rhonda
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March 29, 2010 at 2:52 pm
[FONT=”Microsoft Sans Serif”]here is his blog– he can walk already!
[url]http://www.alicedicroce.com/jim[/url][/FONT] -
March 29, 2010 at 7:35 pm
[B][SIZE=”7″][COLOR=”SeaGreen”]WOWSERS!!!!!!!!!! [COLOR=”seagreen”][/COLOR][/COLOR][/SIZE][/B]
[COLOR=”Black”][SIZE=”2″][B]Also this is good news! Hope on the highway? Or some other phrase that’s stupid but says good thoughts![/B][/SIZE][/COLOR]
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