background
A little known side effect of bone marrow transplant is that some marrow stem cells cross the blood brain barrier, turn into neurons, and integrate into the CNS. Stem cells migrate to damaged areas, drawn by chemical signals. One way to use this is to use the drug Neulasta which kicks stem cells out of the marrow and into the blood. I'm planning to take Neulasta on 1/19/05. It's a time release med which only needs one injection and is released over the next ten days. There's no telling how much of a bounce in strength I may get or how long it may last. It's never been done. For other PALS who may want to do this, the one injection costs US$2600. It's made by Amgen. This is experimental so insurance probably won't pay for it.
posted by Wayne Phillips @ 3:36 AM
8 comments
8 Comments:
Rob Bannister here - I'm always glad to get your reminders and am mindful to pray for you and the family. I continue to wish you well - I'll look forward to updates. Give my best regards to S - D- D-
Hi Wayne,
I'm John McConnell, a Canadian PALS. Someone posted your BLOG on Braintalk, an ALS forum out of Boston ( http://brain.hastypastry.net/forums/forumdisplay.php?f=77 ). I admire your pioneering effort and look forward to your posts. Best of luck with it.
Hi Wayne, I am a PALS and will be watching for your reports. I think your experiment is most interesting. Have you considered adding nerve growth factors to your protocol? Growth factors have been tried in the past without success, but a combination of Neulasta and growth factors.... hmmmmmmmmm... could be interesting.
Good luck.
HarryAZ
I will keep you in my prayers, very interesting thank you for sharing your experience.
God Bless Jean
re: growth factors: I wouldn't know which to take, and I think they don't cross the blood brain barrier well. Maybe someone else can pursue that.
Hi Wayne, I am listing four nerve growth factors with which I am familiar. There are probably more. I don’t think any of these growth factors are publicly available, but have been used for research purposes. The safety of all these growth factors has been demonstrated in earlier clinical trials. Your best bet in obtaining these drugs may be in contacting the manufacturers, who may still have supplies left over from prior trials. Unfortunately, none showed efficacy during their clinical trials, but with your stem cell experiment the odds should improve.
BDNF (Brain Derived Neurotrophic Factor), GDNF (Glial cell line-Derived Neurotrophic Factor), IGF-1 (Insulin Growth Factor), VEGF (Vascular Endothelial Growth Factor). IGF-1 probably shows the most promise, based on the attention it is receiving from researchers.
http://www.clinicaltrials.gov/ct/gui/show/NCT00035815
The following website discusses the first positive result in coaxing embryonic stem to morph into motor neurons.
http://brain.hastypastry.net/forums/showthread.php?p=537074#post537074
I want to email you with more info
HarryAZ
re: growth factors
HarryAZ,
I'm interested in reading about these, email me at wsphillips at compuserve dot com. I've read a lot about them but I may have missed something. I was in the CNTF trial; it failed. Something was nagging me about growth factors. I remembered: evidence shows that extra growth factors aren't needed for this effect to work. At least in non-PALS. And I just don't time or energy to chase sources for them, so I'm content to go without and be "that" data point.
Wayne
Hi Wayne,
Bless you for what you are doing. Not only are you helping and letting people out there with ALS
know they are not alone.
I am sure you are helping the Dr. and scientist with their work in knowing how different drugs work and react..
I don't have ALS but I am a cancer survivor of 2 yrs. and the other people that have cancer jumped right in and talked to me and helped me get throuh the mental stress and treatments. Bless them..... and that is what you are doing.
God bless you and your journey. What you are doing is a blessing.
Love your Cuz, Bev.
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