Status
Not open for further replies.

TedH5

Very helpful member
Joined
May 17, 2010
Messages
1,142
Reason
PALS
Diagnosis
08/2010
Country
US
State
GA
City
McDonough
Well I had my first visit to the ALS clinic at Emory U today. First I will just get out of the way the fact that unfortunately Dr. Glass confirmed my diagnosis. What an exhausting day, appt lasted for 6 hours! That being said what a great team of people. They were so helpful, and informative and supportive. Nicole is absolutely amazing! It was definitely emotionally, mentally and physically draining. They talked to me about a couple of diffent trials they would like me to consider, one is the stem cell trial and one is Ceftriaxone. A lot to think about. I obviously do not have to do either but if I so choose I can only do one. They also want me to participate in this bio marker study which I can do concurrent with either of the clinical trials if I decide to do it. I told them I would definitely do the bio marker study and already gave them blood, they also want blood from my parents and I would have to give cerebral fluid a few times a year. Small price to pay to aid in research.
I want to do one of the two clinical trials just not sure which one. I figure even if it does not help me hopefully it will help someone else. I know there are no guarantees and inherent dangers but someone had to be he first person on the moon. There is also a very altruistic appeal to me. I know I am rambling, just so much on my mind and my head is still spinning from everyone my wife and I met and spoke with today.
Thanks for providing me with this forum to come for support and someplace just to express my thoughts. It means a lot to me and you are all amazing people that I admire and appreciate dearly!
Thanks again for listening - Ted
 
Ted, I am so glad you had a good clinic visit, it is so important to feel comfortable with your doctors and the rest of the clinic staff. Can't give you any help in deciding which study to participate in but i know that whichever way you go it will be the right decision.

As far as rambling is concerned, dis is de place!
 
Thanks for the kind words and the support Barry! I was nervous about going to the clinic but felt much better about it after the visit!

I am glad "dis is de place"...what a great place all of you make it!
 
Les felt so good in doing his first research trial. This was a short Phase 1 safety trial, and entailed 4 trips to the clinic in a week, with one overnight stay. The clinic is a 4 and half hour drive each way, and the traveling was tough, but well worth it! A good clinic wonderful!
 
Ted, sorry the diagnosis didn't change, but very glad you have such good people working with you, and have found where you want to be seen. And, yes, this is the place for sharing.
 
We would love to have done the ceftriaxone trial at Vanderbilt, but my husband had a very hard time with IV infusions, so it wasn't a good choice. I'm glad you are happy with your clinic. That really is important. I'm so sorry about the confirmation of your diagnosis, but we are glad to have you here. Take care.
 
Thanks again everyone, you are all so encouraging. I didn't expect the diagnosis to change but every time you hear them say it, it is still difficult. Of course look who I am talking to! I am preaching to the choir! I hope everyone has a wonderful and beautiful day! The nurse coordinator made a comment yesterday that is definitely true about everyone on here. She said that sometimes it seems like you have to have a "nice gene" in order to get ALS because they work with so many amazing people with wonderful outlooks and dispositions. That is definitely true of the people on this forum! God Bless you all!
 
Hay Ted, I would go for the stem cell trial, but I would definitely want to have more details.I'm not saying you choose it, I just know I would.Do you have anymore information? I also wanted to say in this public venue, that you have been so kind, helpful and fun for me since your (unfortunate) arrival. I know I am grateful for your being around,wish you weren't sick(wish none of us were), but people like you sure make life pleasant. Your snotty(private joke) friend, Charlotte
 
The stem cell is research is only in Phase I. Cefletrione is in Phase 4 which means they have seen positive results. Of course, with stem cell, there is no placebo. Both are invasive (heavy, continuous IV treatments is invasive).
 
Yes it is true that the stem cell is only in Phase I and their is no guarantee that my cells would match up with the cell line they are utilizing, but it is a high risk with a potential high reward scenario. Of course as the Dr said they could kill me on the operating table as well! technically they are only testing that the surgery is safe, because the procedure itself is experimental, that being said you still get the stem cells which showed pomise in mice. Of course I am not a mouse!

Charlotte thanks for the kind words. As Barry always says we are all in this together! So I figure we might as well support each other!
 
And someone has to do the Phase 1 to get it to Phase 2. A lot of trials only want people who are early on in this disease. I believe the Ceft trial states that you can not do it if you have had ALS symptoms for 3 yrs.
 
I think I would try Ceflexitrione first, then do the stem cell. Maybe then it will be in Phase II.
 
Doing the Ceflexitrione would disqualify me from doing the stem cell trials...I agree hat someone has to be first. Building the Space Shuttle is no good if you can not fill it with astronauts! Easy to see which direction I am leaning but my mind is not made up yet.
Thanks for all of the feedback! I appreciate it!
 
Ted, I'm hoping for super conditions for your blast off into this new venture. You are a true pioneer and inspiration!
 
Hi Ted, Sorry to hear that the diagnosis remains. It really is so true what the nurse said about having to have a good gene. From my time spent getting to know people on this forum, I'd agree whole-heartedly. There's gotta be a bigger plan! You are all too special.
Just wanted to say, as Ive said before, Im here, if you need! :wink:
 
Status
Not open for further replies.
Back
Top