just an update on my progress
-
-
March 7, 2010 at 11:37 am
[FONT=”Microsoft Sans Serif”]hello all,
i just wanted to give an update, now that the dust has settled.
i continue to improve exponentially since my stem cell transplant. once the cidp was halted, i just continue to improve in all areas: strength, sensation and pain… my hair is back and my labs are normal. i am really hoping to get back to work this year– just need a little more healing to occur so that i can pass the physical standards of the police department.
my friend jim got his transplant this past wednesday and is doing fantastically! he too got through the protocol without much difficulty– no vomiting, etc. on the oncology ward, where jim is and i was, we had the opportunity to meet others going through the protocol for both cidp and MS. needless to say, we look the healthiest on the ward as most folks there have cancers, mostly blood cancers…
for anyone interested, facebook cidp: [url]http://www.facebook.com/group.php?gid=2532731679[/url] has people that have both completed the program as well as a guy named mike, the founder of the site, who is himself in the midst of the treatment– in his case, in canada! mike posts everyday on his experience– he is about 10 days post transplant and is currently watching his numbers/counts rise…
hope everyone is well!
alice[/FONT] -
March 7, 2010 at 3:07 pm
thanks for sharing. Do you know where in Canada Mike is?
I am not on facebook so I can’t look it up.
Rhonda from Canada
-
March 7, 2010 at 3:27 pm
[FONT=”Microsoft Sans Serif”]he is in ottowa rhonda…
and his last name is herberle-[/FONT] -
March 7, 2010 at 3:46 pm
[FONT=”Microsoft Sans Serif”]i logged out of facebook to see if you need to have an account to view the postings and apparently you don’t! i surmise because the privacy setting has been set to “open.”
so if you copy and paste this link, you should be able to view mike’s progress entitled, “my stem cell experience.” [url]http://www.facebook.com/topic.php?uid=2532731679&topic=12106[/url]
this will take you directly to his daily postings.
best,
alice[/FONT] -
March 7, 2010 at 9:37 pm
Hi Alice,
I was glad to hear the update on your progress. I can’t wait unitil you’re back on the job again. All my positive energy is flowing your way and keep up the good work.
I was also glad to hear about Mike and Jim. I think a whole new era of stem cell transplants is right ahead of us, and you helped pave the way!
Give my regard to Sophie and all those pooches! -
March 7, 2010 at 9:44 pm
[FONT=”Microsoft Sans Serif”]katyk– thanks so much for your kind words…
[/FONT] -
March 8, 2010 at 8:43 am
Alice,
I am delighted to read/hear that you just keep getting better and better! I am so excited for Jim and Mike and all those going through this (and similar) programs. Every one of you are trail blazers!!!! It is so exciting to read about all the success stories on Facebook – wish more would post their success here in this forum, but am happy to read about it wherever I can!!!!! 🙂
-
March 8, 2010 at 9:40 pm
Alice,
Thanks for the update. I’m glad things are going so well for you Mike and Jim. Please continue to keep us informed. Sorry about the fur ball.
-
March 8, 2010 at 9:58 pm
[FONT=”Microsoft Sans Serif”]thanks jim– i have to ask though, and maybe i’m slow 😉 but what do you mean by “sorry about the fur ball?”
incidentally, i had ncv and emg’s today at northwestern and the improvement was vast! it was such a nice feeling to have what i have been feeling quantified… the neurologists said i have improved exponentially since my last tests in september, just prior to my transplant. they also said that the improvement thus far dictates a strong probability that there will be continued remyelinization…
gosh, i wish this kind of healing for everyone, i really do– [/FONT]
-
March 12, 2010 at 10:12 am
Alice I am just so excited for you!!! I so badly want Ryan to do the stem cell transplant but he is being cautious about it. Not because he doesnt want to do it but because we fought so hard and for so long to do the cytoxan he doesn’t want to be preceived as a treament jumper.. if there is such a thing.
However with that said Ryan see’s Dr Lewis on April 5th and we do plan to ask him if he is keeping up on Dr Burt’s trial and what he thinks about it and if he thinks it would be a good treatment for Ryan. we really want to know where he stands on the SCT. I personally think that he will know lots about it and I also think he will be ok with it because he is so up on all of the stuff for CIDP and he is so aggressive in treating it.
If he is ok with it then we will talk about ryan and that treatment and if he thinks ryan should try it now or wait and see if the cytoxan can put him into remission. If he isnt ok with it, then we will see if the cytoxan worked or not and we will do the SCT if he relapses after cytoxan.
we want to keep a really good standing with DR Lewis because we absolutely love him. he is so knowledgeable and he has taken such great care of Ryan.
But we will find out in April what his thoughts are on the subject and go from there.
Are you still in Chi- Town (that;s what we call Chicago) lol
-
March 14, 2010 at 5:17 pm
hey rhonda,
your plan of action sounds sensible… best of luck with remission sooner rather than later with ryan.
i’m in florida for a few days as my uncle passed away… he was 85 and it was expected…
heading back to chi town in a couple of days…
talk soon– alice
-
March 14, 2010 at 5:19 pm
[FONT=”Microsoft Sans Serif”]hey rhonda,
your plan of action sounds sensible… best of luck with remission sooner rather than later with ryan.
i’m in florida for a few days as my uncle passed away… he was 85 and it was expected…
heading back to chi town in a couple of days…
talk soon– alice[/FONT]
-
March 14, 2010 at 5:33 pm
Alice,
Sent you a PM about the meaning of ‘fur ball’ – old fighter jock term -
March 14, 2010 at 10:42 pm
Hey Alice,
The weather here is actually warmer than Florida, go figure? If you are coming back Sat it is going to be cold.. If you make it back for St. Patty’s day, you guys have to go to watch the dyeing of th chicago river green. If you ar up to it, lot’s of bars on Rush that are Irish. -
March 14, 2010 at 11:18 pm
[FONT=”Microsoft Sans Serif”]thanks for the tips!:)
i will be back in sunny chicago tuesday or wednesday–
hope all is well with you and yours.
alice[/FONT]
-
