How many at JH now?!

A board to discuss Revimmune as a potential therapy for multiple sclerosis

How many at JH now?!

Postby RedPenguins » Thu Jul 10, 2008 7:01 pm

Ohmygosh - I can count 7 people, including myself, that are here in Baltimore right now receiving HiCy! I'm sure there are more - but these are just the ones I've met so far.

We come from Alaska, Los Angeles, Texas, North Carolina, and Alabama.

We are coming from everywhere!

I'm glad I pushed to get in when I did - b/c it looks like they are as busy as they say when it comes to the wait.

We are at various stages of the treatment right now.

It's so amazing to see. And EVERYONE here is wonderful. From the nurses to the cleaning people to the strangers you meet....it's quite amazing.

:)

~Keri
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Postby CureOrBust » Fri Jul 11, 2008 7:12 am

so, no one from overseas?
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Postby Jamie » Fri Jul 11, 2008 8:43 am

That's awesome!
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Postby RedPenguins » Fri Jul 11, 2008 9:43 pm

Kyle - sometimes there are complications - but they are usually known risks. There is a definite risk of infection....and I think the problematic thing with MS is that when someone gets an infection, it can cause an exacerbation (or pseudo)...but still, it can cause a flare-up.

I for one have witnessed someone who has had complications. That person is fine....and was never in jeopardy of death - but MUCH discomfort. However, again, NOTHING life-threatening. Regardless, as I am hitting the neutropenic stage - I am a little nervous. I did go outside today for a short walk and lunch. It was ridiculously hot outside and I had no business walking in that heat...but I did. Then I came home and slept for hours. No more outside ventures for me - other than to IPOP, which should now be daily starting tomorrow.

I still think I feel too good to have undergone chemo.....they told me that I am out of the woods as far as chemo side effects (sickness from the actual cytoxan)...but now I enter the next danger zone. Bring it on!! I'm game!

I hope my numbers are ZERO tomorrow :) And if I felt crappy - that would be good, too.

~Keri
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Postby rainer » Sat Jul 12, 2008 2:48 pm

fingers crossed you feel like crap!
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Postby av8rgirl » Sat Jul 12, 2008 6:04 pm

Glad to hear that you are doing well Keri! Keep posting!!!
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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Postby CureOrBust » Sat Jul 12, 2008 9:39 pm

Glad to hear it has been such a simple process for you.

RedPenguins wrote:I for one have witnessed someone who has had complications. That person is fine....and was never in jeopardy of death - but MUCH discomfort. However, again, NOTHING life-threatening.

Did they have an infection? This is something that worries me, as an infection is basically my only trigger for a relapse. What happened to the person? Is it thought to comprimise the treatment result>

RedPenguins wrote:Regardless, as I am hitting the neutropenic stage - I am a little nervous.
For those of us not that familiar with the process, could you tell me what that is please?
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Postby Lyon » Mon Jul 14, 2008 5:14 am

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Last edited by Lyon on Wed Jun 22, 2011 7:18 pm, edited 1 time in total.
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Postby RedPenguins » Mon Jul 14, 2008 1:06 pm

Cure, I think Bob answered your question.

Once my white blood count hit below 100, I am considered neutropenic - as my neutrophils are at zero. Most susceptible to anything and everything - and as such, I am on meds to prevent as much as possible: antibiotic, anti-virals, anti-fungals, etc. Wash hands a lot, not allowed in crowds, when I leave the hospital, I must wear a mask, things like that.

I understand your concern - and from what I can tell - yes, when one is neutropenic, a fever can happen - it is quite common...and that can cause one's symptoms to flare-up and make a presence...but it's temporary. If you get a fever, they watch you CLOSELY. If it rises above 100.4, you call in and they may have you come to the hospital to check you out. I met someone today who says her symptoms have been bad, etc. but it is important to remember, I guess, that is would be temporary.

Having an infection or fever - it doesn't compromise the treatment result. The chemo is in - it has done its job - it has killed off your immune system (thus, why you would get the infection!).... This person I referred to did have an infection....and he was on IV meds for a bit...but at this point, even though he was in the hospital nearly a week - it didn't slow down his progress much - he is "better" now - and getting ready to get out of here altogether. His numbers are back.

Thing to remember is - despite things that some have said - you do not get the HiCy and boom, the next morning you're cured. You still have MS. Only time will tell the results. (Just like cancer and chemo, so to speak.) I was outside last week - after the chemo - but before my counts dropped - and it was HOT - and my symptoms were definitely aggravated - I didn't expect anything less than that - it will take time to heal the damage. The person I met today who said she felt her MS symptoms were "worse" the last few days....I doubt she is having an actual exacerbation in the true meaning that the lesions are activated - but it seems like being in this immuno-compromised state has made her symptoms act up quite a bit. At least that is my thought.... same thing for the other person who ended up in the hospital. I don't think his "complications" were from the actual chemo, per se, I think it (the infection) caused his sx to flare up and act out! The same way an infection does that to many people with MS regardless of the hicy!

Does that make any sense?

We do not stay in this neutropenic and vulnerable stage a long time. I had my third dose of the growth factor today...this will stimulate my stem cells into restarting the new immune system....and my counts should come up within a week from now. Actually, apparently, my platelets may continue to drop, but the WBC will come up within a week, hopefully. Thing is - there are no definites - some people's counts come up faster - some slower...same for dropping. It seemed like my counts took long to drop. But now I am where I want to be. I think I may be at my bottom and hopefully, they will all kick-start soon and build up. Can't go home until my immune system is back online!

Cure, I'm not sure I answered your question - and again, you'd always want to confirm this with the doctors - but from the questions I've asked - this is what I got from what I've been told. Hopefully I've conveyed it correctly...

If you are interested at all in this treatment, I say to send your records over to them and then talk to them. They will talk to you - they are all very approachable - and they are the best people to answer your questions.

~Keri
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Postby CureOrBust » Tue Jul 15, 2008 2:03 am

RedPenguins wrote:If you are interested at all in this treatment, I say to send your records over to them and then talk to them. They will talk to you - they are all very approachable - and they are the best people to answer your questions.
I am planning on calling them. I am living in Australia, so it adds that extra hurdle for them and me.

I see my neurologist in two weeks, and I plan to get an appointment with my Immunologist soon as well. I will definitely be discussing this option with both of them. The second appointment is solely for this topic.

I plan on getting a referral for an MRI (the main instigation for seeing my neurologist), but as usual, I am not planning on getting any contrast medium; never have.

When I do call them, who would you suggest I ask for? considering I will not be able to get a call returned due to the time difference.
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HICY

Postby merlin26 » Tue Jul 15, 2008 7:48 am

Yeah, im planning on calling them as well. Tovaxin hasn't really worked for me like i'd hoped so HICY will be my next step. Hey Cure, what part of Australia are you from? I'm torn currently between moving there or New Zeland. New Zeland doesn't have any funnel web spiders so im leaning more towards them at the moment :)
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Postby RedPenguins » Wed Jul 16, 2008 11:40 am

Cure, you should contact Carrie Trecker - I'm sure they'd find a way to contact you regardless of time difference - but email works well, too!

I don't have her info in front of me - but I know Chris has posted it on here many times. Send her an email. People come here from all over the world for treatment.

Also, why no contrast? I'm sure JH will want to see an MRI with contrast...

~Keri
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Postby CureOrBust » Thu Jul 17, 2008 4:24 am

I will go over the existing posts and find the contact details. thanks.

RedPenguins wrote:Also, why no contrast? I'm sure JH will want to see an MRI with contrast...
The reason for no contrast. I have had MS for about15+years, but I was only diagnosed after my first MRI only about 4 years back. It was a head only MRI with no contrast, simply for a diagnosis. At the second (and last) one they offered / suggested it, but I see MRI's for me as more of a long term check rather than an instantaneous snapshot of what is currently inflamed. And I was on a lot of different meds at the time, and I wonder about if it has ANY effect on healing, and I hate needles :oops:
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