Baltimore in May?

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

Baltimore in May?

Postby RedPenguins » Sun Apr 19, 2009 8:19 pm

Hi,

Looks like my re-dose is going to have happen in early May.

Anyone visiting Hopkins in May? Wanna visit me, too?

As of now, the 4 days that are in-patient receiving chemo, I will be there alone. :(

I'm scared as heck this time as someone told me that the cytoxin has a cumulative effect. I didn't get sick at all last time and it worried me that they didn't give me enough of the stuff! Now I'm afraid of getting sick or not getting sick (can't win either way, huh?). Trying to stay calm and collected, but definitely thinking I may get sick this time. Scary.

Chris - do you know anyone else who is having the treatment soon?? Is anyone having it these days?? Why is it so quiet around here?

~Keri
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Postby scorpion » Mon Apr 20, 2009 3:47 am

Hey Keri,

I am glad to hear that you have a set date but sorry to hear of the anxiety your decision is causing you. I have not had the procedure but I frequently check this forum to see how everyone is doing. Remember that you are going to JH which has some of the BEST doctors in the world. These doctors believe they can either halt the progression of your ms or even cure you of this crappy disease with a second dose of revimmune. I can not think of a better place to go than JH to take the gloves off and fight this thing. Instead of focusing on the brief sickness the procedure may cause you, focus on the thought that you MAY be actually going to get better(fingers crossed)! We will all be here to try and keep your spirits up and keep the positive energy flowing your way!
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Postby chrishasms » Mon Apr 20, 2009 8:34 am

I hear via email from some of the folks. I look but don't say much anymore. All of us who got this, except for you unfortunately so far, have pretty much gotten back to life. I go to PT 5 days a week, and lately have been helping some folks I met at PT get all there ducks in a row to go to JH for the treatment. One person has already gotten the OK.

I have started posting to my site again and been keeping track of my progress there. I quit showing off to most of the people here because they don't want to see someone getting better from Revimmune. They want to hear someone doing bad so they can say I told you so and I just refuse to be that guy.

Cytoxan has an accumulative affect if they give it in the pulsed version. There is no accumulative effect when it is given in this format because it is completely out of your system within 48 hours where the pulsed version takes months and months to get out of you if ever. Dr. B told me this.

Talk to Dr. B. He'll tell you the same thing. You are the second person who has needed to be redosed, and the first from the 29 done in this trial. Your doctors said you had something super aggressive so don't be discouraged that you may need to blast it 2 times.

I suggest this time, before you go, you have your vitamin D at 30 or better, and you start taking at least 2000iu of Vitamin D a day after the treatment. The folks at Rush are using Vitamin D instead of Copaxone. Since I started taking the Vitamin D right after that little lesion in November...everything has righted itself and I am continuing to improve.

I walked at 1.0 miles an hour for 15 minutes on Fri. Considering I couldn't walk to the bathroom to pee last March, I would say the treatment is a success.

Don't be scared. Hell, it's old hat now right?
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Postby scorpion » Mon Apr 20, 2009 4:17 pm

Chris I completely disagree with you. I have read your posts with great interest and thank you for keeping us all updated on your progress. However I seriously doubt that ANY of us with MS hope that ANY treatment fails. That just does not make sense. I think that what you do not want to hear is any question or thought that challenges your premise that revimmune has cured your MS. People wishing the treatment fails? NO WAY. It is wonderful to hear that everyone, besides Kerri(who will kick its butt with her next treatment!!!) has had a favorable outcome!! Please keep the positive news coming Chris.
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Postby chrishasms » Mon Apr 20, 2009 6:25 pm

No I assure you there are those who are patiently waiting for me to nose dive. Maybe not the treatment but me. It's why I keep most of the good news to my site. In fact I help those who want it but I have quit going out of my way to try to get people on board. It may offend some but I assure you you can only help those who want your help.
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Postby chrishasms » Mon Apr 20, 2009 6:33 pm

Back to other things...I really want Keri to kick some serious butt. I will be so mad at her if she doesn't get sick this time lol!
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Postby patientx » Tue Apr 21, 2009 5:27 am

Keri,

check your pm.
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Postby Lyon » Tue Apr 21, 2009 2:07 pm

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Last edited by Lyon on Sat Nov 26, 2011 12:40 pm, edited 1 time in total.
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Postby chrishasms » Wed Apr 22, 2009 6:14 am

I don't know why I am so convinced you need to get sick for it to work, or, if I am just jealous because I and everyone else got sick but her and I want her to have the full experience this time lol.

Keri I along with all your other brethren feel positive it will get this monster this time.
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Postby Jamie » Wed Apr 22, 2009 7:46 pm

Whilst I often disagree with Chris's delivery, I certainly agree with his message.

Drs B ad K know what they are doing now, 2nd redose from 20+ people, damn those odds are good.

The speed of Kerri's MS response and decline indicates very aggressive, though still (thankfully) RRMS, some Campath people need two goes, it stands to reason some HiCy people need two goes.

I can only speak for myself and for a lesser extent Mel, but if (god forbid) this nightmare started again (for better or worse I have almost forgotten about her MS on a minute to minute basis) she'd almost certainly redose.

It will almost certainly work but if worse case scenario (atheist prayers) it doesn't work then at least you will have given it everything.

I don't often intimate on here just how lucky we are. i think about other peoples situations and I'm not ashamed to admit, I cry. My tears are hot tears of fear and cool tears of gratitude. I imagine what would have happened if Mel had continued upon her path.

My eloquence has deserted me, I just want to send well wishes to everyone touched by MS. I have no agenda, just hope.
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Postby RedPenguins » Wed Apr 22, 2009 11:04 pm

Thank you, everyone.

Jaime - you are right and I am willingly re-dosing....

and hoping, in some strange way, that I get sick.

I'm all set....

Arrive in Baltimore and meet with docs on May 5... Enter hospital on May 7th.

Just made my plane reservations and those for my caregivers as well.

Totally bummed as the apt I stayed at last time is not available. It was a perfect location - Whole Foods and CVS on the corner! Now we'll be in Fells Point. Oh well, I'm sure it will be fine. Oh, and the rental place does NOT offer shuttle service, so now we're renting a car for the entire stay. Double sigh.

Nothing has gone easy with the planning this time around....but hopefully it will all smooth out soon.

Went for blood work and urinalysis today. Going for Sinus CT, Chest CT, and Chest X-rays on Friday. Waiting to hear back about appointment for echo and ekg.

I can't believe I leave so soon (leaving on May 4th, Monday, on redeye).

If you're of the praying type, please keep me in your prayers,

~Keri
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Postby chrishasms » Thu Apr 23, 2009 6:35 am

Your in luck! I will put you on our churches prayer dedication forum message board. They do wonders for me!

Is it true that 20+ people have had to redose? Last I heard about 3-6 months ago there was 1 person.

Still I agree, if I had this beast come back, I too would be on a red-eye to do this again.

Keri hang in there! You have a whole crew wishing you the best.

About my delivery...at 14 years of age when my mom tried to commit suicide with me watching I decided then and there never to mince my words and to tell it exactly as I see it. It's saved me a lifetime of setups, letdowns, and disappointment. I never have to worry about people or what they think of me. I have plenty of friends too. Either you are on board or your not and no one ever has to ask where I am.
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Postby mommasan » Thu Apr 23, 2009 7:00 am

Keri, my thoughts and prayers are with you. It must be so unbelievably hard to be doing this again. I can't even imagine the swell of mixed emotions you are feeling at this time. Even when I was going thru treatment I kept saying to myself, "I can't believe I am doing this." But, you did and I am sure you will get thru it day to day this time, no matter what. I don't think you need to get sick for it to work. But, I sure am praying for your white count to get really down in the dumps this time.

If you can, try to post while you are at Baltimore. I would sure love to hear how it is going.

Sandy
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Postby pvns2005 » Tue May 05, 2009 6:12 am

Keri, good luck with your redose. Sorry we aren't going to be neighbors this time. Val sends you best wishes and knows it's going to work this time. I hope evrything goes good this time around. Tell Kyle I said hi.

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Postby barbbelle » Tue May 05, 2009 7:51 am

Hey Keri!
Just wanted to let you know that i'm thinking and praying for you girl! I'm so hoping for a great outcome. Know that we are all behind you 100% and anxious to know how you are!
Blessings!
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