rebooting at JHH

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

Re: rebooting at JHH

Postby 777 » Wed May 14, 2008 2:32 pm

Davis wrote:As of May 6,2008 I will be at JHH for the HiCy treatment for MS.
My intention is to try and keep those interested informed of the procedure and my experience with the procedure.

5/6/08

At 7:15 am I went to JHH The email that I received prior to leaving Chicago was detailed and gave step by step instructions. First I signed in and was issued an orange card which one sweeps at specific stations. This tracks you through your appointments. My next appointment, at 8:00 am, was for a blood draw. They were on time. The blood draw was easy and took about 20 minutes. My next appointment was at 9:00 am with Dr. Brodsky. He explained the pros and cons and answered any questions. He spent as much time with me as was needed. He was easy to talk with and explained in detail any issue or question that was presented.
End of day one.

Davis

5/7/08

Today, day two of the procedure, I had two appointments. The orange card is swiped and a printout reminds you of what to do and when. My first appointment was with Dr. Hesdorffer. He is knowledgeable, warm and friendly. He answered all of my questions and added details and facts that apply only to MS patients taking cytoxan. He indicated for MS patients, for most of us, that the body responds quickly to the drug and reboots itself as per the information that all MS patients received. That was reassuring to hear.

My next appointment was at in patient out patient services (IPOP). Some information, wipes, and informational papers were given and gone over with me. However, while waiting to be called, Melissa was sitting next to me. I met Jamie as well. They are doing very well. She indicated that she feels things are on schedule and so far it is not that bad nor has she been that cytoxan sick.

Tomorrow I get the port and well be admitted for the first cytoxan infusion.

I will update after I return from the hospital.

Davis



5/12/08

I am back from the chemo treatment.
Thursday the line was put in. That was easily tolerated for me.
Thursday night was first dose of chemo.
All went well.
Same for Fri.. Sat., and Sun. Each dose takes about one hour.
Other drugs were given as well as hydration.
Blood and vital signs were taken often.
They weight you as well to make sure what is going in comes out
Staff was great. Everyone in the hospital was pleasant.
I was discharged Sunday at 6:15 pm.
I have prescriptions to fill and an appointment at IPOP at 11:00 am. today.
I tolerated the chemo with very few side effects. A very little nausea and loss of desire for food. Nothing else.
Davis



5/12/08 PM.


I returned from my first IPOP appointment.
Meet with a nurse she took my vitals, weight and drew blood.
At that point you have to wait for the blood test results.
Then you meet with your nurse coordinator. Then she writes any new prescriptions that are needed.
The entire process took about two hours.
Tomorrow I have the day off. My next appointment is on Wednesday.
At this point I have 24 hours left before the chemo drug is out of my system.

There is no improvement in my MS symptoms. Just wanted to let you know because that is what everyone wants to hear about.


Davis

Wed. 5/14/08

I went to IPOP today. I had my weight, vitals and blood draw. My numbers that the nurse tracks are slowly falling. That is a good thing.
Some of my meds were adjusted.
Some of my MS symptoms are lessening but that happened on a daily basis before the HiCy. I will wait and see if this is temporary or permanent. My energy level is good and food is something that is still not very appealing., I have Thursday off, so on Friday they will decide what to do next based on my numbers.

Davis


I am confused, I thought we all have to go for a prelimary eval visit and then fly back home and then back for treatment?
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Postby Jamie » Wed May 14, 2008 2:41 pm

You do.

All this is post-prelim.
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Postby Lyon » Wed May 14, 2008 3:12 pm

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Postby chrishasms » Thu May 15, 2008 4:51 am

Can I copy and paste that on my site or would that be stepping on some big 'ol toes?
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Postby chrishasms » Thu May 15, 2008 5:13 am

I wanted to comment on the 5 year thing.

I don't understand. If you do HiCy you can't participate in any other trials for 5 years? I missed that but it seems fair.

I figure it this way; I had to jump through a couple of hoops, call the coordinator about 30 times, drive my cycle through a flaming hoop, and get told I was doing everything wrong medically by the Doctors office I went to.
This is referring to the HELL I went through to even get seen for the Tovaxin trial. Then I was told no anyhow.

This was real easy unlike getting into a clinical trial. I called Carrie, sent them my MRI, saw them once, had my insurance go through, went had the treatment, was asked then after the treatment if they could use my Data in the upcoming phase3 trial which I said yes to, and now I'm getting better. No placebo's or any fake outs. I got the real deal.

I was shocked by the fact I will be used in the trial but there really isn't a set number of people needed. If the people want to do the treatment why not use the data? Eventually the numbers will be met and then the data can just be plugged in. It may shrink the length of time it takes to hit the open market.

I spent a large large large amount of time during the year between Tovaxin and HiCy buried in www.clinicaltrials.gov looking at every MS trial recruiting. Most had nothing to do with getting better. The ones that did were in 1 site in BF Egypt recruiting 10-15 people. That means it will be 5 years easy before there is any hope of multi center testing IF it even works. Plus it is not covered by insurance so you pay for it all. I believe Tim was shot up in 2001 pr 2003 with Tovaxin...I forget...but it's now 2008 and Tovaxin is Phase IIb. That is 5-7 years so whats the loss.

I assure you folks there is nothing besides Tovaxin that has as much research and is as close to being available as these two options. It will be 10 years...I guarantee it...before another drug will be close to being released that can offer what HiCy and Tovaxin can.

Most of the 85% of the RRMS just don't want to have this disease eat at them behind the scenes that long. One day you wake up walking and the next day you wake up like me. Not able to walk normal and you never ever do again.

Folks please please please....if you have Active MS and don't want it anymore please please please just call Carrie.

All these people are going through this treatment and I am so jealous because I'm the only one who got sick! lol
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Postby 777 » Thu May 15, 2008 5:24 am

When I talked to carrie a couple weeks ago she said they are going to start stem cell treatments unlike the ones currently offered. I am waiting for my appt to see which treatment they recommend.

My neuro I see here is pushing tysabri on me, to the point where I am getting offended. He tells me I could die with the the hicy and refuses to discuss this treatment with me.

By the way, what doctors do we see when we return home? What if I get sick? is just my pcp that I see or my neuro?
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Postby chrishasms » Thu May 15, 2008 5:43 am

Well my Neuro's were so close minded I don't go to them anymore. My Docs are Dr. Kerr and Dr. Hammond at JH now for Neuro.

They can order all the stuff you need and they can look at results long distance if need be. I'm just lucky enough I ca make it there to MD on month 3,6,12, and 24 so it works well for me.

If I had to go to your neuro I would get the treatment, then at your next neuro visit I would tell him he is to inspect me and then not to talk to me about anything medically related because he didn't help me one damn bit.

My neuro was cool and thought it was wild. He ordered my MRI. He wished me luck but like I said, I did all the leg work not him. It was up to me to be on the cutting edge.

I go to my GP once a month to have my blood work done. The biggest chance of getting sick is during the 21 days after the treatment. By the time you are a month out you then have a newborns immune system. At three months it's like a 1 year old w/o the vaccinations. It takes no time at all for your immune system to get back and working right. MOST of the population is vaccinated against really bad diseases so you will not get them just by proxy. They will tell you don't go to crowded places or to someplace where germs are confined for 6 months. I believe it's at onne year I get all my childhood vaccinations again.

Put it this way; I'll go to the store but you won't catch me running around catching mice in the grain bin.

If you don't put yourself in a precarious place for 6 months you will be fine. If you catch something more than likely your immune system will fight it off. HiCy caught a cold and he was fine. It's not nearly as bad as you think. You don't even feel like your immune system is gone. Just a bit tired for a month.

Your GP will play ball if your Neuro won't. I haven't met a GP yet who isn't absolutely fascinated with the fact I don't have MS anymore. In fact my new GP is so cool with all this they let me make all my appt's needed for blood work for the next year! Just tell them what you are doing and they will love to watch you get better.

No neuro wants to watch his bankroll thats rolling in go walking out. Remember that.
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Postby 777 » Thu May 15, 2008 6:15 am

How about children? I have a 2 year old and a 11 week old. I dont want to leave them for a month. The only people who are able to care for them are older and not good with kids ( yes out parents) lol but then just cant keep up. Plus I dont want to leave them.

I havent discussed this yet with the doctors, do I have to stay away from children while I am in baltimore? I read that jamie and mel have a dog with them. I think having a dog is far worse than children, but I could be wrong.
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Postby chrishasms » Thu May 15, 2008 6:23 am

Per protocol you have to have someone of age with you 24/7 for 25 days you are there. The kids can be there I'm sure but they need to know Mom is gonna suck for a month.

Yes, a dog is worse. I was shocked to hear about Fido going with too.

I worked in a school district as the traveling computer guy so I know I can't go back to work for a good chunk of time lol. Lil rug rats around December would kill me lol.
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Postby Lyon » Thu May 15, 2008 6:57 am

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Postby Jamie » Thu May 15, 2008 8:02 am

We asked about the dog.

It's fine as long as the patient doesn't clean up after it and washes hands after petting, no 'kisses'.

Being careful and using your commonsense is the key.

All these questions can be answered by Carrie.
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Postby Jamie » Thu May 15, 2008 8:10 am

Also - a dog is far worse?

Again, can we please stick to facts not speculation?

Don't scare people off who can't leave a dog - to many people (not me) a dog is as important to them as a child - not taking a dog could be a deal breaker. Sounds stupid but people are people.

The chances of catching an infection from a different SPECIES are of course lower than an infected member of your own species i.e. child. Some bugs do cross of course.

In fact Spanky got an ear/eye infection that required antibiotics and steroids whilst we were there and Mel was fine. Again, just be careful, no licking the face and wash hands after touching.

From the questions I've been emailed and PM'd since writing the blog I've become hyper-sensitive to throw away comments such as the one above not backed by any science - I've made what I considered unimportant asides in my blog and had a flurry of emails from people asking for clarification or their mind setting at ease.

If I hadn't challenged 777 and Chris then someone (and you'd be bloody amazed as to just HOW MANY people are reading this) could think 'taking my dog is dangerous, I can't leave my dog, ergo I can't have treatment'.
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Postby chrishasms » Thu May 15, 2008 9:27 am

Hey I figured JH said it was OK.

I'm just going by what Dr. Fitzgerald from Alameda East here in Denver (Emergency Vets on Animal Planet)said on the morning news the other day.

The reporter Tom Green from WB2 news morning show straight up asked him if Dogs were dirtier than humans and germier. His exact response was, "Well think about that and think about what you've seen in your dogs mouth, and where your dog has been. Of course they are."

I know they wouldn't let me go outside and lay in the dirt so I figured I couldn't have a animal with me that could. I just assumed. But like I said, if JH says it's cool than it is definitely cool.
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Postby chrishasms » Thu May 15, 2008 9:29 am

Hey I figured JH said it was OK.

I'm just going by what Dr. Fitzgerald from Alameda East here in Denver (Emergency Vets on Animal Planet)said on the morning news the other day.

The reporter Tom Green from WB2 news morning show straight up asked him if Dogs were dirtier than humans and germier. His exact response was, "Well think about that and think about what you've seen in your dogs mouth, and where your dog has been. Of course they are."

I know they wouldn't let me go outside and lay in the dirt so I figured I couldn't have a animal with me that could. I just assumed. But like I said, if JH says it's cool than it is definitely cool.
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Postby Jamie » Thu May 15, 2008 9:32 am

True! I'm not saying a dog is cleaner than a child! If my kid smelled like Spanky right now it'd be taken off me!

But a child is more likely to have/transmit infections that humans are susceptible to than a dog.

That's why the avian flu is such a story, once it starts to transmit easily to humans and more importantly human to human contact then we've got a problem on the biblical scale.
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