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Joined: Jan 18, 2008 Posts: 9 Location: Chicago, Illinois
Posted: Fri May 02, 2008 12:55 pm Post subject: rebooting at JHH
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
5/16/08
Today, I returned to IPOP. They take blood, vitals and weight. Based on the results of my blood work I am ready for the next step. Tomorrow, Saturday, I return for a new drug that everyone takes. It is give through one of the ports to begin rebooting the immune system. Based on numbers 2 drugs for infection were removed and replaced with 1.
I have been going to IPOP every other day. Beginning tomorrow I will be going in every day for a while.
My hands still have tingling and pins and needles feelings. My gait and balance at time show improvement. However, they then return to their pre treatment level.
Davis
5/17/08
Today I went in for my first infusion to reboot my system. My blood work showed that my immune levels are significantly depressed
I was infused for 30 minutes with medication. My blood work indicated everything is where it needs to be at this point in the treatment plan.
I return to IPOP tomorrow for the same treatment.
Davis
5/18-19/08
The last two days have been identical.
2 hours per day at IPOP.
They are watching my numbers and looking for my numbers to start going up. They do not expect my numbers to go up until the middle of next week.
MS is about the same. I get a small amount of relief at times but the MS feelings come roaring back.
Davis
5/ 20 - 21/08
I got the rebooting infusions both days. Yesterday my platelets were trailing down . Today when blood was taken it indicated that I needed an infusion of platelets. We will see what happens tomorrow.
Davis
5/22 - 23/08
I did receive the platelets and my counts jumped immediately. The next day the platelet numbers were still up. I am still getting the rebooting drug each time I have an appointment. The numbers have to make a u-turn and mine have not as yet. On 5/23/08 I got two units of blood due to the fact that my red counts were getting near their low levels. They had just done their matching and checked my blood type. So they had what I needed and gave me the blood.
Davis
5/24-25/08
My platelets and blood numbers are holding. My rebooting numbers have not made the u-turn as yet. So I return to IPOP tomorrow waiting for the numbers to jump. I have had 9 infusions so far. The nurse assured me that every one's numbers do make the jump. I have had some better balance and gait movement in the last two days.
I will check back in a few days.
Davis
5/26/08
Today at IPOP my rebooting numbers made the u-turn. They went from <50 to 190. All of my other numbers are stable.
Balance and gait are fairly good also.
Davis
5/27-28/08
My numbers continue to climb. They are stopping some of the meds.
So I expect that I will be finishing up shortly. I am not reporting numbers just progress. If anyone wants numbers let me know.
Davis
5/29/08
My numbers are all good. Most of my meds have been stopped. My port comes out tomorrow. I put a call into Dr. Kerr. Mindy gave me a script for my doctor back home for follow up blood work.
Davis
5/30/08
I had my port/hickman removed this morning. I chose to have it done without meds. It pinched but was painless. All I have is a small bandage over the cut until it heals up.
Chanell has offered to set up a site for me under www.davis.gotHiCy.com, we think. It is not ready yet
6/2/08
Returned home Sunday night. I am tired. On Monday set up a doctors appointment for blood test , first one, on Friday. I am not on any meds at this time for the HiCy procedure.
If there are any questions I am not answering be sure to ask.
Davis
6/15/08
First blood test indicated platelet count mildly high and HGB mildly low. Everything else was in the normal range.
Davis
6/21/08
Second blood test show that the numbers are stable and holding.
My gait and balance are improving. However, from day to day there is some instability in both.
Davis
Last edited by Davis on Tue Jun 24, 2008 3:13 pm; edited 26 times in total
Joined: Jan 18, 2008 Posts: 9 Location: Chicago, Illinois
Posted: Fri May 02, 2008 4:08 pm Post subject:
Jamie wrote:
Good stuff.
We'll still be here then!
I hope I do as good a job as you are doing.
The others that shared their experience helped me understand the process. I know for some its too much, but for me it is helpful.
Thanks,
Davis
Well I am creeping up on eight months out. I have to say that the recovery from the HiCy is a slow process. My overall red count is still low so I would classify myself as being anemic which is a drain on energy. I have always been very active so people really can't tell a difference but at the end of the day it is not hard to fall asleep.
As of my last MRI a couple of weeks ago I have no signs of any activity and the lesions in my spine look good from the standpoint of showing no inflammation. The lesions start to appear to be more of a shadow and don't look as enhanced. My symptoms have not subsided much and have actually worsened to some extent. The worsening that I mentioned is not detectable through the typical neuro exam that we all know so well. My EDSS has gone from a 4.0 to a 3.5 and that is where it is currently but my muscles act differently. It is hard to describe.
There are two explanations for this. One is the glass half full approach and the other is the glass half empty. My neuro takes the glass half empty which is that even with absence of active disease you can still have a worsening of symptoms. This is from previous damage finally catching up and you have neuron death which has been shown to be possible. The other view is from Dr. Kerr and his opinion is it is part of the healing process and my neurological system is figuring things out given the lesions are healing and there is no disease. This sort of makes sense as well. Since so few of us have gone through the HiCy process and most previous MS patients don't ever get to experience healing, there is not a lot history to go by. With all that said all we can do is say that yes the Revimmune has done what it was supposed to do which is to stop the disease and as far as recovery goes we play the game of wait and see.
Congrats and good luck to all of you who are going through this. You will not regret it. I don't for one second.
I am 13 years out from first symptoms. My MS was RR but had entered into a more progressive state. My flare ups were occuring every year. My neuro has always been very suprised at my lack of disability given the number of lesions in my spine. The constant exercise and hours in the gym are a testament to my low EDSS and continued mobility. I don't have much doubt about the proceedure taking out the disease. It is all a question about how much repair is going to take place. It would be worse if I had not gone through this, that I am certain. I started a drug called fampridine, which is being tested by Acorda in a second phase III trial. It can be made by a compound pharmacy. It is supposed to increase conductivity in the nerves by blocking sodium channels in the damaged axons. I have to say I think it works. It is not a miracle drug but I do notice a difference. See the link below.
Search for fampridine-SA on this site. There is a forum for it and they talk about the generic that can be made at a compound pharmacy. My neuro prescribed it for me. I believe that he is running one of the trial sites for Acorda. If you can not find the name let me know and I will get it for you. BC/BS will cover compound drugs with a prior approval. It was about $65.
Joined: Mar 02, 2008 Posts: 83 Location: Lake Bodom, Finland
Posted: Sat May 10, 2008 2:51 pm Post subject:
HiCy wrote:
Jamie,
Well I am creeping up on eight months out. I have to say that the recovery from the HiCy is a slow process. My overall red count is still low so I would classify myself as being anemic which is a drain on energy. I have always been very active so people really can't tell a difference but at the end of the day it is not hard to fall asleep.
As of my last MRI a couple of weeks ago I have no signs of any activity and the lesions in my spine look good from the standpoint of showing no inflammation. The lesions start to appear to be more of a shadow and don't look as enhanced. My symptoms have not subsided much and have actually worsened to some extent. The worsening that I mentioned is not detectable through the typical neuro exam that we all know so well. My EDSS has gone from a 4.0 to a 3.5 and that is where it is currently but my muscles act differently. It is hard to describe.
There are two explanations for this. One is the glass half full approach and the other is the glass half empty. My neuro takes the glass half empty which is that even with absence of active disease you can still have a worsening of symptoms. This is from previous damage finally catching up and you have neuron death which has been shown to be possible. The other view is from Dr. Kerr and his opinion is it is part of the healing process and my neurological system is figuring things out given the lesions are healing and there is no disease. This sort of makes sense as well. Since so few of us have gone through the HiCy process and most previous MS patients don't ever get to experience healing, there is not a lot history to go by. With all that said all we can do is say that yes the Revimmune has done what it was supposed to do which is to stop the disease and as far as recovery goes we play the game of wait and see.
Congrats and good luck to all of you who are going through this. You will not regret it. I don't for one second.
HiCy
I would have figured after 8 months you would be feeling a lot better! Are you feeling any better MS wise so far?
I have an EDSS of 1.5 after 14 years. part ofme wants to go through with this treatment then another part gets scated. this is chemo and in spaite of what some might say, you can die from this treatment. I am not sure if I am sick enough for HiCy, but I am also not sure if I should wait.
You have a chance of dying from a monthly Cytoxin doses over time but there is --I repeat-- there is the same chance of dying with HiCy (different than monthly cytoxin) as taking avonex.
Less than 1%. Only difference is this has a 100% chance of stopping MS progression where Avonex is only 33% of slowing it up.
Folks again keep it in perspective. I would rather be sick for 4 days of chemo than sick for years for two days a week from Avonex shots that may not work. I tried the shots and was thrown down the stairs once a week. In addition to MS and those shots life sucked!
Again if your MS is in check don't do Revimmune.
As soon as someone dies from Revimmune at JH I will let you know. The Docs told me I won't get a name but I will get a report that someone died to report to you all.
One person has died from HiCy and they had SAA not- I repeat- not MS. With MS the immune system is down 8 days or so. With SAA it's around 60. They died from a complication and not the actual HiCy either. The complication was from an operation that happened while the immune system was compromised. This was around 15 years ago. The issue that caused the death they fixed so nothing like that happens anymore.
If anyone dies from HiCy following the JH protocol for MS patients I will be shocked. But if it is only 1% of the folks treated who croak and the other 99% can get ended progression like me it would be worth it. I would be willing to bet the 1% would agree the reward justifies the risk.
PS...I just heard Denver is going to start to do this now in the next 6 months. They are finishing up the paperwork w/ the FDA to start here as well. I don't know the Hospital yet..my guess is National Jewish because they are the cancer folk.
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