cyclophosphamide patients from Johns Hopkins

Davis

Is there anyone that would like to share their experience with Drs Brodsky & Kerr's high dose cyclophosphamide treatment for multiple sclerosis?

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 419

Read the whole forum!! You will know as much as the rest of us!! I'm just waiting for the OK from my insurance.

I'm not being rude I promise, it's hard to show emotion on the internet. Start at the bottom and work your way up. I got MS and can't type that much hehehe.

HiCy · Family Member Joined: Oct 31, 2007 Posts: 58

Davis,

If you look back at the "testimonial" blog you will see some of my posts and emails to Chris. I went through the treatment in September. I really can't say enough about the people and facility at JH. They have a great deal of knowledge about this proceedure and are really at the forefront of some really great things. The proceedure itself is pretty straight forward as Chris is about to find out. You can have some complications as you can see from reading "rebooting times" but overall it is safe. I admit I went through it with no problems other than the couple days of sickness due to the Chemo but after that every day you feel a little better. You are in and out of the outpatient center which is a great facility. 10 hours a day for the chemo days and then for me it was two hours a day for them to check my blood, see my white cells die off a little every day and then say see you tomorrow morning to do it again. I had one transfusion and a couple bags of platelets. My biggest problem was being enemic for the months that followed. It is a drag being tired all the time. I don't have this symptom normally and I have always been very active. The key to this proceedure is being in the best physical shape as possible. That strength will get you through the rough days. The days you feel like a MAC truck ran you over and then backed over you again just for good measure. You get through it because you can always see the light at the end of the tunnel. Read the previous posts and I will be more than happy to answer any questions.

HiCy

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 419

See my big question is are you getting better and not really realizing it?

Also, I've talked to a bunch of chemo patients and they have all told me to put on some extra weight because I'm going to loose it big time.

I'm in good shape but I've packed on 15 pounds in the last two months to get ready. I weigh 175 now.

I can't work out well anymore because of the spasticity. I'm bringing a ps2, and light weights with me to Baltimore. I figure day one of the chemo those lil bastard cells are dying, and this disease is finally letting up.

My right hand dexterity is horrid. I just finally bought the thing this weekend because I read the thing will help my hand eye coordination. I start day one with that and just light ankle and hand weights.

It's my hope the spasticity will finally let up and let me stretch and exercise again without a bunch of pain. I expect it at first, but now I will go forward rather than suffering for nothing lol.

I kid you not, soon I will have the video up, but my wife uses a rolling pin on my calves to get them loose some days.

Yes it does feel sooooooooo goooooood!

HiCy · Family Member Joined: Oct 31, 2007 Posts: 58

Chris,

Well I feel better in respect to having more energy. As of my last blood work my red cell levels are continueing to rise. It is hard to say if the spasticity that I deal with is any better. I create a lot of stiffness just from my level of activity. I am roughly 4 1/2 months out so Dr. kerr and staff say it might be a little early. I have had the disease for 13 years so there is some real damage not just inflamation. The good thing is there has been no additional activity.

I lost 5 pounds during the three weeks. You really don't feel like eating for only a week and then your appetite comes back. You put the weight back on because you really don't do much for those three weeks. You go from your place to the IPOP and back to your place. Watch TV and sleep in the afternoons. By the end of the three weeks you start to go a little stir crazy. By the end of my time I was able to get out a little. It was summer so I would go to lunch at outside resturants to make sure to avoid people. That is the biggest concern during this process is staying healthy. If you get sick you end up in the hospital for IV antibiotics. To avoid that you stay away from large crowds as much as possible.

HiCy

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 419

OK, so Wed, is my three weeks out. How long did insurance take to get back. This is United Healthcare.

I plan on sealing myself off from the world so to speak for one year. Nothing but work on Chris time. If my wife gets ill, I'm going to a relatives or friends house.

Just curious and getting really antsy!

HiCy · Family Member Joined: Oct 31, 2007 Posts: 58

Chris,

I had my appointment like yours on the 25th of July and started treatment on the 26th of August. It took about 2-3 weeks for them to get the request into BC/BS, have them first say no and then for them to have a peer to peer call to talk about the benefits of giving this a shot. Once approved you will get the call and start within a week. It all comes down to the financial benefit for the insurance companies. I was on Tysabri at $4K per month so for BC/BS to risk $30K they have almost gotten their investment back already.

Once you are back home you really don't have to be that careful about getting sick. Just the normal hand washing and avoiding sick people if possible. My whole family has been sick more times than I have since September. I have had one small cold for three days. No reason to sequester yourself or send you wife away if she catches something.

HiCy

Loobie · Posted: Mon Jan 28, 2008 1:55 pm Post subject:

I have to ask one thing. I'm in the Tovaxin study. If that stuff does not work for me, I am looking at all other options, and this is one of them. My question is this: do you have to have a certain level of disability to get in the study? By that I mean min. EDSS score or some obviously visible disability. I'm a 4 right now, but am still fully ambulatory. My neuro. has me as a 4 since I have so many issues with my eyes, bladder and bowels to where he considers them disabling since they are life altering. I, too, have United Health Care and if Chris can get them to cough it up, I am going to use him as an example. The only issue I see is that I haven't cost my insurance much in terms of therapy since I'm in a trial and the drugs are free (and I've only had UHC for this last year, so they have no history of my Avonex usage). I have a good year before I can make any kind of informed decision about Tovaxin, but if all goes south, I was just wondering about the level of disability you have to have to get accepted there. I went to a link that Chris had posted and it didn't seem like they are that concerned with only treating the most disabled. It more or less seemed like they would take all comers.

Like I said, I'm a ways out, but after this last year, which kicked my ass, I'm not going to keep taking chances if me and my neurologist decide Tovaxin isn't doing the trick. So that being the case, let me know if you would if there are any exclusionary criteria based on disability. I would greatly appreciate it.

HiCy · Family Member Joined: Oct 31, 2007 Posts: 58

Loobie,

I am a 4 as well. My guess is JH is looking for middle of the road patients at this time. Patients that they can not only stop the disease but see a great improvement in disability. They are starting an official Phase III study this spring with an end point of 12 months. Once FDA approval is granted this proceedure will become more widely available. By the time you are out of Tovaxin and if it does not work for you this could be right up your alley.

HiCy

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 419

The exact thing they told me in my appointment is this:

"You show activity and inflammation on your MRI so you definitely fall into the category we want to treat."

If you have an MRI with white dots on it you are OK for the treatment. If you do not show the dots you are not active. Stress out and redo the MRI lol.

If you have active lesions you qualify. This is the way they can clinically track you.

Jamie · Family Elder Joined: Jan 08, 2008 Posts: 171

j

Lyon · Posted: Tue Jan 29, 2008 8:30 am Post subject:

Loobie · Posted: Tue Jan 29, 2008 11:39 am Post subject:

Well I have a nice selection of lesions to choose from so this should not be a problem! I hope I don't have to go through a trial again (I mean a placebo controlled one) if my stuff does me no good, but this approach seems to be very promising. For some reason I was thinking about people with MS who had it new 30 years ago. These conversations about which route to go and what not would blow them away. I have never got caught up in the "now is the best time to have MS" bandwagon, because I would think that would be everyone's thoughts who is working on a therapy. However, there is quite a lot of shit going on right now! It's like buying a computer. You don't want to buy today because tomorrow it may be old news!

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 419

I hear ya!! If your MRI is active and you have insurance there is no trial. It's off label treatment.

This is just like LDN, only with clinical proof to back it up for insurance. The clinical trials they are starting, are starting at phase 3.

I'm sick of waiting thats why I'm doing this.

Lyon · Posted: Tue Jan 29, 2008 1:08 pm Post subject: